Working on a Full House

Miracle Myra is 1 year old!

2010-09-23T23:06:00.001-07:00

Wow.

I'm a little overwhelmed this day thinking about last year. This has been one of the longest years of my life. Yet, I am so very grateful for all I have learned this past year, how my relationship and trust in Christ is the best it ever has been, and how many miracles I have been privileged to witness. I think we all witness miracles in our lifetime if we are paying attention. But, how many people get to witness them daily, weekly or even monthly? Why God chose me I do not have to ask. He is my Creator and He knows me. He promised to walk with me through all life's challenges, and I can honestly say He has calmly led me this past year as I clung to Him with a sort of death-grip. God is good, all the time. And I will never again be the same person after this year.

Me just weeks before Myra was born.

The first time I saw Myra at just a few hours old, 5lbs 15oz

And now look at her! 12lbs 8oz

Cracking up...

Sweet smiles...

Sleeping peacefully...

You can see her beautiful curls here - the curls mentioned prophetically by my pastor who had a vision of Myra dancing at 3 years old with the glory of God upon her. Yet another small glimpse God is allowing us to hold onto right now as we wait for what the future holds.

So, though Myra still currently has challenges, I see how God is continuing to chip away at me and Mr. Prince, continuing to form us into who He wants us to be through this whole experience. And, though I wish for Myra to just be miraculously healed, I know there will be incredible benefits in my life for us to continue to walk into this 'world of the unknown', trusting God and His plan for Myra. But, I will continue to petition my God for her healing. And, I am still looking for miracles in our daily lives. I don't want to miss what God is doing!

Dear sweet Myra Annette,

You have no idea the impact you have made in the lives of so many people in your short 365 days of life. You have given people a window into the heart of a loving, gracious God. You have given people hope in their own desperate situations as they see your miracles. You are a privileged creation, fashioned by an Almighty God of the Heavens and the Earth in my womb. He knew your life story before you were even born. He also knows the ending to the story, which is only the beginning for us as believers. Myra, someday you will understand the love your God has for you and all the things He has done for you. We will tell you every day how much you have been blessed. I have no doubt you will be thankful and use your birth history as HIS-story. I look forward to having the privileged of being your mother for yet another year. I love you so much, Myra. Happy 1st Birthday!

Your Mommy

You can read more details about Myra's birth HERE.

New Doctor: Pediatric Neuro-Surgeon

2010-09-14T20:52:00.000-07:00

Today we went down to Riley's Childrens Hospital to meet with a Pediatric Neuro-Surgeon that we will nickname Dr. Positive. I was very pleased with how our meeting went. We were the last appointment of the day, there was no rush, she answered our questions in much detail and she was very honest and practical about Myra's situation.

I was planning on leaving this meeting discouraged. Leaving with them telling me that Myra's brain/head will not grow and there was no reason for us to hope that, that will change.

I was pleasantly surprised. Yet another push, I feel from God, that we should not be discouraged and plug on. Maybe even if the doctors had told us bad news, I should still remain positive, hopeful and completely faithful. But honestly, in the face of such negativity, some days that is really hard. And, though I cling to the fact that my God is the greatest power above all else, I know that He may or may not choose to heal Myra in the physical way I would want. So, any good news is music to my ears.

In case you do not understand Myra's current condition, she had severe mircocephaly or "small head" and her head has only grown 1cm since birth because of her traumatic brain injury. Her sutures, or spaces between the bony plates of the head, have all begun to fuse together because there has not been enough brain growth to put pressure on the plates to move and grow apart. If the sutures fuse completely, her head will never be larger than 14cm around, even at 10 or 20 years old. And we have been told that she would not likely live that long, either. So, out of concern that her brain will grow even though the doctors predict it won't (our God can do anything!) potentially causing more brain damage and the concern for facial deformations as she grows larger, we have asked to talk to another specialist who could actually perform this type of surgery. We have been told by many professionals that our requests will not be met.

So, basically Dr. Positive explained that she partners with a plastic surgeon to do facial reconstruction surgeries. She makes the opening, cuts the bones apart and the plastic surgeon puts the pieces back together. She said that she can open up any head, but the surgeon cannot put back together any head. Therefore, it is a duel decision for this type of surgery to be done. And there are certain criteria that have to be met in order for them to even consider doing the surgery. They will not do this surgery just to make the child look better. It's too risky of a surgery.

So, criteria A is increased pressure on the brain. Since Myra does not have a soft spot, an ophthamologist looks into the back of the eye to determine pressure. Indicators of this would be lethargy and/or extreme fussiness that cannot be consoled. In March she did not have increased pressure, but they will check again in March of 2011 unless we have concerns before then. With the amount of brain matter than Myra lost during labor and delivery, we have been told she has plenty of room in her small head for the good parts of her brain to continue to grow and therefore it will take a long time for her brain to put pressure on the bony plates and make them move. But, Dr. Positive told us that she has seen even the brain fluids put pressure on the skull and make the head grow. And, she said that since Myra's sutures are not completely fused, her head can STILL grow! That is great news for us! So, though pressure is unlikely to happen any time soon, it's criteria A.

Criteria B is, if we requested this surgery outside of increased brain pressure, both doctors would have to have indicators that Myra's brain has good potential for growth. Meaning, she will have to be developing neurologically, hitting milestones, learning new things fairly regularly for them to believe her brain is growing and maturing. The reason why is because if they did this surgery and her brain did not grow after the surgery, the bones could collapse into a worse position than they had been before and the surgery will be null and void. The benefits of the surgery will always have to outweigh the risks. And, it's not an easy surgery, it's not a fast surgery (8-10hrs) and it's not a low risk surgery. Also, there will be a large part of her brain exposed after surgery that they wouldn't be able to cover for years afterward. Huge risks. This is likely where Myra's potential for surgery will fall. First, we have to want this risky surgery, the doctors have to approve it and Myra's has to be healthy enough for it.

Therefore, we are a long way off from this kind of surgery. The doctors want a good amount of time to determine potential for brain growth and Myra's immune system will continue to be suppressed from her ACTH treatment for another 9 month minimum. So, we plan to meet with the plastic surgeon and Dr. Positive again in 6 months and talk more. Also, Myra is very petite and she said it would be quite difficult and risky to do this surgery on her because the small amount of skin to work with to cover a reconstruction and the small amount of blood circulating in her body (she would definitely have a blood transfusion - which could be donated by us, pretty cool!). So, the plastic surgeon could refused to do the surgery under criteria B because of the risks and only operate under criteria A.

I just have to believe that God's hand will guide all this. I did not want the g-tube/nissen surgery when Myra was only 3 weeks old. I knew she would nurse even though they told me she probably never would and I wanted to wait another week for her to try nursing and the bottle. But, she ended up getting the surgery at the very strong recommendations of all the NICU doctors (you definitely don't have the control and freedom of decisions in that environment like you do outside those walls). But, the g-tube has proven over and over again to have helped her in time of need. Though she did starting nursing full-time before we even left the NICU (praise God!), she wouldn't take her medications orally for the first 4 months she was home, she stopped eating when she was in the hospital with Rotavirus at 8 months after she became dehydrated and now we have to supplement her with fortified breastmilk to help her gain weight. Though I don't like the scar on her tummy, the weird tube that sticks out and leaks on her onesies or the pain she had after surgery for over 15 hours, God allowed Myra to get this g-tube knowing that it was what was best for her. Knowing her future. Know what I did not know. And, I still don't know what the future holds. So, I will wait for God's lead. Maybe not always patiently or cheerfully or without the pain of a mother's heart, but I will wait. Knowing that only He knows what is best.

This verse has been shared with me at least 3 times in the last two weeks through different venues:

"Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, 'This is the way; walk in it.'" Isaiah 30:21

And I love this verse:

"Trust in the LORD with all your heart
and lean not on your own understanding;
In all your ways acknowledge him,
and he will make your paths straight." Proverbs 3:5-6

What more do I have left to do but trust the God of the heavens and the earth?

Thank you to all of you who are committed to praying for Myra and our family. I feel those prayers and I pray you, too, are being blessed by your faithfulness.

Myra's Fall Wardrobe

2010-09-06T11:12:00.000-07:00

Well, Myra is still so tiny at just under 12lbs, she fits into all of her fancy winter dresses from last year shown here. So, I don't need more church clothes quite yet! But, she only had one jacket/pants outfit last year and her legs are too long for 0-3 months now! And too small for a cloth diaper... World, we are moving up in sizes at almost 1 year old! Her onesies are all still newborn and 0-3 months, though. I've never gotten so much use out of baby clothes! So, I decided that with her g-tube (that we are currently only using to stretch her stomach after nursing), layers are best. If her tube leaks onto her onesie, it's much easier to just change the onesie than the whole outfit.

Thus, her new wardrobe....

I loved the jacket/pant outfit we had last year. I'm a little concerned these might be too warm, being that 3 of them are fleece, but we'll just have to see. I plan to buy maybe 2 more cotton or valuer ones that are a little lighter like the one on the far right side.

UNfortunately, Myra will still fit into the newborn hats I crocheted last year. I love them, but I'd much rather have her head be larger.

I've also been wanting a pair of those little 80's tapered leggings for Myra to wear under dresses and long tops, and I finally found a pair!

These are purple and will only work under this dress, but I plan to use them as a pattern to make a pair of brown ones out of a pair of cotton pants she has. Most of her dresses are brown and will be slightly shorter than last year, so this will be perfect! I also bought some cream leg warmers to wear in lieu of tights. These will be nice so I can take them on and off quickly so she doesn't get overheated in the sling or wrap.

So cute!

ACTH Finally Done!

2010-09-05T22:16:00.000-07:00

I have given my last injection into my little girl's pricked-up thigh!

To date, I have given Myra 114 shots....

Paul did one...

Ugh....still makes my stomach queasy to talk about it.

Myra's Infantile Spasms (IS) have not shown up on an EEG since a week into the ACTH injections. She was having over 1000 seizures a day at one point. She continued to have the physical symptoms of the spasms pretty regularly through June and much of July. Now, she has an occasional jerk with her left arm, but they say they are not seizures. I believe them and expect these to go away just like the tremors they said will never go away, the facial twitches they said might never go away, the high tone they said could never go away...all of which have gone away!

Myra has never had any other seizure except these spasms. With her brain injury, doctors have told us her chances for having lots of different types of seizures is very high. And 1/5th of children with IS go on to have uncontrollable seizures for the rest of their lives. Myra is already proving she isn't part of the "norm" for brain-injured children, and I expect her to continue to walk in God's blessings and stay far away from that "norm". I'm excited to see what God plans to do with Myra these next few years.

Now that these spasms are gone, Myra can start to develop neurologically. IS delays development and can even destroy milestones already met. Since the spasms have subsided, Myra is already holding her head up off her shoulders about 75% of the time (which she lost the ability to do during her spasms), rolling over from tummy to back 95% of the time after her arms are propped in 'tummy time' position, rolling from her back to her side on her own and her vision is improving daily! Oh, the places she'll go!

In just a few weeks our baby girl will be ONE! We will have 12 months full of blessing after blessing recorded!

MFW Homeschool Week 13 Review

2010-09-04T10:00:00.000-07:00

We have a shortened school week this week because we are going to a wedding out of state this weekend. But, I tried to get as much done as possible. Crafts were nixed due to time constraints, but I promised the kids we would do more in the months to come.

This week we studied Connecticut, Maryland, South Carolina and Massachusetts in history, more weather in science focusing on thunderstorms and the water cycle and one day on earthquakes, kindness/compassion in character training and ballet in Preschool, at the request of Angelica Pickles (both girls start classes soon).

Character training books this week.

I love this series by Gary and Jan Bowers (Tessa's Treasures). I met Gary at a homeschool convention this spring and bought both of his book series you can see here and here. I also have two posters now of some paintings Jan Bowers did. They are adorable. My favorite is called Five Messy Faces and shows 3 girls and 2 boys eating icecream...my children's favorite treat in the whole world. These books are going to be some of my kids' favorite books over the years.

Short, concise books for each state and a few fun stories for history.
Dr. Seuss was born in Massachusetts and we learned about his childhood this week.

For the states, I am mostly trying to get the kids to remember the nicknames for the states, which is a challenge for me, too! They already know the state bird and flower for IL, IN and MI.

Science books, in addition to The Usborne Internet-Linked Children's Encyclopedia.

I am truly amazed at how much my children retain and understand. Before even starting these books, I asked my 5 year-old what makes rain and she explained the water cycle to me completely! I know we did seasons and weather a little last year (when she was 4), but I don't think I understood the water cycle completely until I was much, much older.

Preschool ballet books....
Angelica Pickles and Princess Pea Loooooved these books!

And the girls had their ballet outfits on much of the week, too.

Here is Sid the Science Kid's fun reading books for this week. The Akimbo series stemmed from our read aloud last week in Preschool (Akimbo and the Elephants). Apparently he liked Akimbo's adventures!

I heard one lady talk years ago about how much reading she has to do to pre-read every book her child reads. I thought I would do the same. I love kids books, both my husband and I are teachers, I read fast and I want to know what my kids are reading. Well, it's impossible. For me, at least. I would love reading through all those books and enjoying the stories like my kids, but I just don't have the time. But, that doesn't mean I don't know what my kids are reading. My son reads, literally, faster than my husband and as fast as me. And if you know me, I read fast. He whips through one of these chapter books in just an hour or two. And he will sit down and read a few at a time. He is an avid reader and I would never be able to keep up. Unless I slowed him down, of course. So, instead, I read reviews online, research series, ask other parents and skim multiple chapters of each book. And, because he can narrate every detail back to me, I don't think I'll ever miss a detail! *smile*

I am always looking for more books and series for him to read, too. So, if you have any ideas, send them my way! He reads about a 4th/5th grade, but obviously mentally can't handle a lot of books in that reading level because he is only 7, which makes book choosing difficult. Some of his favorite books are the Magic Tree House series, Boxcar Children series, Magic School Bus chapter books, a Donald Duck comic book (not sure of other appropriate comics out there), E.B. White books, Ralph S. Mouse series, Ramona series, Henry Huggins series, Flat Stanley series and we will be starting the Tales of a Fourth Grade Nothing series soon. He reads other books, too, just loves reading series!

Looking forward to the weekend!

Safety Village

2010-09-01T13:26:00.001-07:00

Well, our first field trip of the school year was to a place called Safety Village where kids learn how to be 'expert pedestrians'. The sign literally said something about keeping our kids safe so they make it into adulthood....ha! It was a pretty good program. The lady was slightly winded and there were little visual aids before they got into the mini village, but then again, I am a teacher and always nitpick that kind of stuff. Hence the reason why I'm homeschooling! Classroom teachers would haaate me...

Anyway, they had a little class about how to check if the street was safe to walk across. "Look left, look right, look left....are we safe? Yes!" And how to cross the street at a corner. "Look left, look right, look behind, look foward....are we safe? Yes!" They had parents act out scenarios (chasing a dog, ball or paper) and also watched a video of kids crossing the street to get to the park across the neighborhood.

Then they went on a walk around the mini village. They saw McDonald's, Pizza Hut, church, the Police department, General Electric (downtown in our city), a fire station and even a train! The village is truly adorable. They crossed streets, watched street signs and perfected their pedestrian skills. They even took a little test to see if they remember all the rules.

Sid the Science Kid with his partner, Elissa, trying to amuse Boo Boo.

Passing Pizza Hut and McDonald's
(Princess Pea and Angelica Pickles are the 3rd pair)

Our police officer lady guide.

McDonalds and the train

Wal-mart and Lassus Handy Dandy...Ha!
Church school and Pizza Hut

Police Department, complete with jail!
Stopping before crossing the railroad tracks.

Then...the fun began!

They got to ride 4 wheelers around the city! They didn't have to pay attention to the street lights, I was a little bummed about that. But, many had trouble just steering the bikes and staying on the right side of the road, so it was probably best.

Boo Boo riding with 'Officer Sid'

Princess Pea's 1st time on a 4 wheeler, she did pretty good!

Angelica Pickles struggling to go forward. She kept getting distracted by other kids. And she wouldn't take her foot off the pedal when she wanted to stop. Didn't get the connection. Got my feet run over a few times. Baby in the sling, toddler by my side...she had to get off. It was fun for the two seconds she was on it, though!

Officer Sid picked up Angelica Pickles after we decided it was safer for her to ride along

Very unique program, so I'm thankful we had the opportunity to go!

New School Room....sort of...

2010-09-01T12:49:00.001-07:00

So, I rearranged my living and dining room the other day. I haven't rearranged my living room....ever. And my dining room has always changed as we added or took away a changing table or high chair or added another book shelf. So, I'm sure it won't stay this way forever, but I'm liking the change so far!

The dining room is basically our school room. My office is where our school stuff is stored, but there isn't anywhere to work there but a small desk for quiet independent work. I have posted on organizing my office before here. But, I got in a 'mood' and went to work picking up the room and reorganizing everything. I still have some details to work on, like getting new preschool toys out, but I'll get to that later.

View into our ~~dining~~ school room from our living room. The shelf is the kids' main bookshelf, the colored bins next to it are their school book bins and the fancy diaper box on the floor is where we keep our coloring books. On the window sill are Princess Pea's Bob books for easy access but away from the little kids, our globe, our kid bibles and boombox. Yes, I just said boombox!

(Do not look at the folding chair we have at the table for my seat. Or the mismatch of chairs. Or the broken chair on the end that is my husbands. We are pretty hard on chairs, huh?)

Here is our main bookshelf. (Both the girls' room and boys' room have shelves, too.) The top shelf holds all my plans, daily read alouds, worksheets, teacher manuals and such for school, along with their notebooks and file folders. 2nd shelf is beginning readers for Princess Pea and chapter books for Sid. 3rd shelf is pictures books for all ages. 4th shelf is board books and baby books for Boo Boo and Miracle Myra. Hanging on the left are our Helping Habit notecards you can read about here.

Here is the other side of the table. It has our toy bookshelf, mostly preschool toys and puzzles for all ages, and our toy box. On the wall is my monthly calendar, colors and above near the ceiling is the alphabet.

Look to the right and you'll find our flag, bible verses, family rules, baby calendar and 10 commandments on the wall. Other things will go up here as we get to them this year. We have a timeline for the other wall, but I need to remake it to make it last longer.

This is new....our listening corner! My kids love listening to Annie's soundtrack, Magic Tree House books, the bible on tape and other picture books on tape. I just purchased a handful at our library book sale and plan to still borrow them from week to week. Yes, we put those diaper boxes to use! We use cloth diapers, so they are valuable when we have them! Ha!

That's it! Change is good!

When Angelica Pickles came downstairs after bedtime last night she said, "Do we have a new house?" Too funny! Yes, my dear, we do!

My Father's World and More Homeschool

2010-08-27T13:00:00.000-07:00

Last year we started Adventures in My Father's World (2nd/3rd grade) for our history, part of science and some of our bible. I added in my own science with Sonlight Science K and my own bible stuff, too. Sid was an advanced 2nd grader last year and Princess Pea in K sat in all the read alouds and did much of the notebooking. I started school just 7 weeks before Myra was born in September, thus only getting through 7 weeks of MFW. Over the next year, with all of Myra's special needs, doctor appointments and lack of schedule and sleep, I only made it through weeks 8-10 in MFW, and I didn't do much extra with them besides the book basket. We focused on bible, character training, math and reading and did minimal spelling, science and language.

So, I am starting in full swing again this year and am tackling all the subject areas, starting this week. We did MFW history week 11 last week, mostly just the reading. I have jumbled up the science in MFW, bulking their weeks together to make open weeks to add in Sonlight Science K because I think MFW science is pretty minimal for my taste. So, the science we do rarely is on the correct corresponding week. So, please know that if you decide to follow my MFW posts.

So, I'll be back to posting each of my MFW weeks and sharing all my ideas with you. I won't be doing as many projects this year as I did those first 7 weeks last year, due to time restraints with a special needs baby, but I always try to spice things up as much as I can in school. I want them to enjoy and remember history, because I never did. But, in case you are just joining me, here are my old MFW posts for weeks 1-7.

MFW weeks 1&2, Ericsson & Columbus
MFW week 3, Columbus
MFW week 4, Native Americans
MFW week 5, Pilgrims
MFW week 6, New Netherlands
MFW week 7, Pioneers

Again, 8-10 wasn't really recorded and we did minimal work and just read through the suggested reading and some book basket books.

So, onto weeks 11 & 12!

Week 11: Last week we studied President Washington. I hadn't yet added in formal character training (but there is daily character training going on around here as kids learn to work together and get along), a Preshcool theme or science until week 12. So, there isn't much to share for this week. Our best book basket book was the Landmark book on George Washington. My kids love those Landmark books! I planned to do the bird studying on the correct weeks for MFW, but I currently can't find my Birds, Nests and Eggs book...

This week (MFW week 12) we are studying the first 4 ratified states (Delaware, Pennsylvania, New Jersey, Georgia), African Elephants in Preschool (her choice), Selfishness for character training and a quick overview of seasons and weather in science (still haven't found my bird book for MFW science).

Here are our book basket books for MFW history week 12. Since we are only covering a state each day, I didn't want to overwhelm the kids with books and facts. Two were short, informative books and the state alphabet series books had some great pictures and fun facts.

Sid the Science Kid had one chapter book to complete this week,
Cornstalks and Cannonballs

Princess Pea working on her state page for Delaware...

I was impressed with how well she did copying the pictures!
Sid did just as well on his, too!

The Liberty bells we made on Pennsylvania day with real bells!

I completely forgot to photograph Grandma K's peach pudding we made on Georgia day....ooops! It wasn't as good as Grandma's, but the kids enjoyed it!

These are our Preschool books for the week on African Elephants. I usually read one nonfiction and one fiction book each day for Preschool and then we have activities most days. This week I'm just easing back into full-time school, so we nixed much of the extra activity stuff for the sake of just making it through the week and getting it all done. She will have more activities as we move along.

Here are our science books for the week. I have the worksheets and books for all of Sonlight Science K, but never purchased the weekly plans. I figured I could wing it without paying the extra $50-$60. So far the kids are learning a ton and enjoying science. Again, we usually have lots of activities with science, but it's a little dry this week for our first full week back.
And some random photos from the week...

Myra assumes her normal position while I work on school at the table with the kids. Princess Pea finds it amusing to hold a baby the same way...silly girl.
If she is not sleeping or doing therapy, Myra is often a happy little girl sitting in her high chair with us at the table. She loves the crinkles on this banana toy, can you tell? Play therapy!

Sid the Science Kid practicing piano. Notice the little mini-me?

Myra zonked in her swing....she never does this!
(Her bear in her arms thanks to Angelica Pickles...)
I can never read a book to just one kid anymore...
Notice the finger in the nose? Lovely....
After nap time, Sid shares a book with Boo Boo one day.
Can we all say Awwwwe!
When Daddy gets home he is always bombarded
with books now that school has started.

But, my favorite project of the week was this...

For Princess Pea's A Reason for Handwriting, she writes out a bible verse on special paper at the end of each week in her best handwriting. This was her first week to make one and I have posted a picture of her practice page and her final page below. I think she is doing well for the first formal handwriting book she's used and only being a few weeks into the program. I let her decide who she wants to gift her verse page to and this week she decided on our new neighbor! He moved in a few weeks ago, but we haven't formally met him yet. We decided to make an extra pan of peach pudding for him on Friday and bring him a welcoming dessert and this verse page. It was an awesome experience for the kids! I forgot to take pictures of them with their peach pudding, verse page and the picture Sid the Science Kid drew of our houses side by side. The two guys seems amused, and one had a daughter, so they didn't think we were completely insane bringing over our 5 kids and giving them a bunch of stuff. I think we will have a better relationship with this neighbor than any others so far. And, we also shared Christ together as a family for the first time. Awesome.

See ya next week!

Helping Habits

2010-08-26T06:34:00.000-07:00

Yes, this is my goofy title for 'chores' because I feel there is too much negativity related to that word, for myself included. I never did chores much growing up, but I still prefer to call my own work 'housework'. Even one definition I found was "an unpleasant but necessary task". So, we don't want that to be the attitude in our home! Helping Habits are fun, respectable, expected, helpful and appreciated 'round here! My kids actually argue over helping me do things around the house that are in addition to their regular Helping Habits (HH). Helping and work is FUN because then we are big like Mom and Dad.

I don't have the greatest system, so there won't be any eyes popping open today, but I've had a few people ask about my system and a few others already trying it. I saw the notecard and ring idea used for ordering homeschool subjects once on another blog over a year ago, but I can't credit them because I don't remember who it was, sorry! I adapted the idea for our chores and made up a silly name for them. So, here we go...

Our Helping Habits are centered around meal times. They are done before and after all three meals (B1&B2-before and after breakfast, L1&L2-before and after lunch, D1&D2-before and after dinner). I use ring clasps to hold the colored notecards in order, and hang them near my homeschool shelf in the dining room where we eat and do most of our school work. My 7, 5 & 4 year-olds all have HH. My 2 year-old often times will ask, "My hepin hadit?" and I will give him a specific task cleaning up some toys. Get them started early, right?

In these photographs, my 7 year-old's HH are on the top and my 5 & 4 year-old's are on the bottom in that order. I am not and artist, so no laughing!

My 7 year-old cannot clean his room before breakfast because my 2 year-old is almost always still sleeping still, but it is cleaned before bedtime and no one plays in there from 8pm to 8am. I have trained all my children in their HH and inspect their work often, continuing to train them. (In case you were wondering, those are bookshelves. Yeah, I know you couldn't tell.)

There is some kind of tier system going on, though that wasn't my original plan. Last year the 7 year-old vacuumed (it's a dust buster in the picture, come on!) and the 5 year-old cleaned the table, but this year we have all moved up and learned new skills. It's so nice to get our breakfast dishes done right away. Oatmeal and cereal are so hard to clean after a few hours...

Before lunch and dinner we do a quick clean up of the house so it doesn't get atrocious. And, it would. If someone's allotted room is worse than the others, they will help each other out to get it done. Lunch isn't put on the table until HH are completed. Of course, there are always days I don't remind them to do them and the house doesn't run as smoothly on those days. Such is life. (Notice the 'sandwich' I drew for tidying the kitchen...lack of ideas and skills, sorry.)

Similar HH to after breakfast, but we also brush our teeth with water after lunch. The 4 year-old can't turn on the spout, hense the 7 year-old's extra HH. Otherwise, she would stand in the bathroom and scream, hense the name Angelica Pickles. *smile*

Notice the upgraded kitchen drawing? Apple.and.banana. Seriously, it's not that bad!

Tidying shoes is referring to our shoe shelf on the front porch. My 2 year-old loves to play with shoes, so it's always a mess at the end of the day, whether we went anywhere or not.

That's it! I plan to possibly make a before-dinner notecard some time soon. I'm a little tired of reminding them to get their PJs on, brush their teeth and clean up. With this system, I don't have to remind them hardly ever!

Also, duties such as filling or emptying the dishwasher, folding towels in the laundry, switching the garbage bags, etc. do not get done on a regular schedule. But, the kids are asked to help and I never hear any complaining.

This is where they hang in the dining room.

How do you organize your chores with little ones that can't read yet and have minimal ways of helping?

A Day in the Life

2010-08-23T20:58:00.000-07:00

Well, I am joining the Not-Back-to-School Blog Hop this year for the first time! I didn't quite make the first three weeks, but my last post on homeschool covered my curriculum choices and my school room anyway!

I recorded every hour of a simple Tuesday, just 4 weeks into homeschooling. And, this was the first day we incorporated history, science, spelling and character training so far this year. A gutsy move for 'a-day-in-the-life', huh? Well, you will see how it really goes in our house then, right? With five kids, a high-maintenance infant and lots of to-dos around the house, just getting through a full day of school is amazing right now. If you must compare, my ideal block schedule is written out HERE.

Warning! If you don't want to hear about the rambling musings of a homeschool mom with precise detail, click away right now!

Background: Baby Myra (11 months) is weaning from a steroid for Infantile Spasms and is changing dosages every 10 days; therefore, she is one unhappy baby much of the day and isn't sleeping much. This is day 7 of the rotation. Also, my homeschool day begins the night before. My plans need to be written out, the house together and books out and ready to go or my day never goes well. On this day prep work is all done and, since Myra was up so late, the dishes and kitchen are all clean, too! Unfortunately, I start my day with less than 4 hours of sleep, and less than 2 hours the previous night...sigh.

6:45 Mr. Prince wakes me for my shower but I forfeit it for another hour of sleep. This also means I forfeit my quiet bible time. But, it often times ends up being an evening activity anyway. I'm much more of a night person.

8:13 I awake with no alarm, and surprisingly, not from children either. Myra is still sleeping, but I know the girls(4&5) are downstairs (they are allowed to go down after their room is clean and after 8am with or without me). Sid the Science Kid(7) is up also, though often times he sleeps in with Boo Boo(2). I rush downstairs, make some bagels and cream cheese and head back up for a shower.

8:17 Upstairs I hear Boo Boo... stink! Will I still get a shower? I take him downstairs, change his diaper, make his breakfast and I secretly tell Sid he can turn on a video after breakfast if I'm still upstairs (mostly to keep Boo Boo quiet and occupied so he doesn't wake Myra or come find me in the shower).

8:20 Upstairs again and I'm suddenly irritated by the suitcase left unpacked ~~by my husband~~ from our vacation 3 weeks ago and the two baskets of clean clothes that were never put away. Unfortunately, they will all have to be folding again because of the digging through them the last 3 weeks looking for clothes. Wasted work, ugh! I get in the shower and I think about, what else? A blog post I read the night before about how to save on costs in the shower. Only wash your 'under' areas with soap (under feet, under arms and under pants) Really? Gross!

8:30 Out of the shower and dressing interrupted by Sid the Science Kid telling me the t.v. is not working. I tell him to give me 2 minutes and I'd be down to help. I get dressed in comfy clothes (not going anywhere today) and head downstairs and ~~save the day~~ fix the t.v. They watch, non other than.. Sid the Science Kid!

8:36 Brush my teeth. I realize I left Myra's monitor in the shower and in the bathroom upstairs I see... Myra's bumbo seat? Who put that in there? Back down to the kitchen it goes, and on my way I fume about the suitcase and clothes again.

8:37 Down to the laundry room to dry some clothes I washed last night and....they are dry! Thank you, husband! Unfortunately, I will not be able to fold them before they wrinkle. Grr! Washer loaded, but I still need to collect clothes from upstairs before I start it. On my way out I step over an overfilled basket of towels, boxes and boxes of jarred baby food from WIC, and who knows what else. My mudroom is so full of Salvation Army stuff and resale items, it's hard to maneuver. Ugh, more things on my to-do list that seem will never get done.

8:40 Throw hair up. Myra's monitor dies and I have to plug it in. Darn monitor! I get the kids' yogurt in bowls to finish off their breakfast. Oh no! Promised yogurt and an expired container! This has never happened in our house. Yogurt is equal to icecream or a candy bar 'round here. Thankfully, I find another container and I am saved from many tears. Clean yogurt tubs for recycling. Collect clothes for the laundry.

8:56 Sid the Science Kid episode over. Diffuse 2yr old tantrum with yogurt...success! Start washer. Preschool bible read over yogurt devouring. We talk about John the Baptist and the older two say they want to get baptized "to please God" like the book said. I said we would look into studying baptism and we would talk to Daddy. Pledge of Allegiance. Go over family rules and bible verses.

9:10 Helping Habits (chores) after breakfast. Classic storybook (Gingerbread Man) with Boo Boo.

9:17 Preschool with Angelica Pickles about African Elephants (her choice of theme this week). Princess Pea listens in while Sid the Science Kid does dishes. Sid seems quietly irritated he can't listen in also, but I'm trying to help the older two do their own thing so I can work with the littles during this time. Princess Pea reads the quotation boxes for the story, her idea. I only read one of the two books cause the baby wakes. Kids break up to play.

9:28 Get Myra up. Nurse.

9:33 Myra's medications and injection. Princess Pea helps change her diaper and Angelica Pickles helps calm Myra after her injection and collects all the trash from it and throws it away for me. Girls singing to Myra.

9:44 Nurse again and put Myra in the swing.

9:49 Two character building books/stories about being selfish (Help Me Be Good Books). Discussion.

10:10 Change Boo Boo's diaper. Character Builders DVD on Sharing (12min) while I fold the laundry basket from this morning.

10:28 Myra's fussing in the swing so I start to rock her to sleep. Boo Boo insists that I read him some books, even though my hands are quite occupied. After two books, Princess Pea offers to read to him and they read 3-4 more books together. After Boo Boo finds something else to do, Princess Pea gets out her Language Smarts book and she works on the coffee table as I help her and still rock Myra.

10:50 Myra put down to nap upstairs. Language Smarts with Sid. Angelica Pickles is taking Boo Boo's toys and I get up to redirect her to the puzzles.

11:09 Myra's up after 19 minutes! It takes me almost 10 minutes to calm her. Kids are all playing house together in living room. I put Myra in her swing after she's calm and quickly check my email and Facebook.

11:18 Quick clean up with kids.

11:23 Make lunch while kids do Helping Habits. Myra's fussing in swing. Kids eating. Lunch often times is me redirecting their discussion, which often times is upsetting someone. The 7 yr old wants to lead everything, while the 4 yr old is craving the attention from her siblings. The 2 yr old shouts out little blurps and always gets a belly laugh out of everyone.

*First School Block ended, All About Spelling and History not completed thus far.*

11:40 Get Myra out of the swing. Try to feed her solid food but she was too fussy. Discipline Boo Boo for getting out of his seat. Finish lunch. Helping Habits.

12:00 Read aloud 2 chapters of novel. Myra fussing and falls asleep on my shoulder eventually.

12:12 Sonlight Science read aloud, 2 books.

12:23 Interruption...friend calls. Myra down for nap upstairs. Clean up lunch...ooops! Forgot after-lunch Helping Habits! Do chores for the kids. Each lunch myself. Two kids upstairs and two downstairs playing.

12:46 Myra up after 23 minutes...sigh. Poor girl can't sleep! Discipline Sid and Angelica Pickles for arguing and Princess Pea for not being nice. Rocking Myra. Still on phone.

12:58 Lay Myra back down for nap. Clean up kitchen while on phone. Switch laundry. Sid doing lunch dishes.

1:05 Myra up again! Off the phone. Rocking, calming...

1:12 Myra down again....getting frustrated. She usually isn't like this. Kids playing better together.

1:14 Friend calls back. Checking on homeschool stuff for her on the computer. Kids coloring. Discuss curriculum and homeschool schedules.

1:34 Off phone. Finish science reading with three oldest kids.

1:40 Boo Boo is very distracting while I'm trying to read, so I take him up for a nap. Read second preschool book with Angelica Pickles.

1:52 Angelica Pickles to bed. Adventures in My Father's World history with two oldest.

2:00 Myra up. Hey, that was a 48 minute nap! Hold her while finishing history lesson.

2:22 I help Sid the Science Kid with All About Spelling while Princess Pea does Horizons Math 1. Myra sits in her high chair and does play therapy.

2:40 Princess Pea begins A Reason for Handwriting Manuscript. Sid still doing AAS.

2:55 Princess Pea does AAS and Sid does A Reason for Handwriting Transition and Horizons Math 3.

3:12 AAS done. Princess Pea does Explode the Code and finishes the first book! Sid still working on math. Myra fussing. Nurse and do physical therapy with her.

3:22 Sid moving too slowly and too distracted, so he moves into the office to finish his math. I work on Junior Bible Quiz questions orally with Princess Pea while I do Myra's therapy.

3:50 JBQ and therapy finished. Bob Books with Princess Pea. She is doing some amazing expression while reading! But, she has a mini-tantrum about not getting a sticker for reading the book perfectly (a reward system we've used for all the Bob Books). I encourage her in how well she is doing and she recovers, just short of tears. Sid finally finishes math after 45 minutes or so.

4:00 JBQ with Sid.

*Second School Block ended 40 minutes late.*

4:10 Sid does JBQ studying alone with some defiance. I told him to memorize at least one new question in the next 10 minutes and he gains some motivation. Rocking Myra. Princess Pea gets Boo Boo up from his nap.

4:20 Myra down upstairs for a nap. Angelica Pickles up from nap. Change Boo Boo's diaper. Library Signing Time video on (learning American Sign Language).

4:22 Start dinner (lasagna). Change laundry, but can't fold the load yet.

4:45 Sid down and chat with Mr. Prince when he arrives home from his second day back at school while meat thaws in the microwave because, of course, I didn't thaw it the night before...

4:55 Blog, Email while noodles cook and Mr. Prince cooks meat. Alter size of pan and recipe when I realize I don't have enough noodles for the large pan. Better than some days when Mr. Prince has to make a quick grocery run because I've started cooking something and realize halfway through I don't have something... Happens to me all the time.

5:10 Lasagna in oven.

5:14 Myra up from nap. Yeah, almost an hour nap! Blog. Mr. Prince takes Myra and does lots of training and discipline for the kids as they wait for dinner. They are having a hard time getting along to play a game together. Myra falls asleep on Daddy. Helping Habits before dinner.

6:00 Dinner. Daddy holds sleeping baby and eats when everyone else is done, a common occurrence 'round here.

6:30 Dinner done. Helping Habits. Nurse Myra, feed solids. Dishes and talking to Mr. Prince.

6:55 Clean up house with kids. PJs, brush teeth. Kids run pretty wild this time of day. Should go outside, but we don't. Fold laundry instead.

7:35 Mr. Prince put kids to bed (every night). I hold Myra and do therapy stuff.

8:00 Adult evening begins, ensuing baby passing back and forth, blogging, t.v., chatting on the phone with some friends, nursing, bible study, minimum prep for tomorrow's homeschool, etc. Laundry not put away, will have to do that tomorrow when the kids are up.

Bedtime: 2:30a.m. with a total of 2 hours of sleep for the night...sigh.

And it all starts again! I think we had a pretty successful day, really. Looking forward to reading about other homeschool moms' days at Heart of the Matter!

I just received my first Blog Award!

2010-08-22T10:30:00.000-07:00

Well, I logged onto my page this afternoon to find out Shanna at Learning At His Feet has given me my very first blog award - The Sunshine Award! Very sweet Shanna, thank you so much. I am happy to hear some of the stories of my life have been an inspiration to you. We just talked about the fruit of our lives at church this morning, and it's definitely something I want mass produced in my life to Glory our Father. I now have one very small twig growing! =)~

Well, here are the rules to the Sunshine Award:

1. Thank the one who gave it to you and link to their blog.
2. Share seven things about yourself.
3. Choose seven others to bless with the award and let them know they've won an award.

So, seven random things about me....Hmmm....

1. I love to research. I'm known by my friends as the Research Queen. Often time I am talking to someone and will be researching what they are talking about at the same time. It's an addiction, ha!

2. I love to read. I usually have a parenting book, devotional book, novel and homeschool book I am working through at the same time. I've gotten away from that this past year, but have already started choosing my next book victims for this fall.

3. I used to hate pink and girly things growing up. Now I wear skirts, dresses, makeup and jewelry often!

4. I'm totally a Gleek for Glee!

5. There have only been 2 weeks that I haven't been pregnant or nursing in the 8 years Mr. Prince and I have been married. And I can count on two hands how many cycles I've had since our honeymoon!

6. If things in my life are out of order, I'm a wreck. I'm a total perfectionist!

7. I am living my dreams....the greatest husband and 5 beautiful children. The only other things I ever dreamed about were teaching (which I do while I homeschool) and doing missions work. I believe my mission right now is my children and other moms and families that I'm in contact with. Someday He may have me do different missions work, but I'm content where I'm at right now.

Now, to award seven other bloggers... I know some of you won't want to carry on the Sunshine Award tradition, but I want you to know I secretly watch you from the window of your blog and you have all touched my life in some way or another.

1. Janna from A Steadfast Life... Janna, homeschool mama of five little ones, has a fun sense of humor and tells life as it really is, messes, struggles and all. I love her realness.

2. Kelle at Enjoying the Small Things... Kelle write about her life raising two little girls and enjoying every moment of it. She is an amazing photographer and I love her humor and wit.

3. Greg at Wrestling with an Angel... Grey is a fabulous writer and shares his life of adopting children and raising a disabled son. His insights are magnificent and I find myself in tears often as I read his posts.

4. Ashley at Making It and Loving It... Ashley is "sew" very creative and her examples and illustrations are super clear for even the beginner sewer. And, someday I will be able to make one of her suggestions! Someday... =)

5. Jill at The Real Life of a Readhead... Jill just had baby #3 after a long pregnancy with bleeding and a diagnosis of Hypoplastic Left Heart Syndrome. Baby Joshua is recovering from surgery as I type. I love Jill's raw emotion and faith as she journeys God's plan for her life.

6. A.A.W. at Resolved2Worship... She is an amazing photographer and does a beautiful job sharing her faith and beautiful family.

7. Ellen at Love That Max... I love Ellen's perspective on being a mom of a child with special needs. As my own journey begins, her insights have been helpful and inspiring.

Thank you again, Shanna, for your award. And thank you blog world for your 24hr life support!

Summer Fun

2010-08-20T20:41:00.000-07:00

Here are some fun summer photos of our family and our vacations!

These are photos from our trip to Bender Park Zoo in Battlecreek, MI. We met up with my good friend, Andrea, and her husband and three kiddos.

I wish I had copies of Andrea's family photo...

Sid the Science Kid and Princess Pea with their friend, Makia

Princess Pea and Makia, best friends!

Angelica Pickles and Graham - these two are so cute together!

Mama and Myra sporting our new summer sling!

The whole group ~~hiding~~ ~~concealing~~ eating lunch in the park...

Here are some photos from our annual trip to IL to see my parents....

Aunt Linz with Myra

A fun water day in Grandmama's backyard with some friends, Joey and Becca!

This was the first time Great Grandma Liz met Myra in person,
and Myra loved her!

Silly Myra while eating her sweet potatoes!

Can you tell she Loves them?

Myra got to meet her new friend, Mason.
They are 7 months apart but really close in size!

I think she is telling him of her plans for revenge on her doctors some day,
or something like that! He looks so surprised!

Grammy and PaPaw took the kids to the IL museum...

Sid the Science Kid loved the human anatomy toys and puzzles.
Here I have all my organs in place, kidneys in back and all!

Boo Boo had to try it, too!

Sid and Angelica Pickles did the bone puzzle together while Boo Boo watched

I found a matching dress for Myra that matched the girls' dresses
I bought earlier in the summer!

Boo Boo wanted to be included in a photo!

Grandmama had a good friend who took the kids out on a speed boat!

Ready for boating!
(Yes, Boo Boo is in PINK! All life jackets were borrowed!)

Ready for take off!

Daddy and Boo Boo

Myra got to explore grass for the first time in IL....

Loving the lashes here...and the relaxed attitude...

Well, those are the highlights of July!

Homeschool Begins!

2010-08-18T21:24:00.001-07:00

So, I have been trying to get my ~~life~~ house back in order the last few months and it's been a super slow process. You don't get much done in a day between laundry, dishes, preparing 5 meals, homeschooling, etc. etc. etc. It's always catch-up and it's hard to get anything extra done. But, I'm trying. Remember my beautiful office photos last summer? Well, I never quite got to those two other bookshelves and now I'm trying to downsize to just two shelves altogether! I'm not sure I can do it. We are trying to slowly get our house ready to sell over the next year or so, and having an office that looks like it threw up childrens books probably won't help sell it. We are trying to store books we aren't using now for the kids, but I am a little worried we will never get them back out of storage. Anyhoo, the office has been my project the last month. And will probably continue to be my project for at least another month...sigh. I'll spare you the scary pictures this year!

Well, we started school as soon as we got back from Illinois at the end of July. So, we are technically into week 3, but I still haven't added history, science, spelling or bible. Right now they are just working on their workbook subjects while I continue to prepare everything else for the year. We still need to finish the second half of Adventures in My Father's World and Sonlight Science K before we move onto Galloping the Globe next year.

Sid the Science Kid is in 3rd grade this year, Princess Pea is in 1st and Angelica Pickles is doing PreK this year. The only thing formal Angelica Pickles will be doing is starting Horizons K. Besides that, we will be exploring books/themes and starting reading instruction. Sid the Science Kid and Princess Pea each have about 1.5hrs of one-one-one work to complete with me each day and another 30-60min of independent work. I do bible, character training, read alouds and science with the oldest four kids together (2-7yrs old). Here are their separate subjects for the year:

Sid the Science Kid, 3rd grade
Horizons 2b and 3 (currently finishing the rest of the 2nd grade book)
Language Smarts C
All About Spelling
A Reason for Handwriting Transition
MFW Adventures/Galloping the Globe
Junior Bible Quiz
Piano
Daily Personal Devotions

Princess Pea, 1st grade
Horizons 1
Language Smarts B
First Language Lessons
All About Spelling
A Reason for Handwriting Manuscript A
Explode the Code 1, 2 &3
MFW Adventures (grade level appropriate)/Galloping the Globe
Junior Bible Quiz
Sonlight Science K (finishing second half)

Angelica Pickles, PreK
Horizon K
Bob books

I'm still playing with our schedule this year, but I found out last year that a block schedule works much better in our house than a minute by minute play. That way, when baby needs rocked to sleep I don't screw up the rest of the day! Here is what it looks like so far:

Morning Routine, 7-9am
Shower and Devotion for Mom
Breakfast and Vitamins
Preschool Bible Story, Rules, ABC Bible Verses, Pledge with everyone
Clean up/Helping Habits (chores), Brush teeth
Preschool with Angelica Pickles

Block 1, 9-11:30am
Bible and Character Training with everyone
Princess Pea- Language Smarts and All About Spelling
Sid- All About Spelling and Language Smarts
First Language Lessons with Princess Pea and Sid
My Father's World History with Princess Pea and Sid

Lunch Routine, 11:30-1pm
Helping Habits
Read Aloud with everyone
My Father's World/Sonlight Science with everyone

Block 2, 1:30-3:30pm (littles napping)
Princess Pea- Math, Handwriting, Explode the Code independently
Sid- Math, Handwriting, Devotions, Piano independently
Review Independent work
My Father's World Book Basket with Princess Pea and Sid
Princess Pes- Reading Instruction
Sid- Narration and Writing
Junior Bible Quiz

So, we will work with this schedule next week and see how it goes! I'm excited about getting back into full-time school. My house just moves more smoothly and happily when school is in session! Must be because we are both teachers. =)

Medical Updates

2010-07-08T19:05:00.000-07:00

Well, these last two month has been a whirl wind of doctor appointments, summer days of fun, and trying to get my life back in order. Here is an update on Myra, since a few people have been asking...

In July Myra's pediatrician said she had low iron (6.8 when it's supposed to be between 11 and 13!), so we opted to start her on a multivitamin instead of constipating iron drops. Her levels were back at 9 a few weeks later, but we will keep an eye on it in the next few months.

Myra is still off the charts small just below 12lbs, 25inches long and head circumference at 35cm (it was 33 at birth). We are trying to stretch her stomach by putting 1oz of fortified breastmilk down her tube after each feeding. I really can't wait until this tube is gone, but for now it's helping Myra get healthy and allowing her to take her meds without choking everyday, too.

The Developmental Specialist at Riley Children's Hospital, Dr. Anxiety, seemed to be pleased with Myra's head control and even got her to push up off her chest during Tummy Time! He wants to put her in some hand splints to open her hands more, but I think we are going to try some tape to help first. He wasn't as anxious this time and I liked him a lot more than our first visit.

Myra is still continuing to see a physical therapist and just started with a occupational therapist. They have both been pleased with her demeanor and progress just in the last month. It's slow, but there. And even in spite of these horrid medications she is taking!

The Pediatric Neurologist at Riley, Dr. Z, was pleased that the ACTH has cured the Infantile Spasms so quickly. We are still weaning her from it and she will be done in September. Then, we will start to wean her off the Phenobarbital. I'm so glad because that suppresses cognitive abilities and I'm looking forward to seeing some great changes in Myra's behavior then! She will continue on the Keppra for a year minimum to prevent other types of seizures that she could be prone to.

Dr. Z also ordered a CT scan to look at Myra's sutures (skull bones) and brain size. We got the results while we were out of town. Unfortunately, they said Myra's brain is still significantly smaller than average and they don't expect it to grow much because there was so much damage done at birth. The skull bones widen as a growing brain puts pressure on those bones; but, without a brain large enough to put pressure on them, they can start to fuse together prematurely. All of Myra's sutures are either fused or almost fused. Therefore, without intervention of some sort, her head will not get larger than it is right now, which is the size of a newborns (>14 in). It's also quite warped. Dr. Z said she would refer us to a Pediatric Neurosurgeon, but her opinion was that they still wouldn't do anything for her. We are still holing out for a miracle, but in the mean time will meat with the Neurosurgeon in September and talk about our options then.

Please continue to pray for our little Myra. I have good days, but sometimes I still feel like the Israelites in the desert when they saw so many miracles but then continued to complain about their circumstances, wondered if God was really still there and continued to ask for more help and miracles from God. I wish I could be content at this moment, but I'm not. I want more for Myra. I want and expect more miracles. I wonder, if God decided that He was done with Myra now, if I could accept that. I have faith He can heal her, but sometimes I don't have the faith that he will. And I want God's Will for my life, I just want to guide that will myself! Ha! I still don't have that control thing given up to Him, do I? I'm much better than I was before Myra, though. I know He is the only one that can heal Myra now. I know He has her life in His hands. Those are the best hands she can be in and I'm trying to continue to trust He will be faithful. I tell myself all the time that He loves her even more than I do. Hard to imagine, but true. So, if He loves her more than me and He has the power to do what is best for her, who am I to want to guide that? I don't think God made this happen to Myra, but I have already seen all the good He has done in the midst of a circumstance brought about by man's sin in the world. He has done a work in me as well. His plan is greater and better. I just have to keep reminding myself of that.

Independance Day

2010-07-05T09:03:00.000-07:00

Well, unfortunately July 4th wasn't exactly what I had envisioned. We started Adventures in MFW this past fall and I was hoping to have the culmination of the curriculum at the July 4th celebration. Well, since we still have half the curriculum left, that didn't really happen. At least we studied the Revolutionary War and Declaration of Independence already! So, a little disappointing for me, but I'll live.

But, we did have fun this weekend!

We made some no-bake cookies together... Mmmmmm....

We made some crayon "cookies" from our old broken crayons (thanks for the idea, Anne!)...

This ended up being more educational than I had planned. Sid the Science Kid and Princess Pea had apparently learned about "cool" and "warm" colors, so Sid decided he wanted "cool" and "warm" crayon cookies. Next time I'm hoping to mix some colors and watch them blend into new ones.

And we dressed up for the holiday and went to Grandma and PopPop's for a cookout...

MommyK and Myra

Myra's 1st Independence Day!

The Klan (all hot and sweaty from playing outside)

We also went with our cousins to the firework show, but my camera died and these are the only photos I got! I'll have to post the cute ones from Aunt Sarah's camera of all the kiddos in their little chairs later...

MommyK with Myra and niece Avery

Mr. Prince had to prove he could do it, too...

On a side note, I was visiting with a friend this week who babysits a little girl who is 6 months old named Sophia. Now, I haven't been around a lot of babies since Myra was born, so I don't have much to compare her to besides the memory of my own kids. Not that comparing is great...but it does give me perspective. I was able to play with Sophia and get a feel for "normal" tone and strength in a baby close to Myra's age. I was happy to "feel" that Myra's tone is very, very normal. It gave me chills just thinking about how that part of her is HEALED! I think Myra is very much the size of a 6 month old right now, too. She doesn't have the chunky legs, but her length and such. Sophia and Myra were so cute together. Sophia kept grabbing at Myra and pulling on her shirt or caressing her arm and Myra loved it! She could totally tell she was there! And, she sat up against the couch for a long time!

In the next photo you can see the difference in Myra's head. It slopes back because the skull is not growing. I see her all day long, so I know there IS a difference, but I don't really SEE the difference myself until I compare her. It actually doesn't look THAT far off to me... Now, compared to another nine month old, it might be more noticeable. But, we are continuing to pray for the little brain growing in there and praying her suchers don't fuse. I've read that even if they fuse, the doctors won't do anything about it because it's due to a brain injury. I don't quite get that myself, but we are praying God moves those suchers himself and heals her brain. My baby girl, she is still the most beautiful girl in the world!

How cute are they?! So sweet...And Myra's not the only little girl with floppy ears!

And, I also wanted to share... four times in the past few days Myra has looked right at me. Right into my eyes. I can tell she is looking at me. The last time I remember her doing that was when she was in the hospital. I melt (and cry) every single time she does it. My baby girl is seeing things, I know it. She is seeing her Mommy again. Thank you, Lord...for another extension of your grace.

Up All Night

2010-07-04T03:43:00.000-07:00

Poor Myra.

I wish I knew what she was feeling.

Pain? Restlessness? Agitation?

No one has gotten sleep since we changed her dosage of ACTH again this past Thursday. She is having trouble getting to sleep and staying asleep. Then, when she finally seems tired enough to fall sleep, her body jerks her awake....Over and Over and Over again! I'm not sure if these are some type of myoclonic seizures or just startles or something. But, I hate them. They are just making this whole experience worse. Myra also seems to have these "shakes." You can't see her move, but as you hold her she is almost shivering. It isn't all the time, but I've noticed it a number of times in the past few days.

My poor baby.

Paul and I have starting taking "shifts" in order to get sleep. It's almost 7am and I've been up since 3:30am. Myra has slept about 20 min in there. Paul was supposed to have her from 8:30pm to midnight. I'm really hard to wake, so when she fell asleep around 1am, he actually still had her....sorry, Honey! So, she got a whole 2.5hrs. Oh, the days when she slept 7 and 8 hours... how I long for you!

I just feel so bad for her. I have no idea what it's like to have a seizure, but I'm sure it's not pleasant. I have no idea what her abnormal brain activity feels like. I have no idea what she can see, how she perceives the sounds she hears, what she can understand.... At nine months I started teaching my babies sign language. Myra isn't able to do signs herself at this point, but I plan to regularly do them for her. I hope they will allow her to be able to understand what is happening, predict what will come next. We touch her chin before we put anything in her mouth for "food" or "medicine." Now, when I feed her solids she often times will open her mouth after I touch her chin! She gets it! I have also started to do "milk" by squeezing her hand twice before I nurse her. And I do "finished" with her hands when she is done eating. Sign language has been awesome for my other kiddos, so I suspect it will help Myra. I've always wanted to learn the entire ASL language. Well, God gave me a visually impaired child instead of a hearing impaired child. But, I still think teaching signs a little differently than I have before will help her understand us better and eventually allow her to communicate with us earlier. Helen Keller, hello?!

For now, she is starting to fall sleep in the sling. Do I even attempt to lay her down when the other four kiddos will be getting up in the next hour? Plus, I've already tried to lay her down twice since 3:30am and both times she woke up immediate...WIDE awake...

Sigh.

Morning to all of you who got a lovely nights sleep! I hope I'll be going back to bed soon.

Happy Birthday USA, I don't feel like celebrating you today, sorry. Thank you troops, who do more than we could ever understand!

Night.

Miracle Myra is 9 months old

2010-06-27T00:46:00.000-07:00

Wow, these last 9 months have been a whirlwind.

Myra holding her chapsticks to help open her hands

Baby girl is currently weaning from the ACTH medication for Infantile Spasms and the hypsarrhythmia on the EEG is gone, unfortunately the physical spasms are not. But, we are still thankful for that and praising God that she can start developing again! She is 12lbs, 25in and is just starting solid foods again since her extended hospital stay in May. She is smiling again and a little more alert than she was the first few weeks on ACTH.

Here is a kicker, though... So, my understanding is if your child has high muscle tone, they will always have high muscle tone. If your child has low muscle tone, you can strengthen the muscles to improve it. Tone can change in the first few years, but becomes stable between 2 and 3. So far Myra has had high muscle tone since she left the hospital. It used to be higher in her arms than her legs, then her legs seems to get worse. She couldn't raise her arms up over her head without crying and couldn't lift her leg at a 90 degree angle without crying. I was stretching her muscles multiple times a day to ensure they wouldn't get worse from constantly being contracted. My therapist told me that high muscle tone is actually harder to overcome than low muscle tone. Not great news to hear.

BUT...

In the last month I have seen some changes! Myra's arms and hands aren't straight/stiff constantly and she is moving them more. She is not bothered by any stretching exercise anymore. I asked her therapist if she had noticed a change and she had. She said she has NORMAL muscle tone! And she assured me that in 15+ years of therapy, she has never seen high muscle tone just disappear!

PRAISE GOD! PRAISE GOD!

We've known all along that God has special plans for Myra. I have believed from the beginning that God wanted to heal her and use her story to impact the lives of many. But, to live through miracle after miracle is actually quite overwhelming.

Another thing I've noticed recently is these precious curls forming behind her big, floppy ears. That is exactly how Angelica Pickles' hair came in! I was excited thinking about another little curly top, and then remember the vision God had given our pastor about Myra.

He saw a three-year-old little girl with dark, curly hair dancing in the isles of the church. This was just a day or so after she was born, when they kept telling us she would likely die. I knew she wouldn't, but God confirmed that with the pastor's vision. I can already see a glimpse of that vision coming true! And it still seems so far off, such a stretch from what the medical world is telling us. But, my faith will not waver. I will not put my trust in doctors and specialists. I will only put my trust in the One who is capable of truly changing circumstances and truly healing!

I have my moments. I saw a precious little girl at a NICU reunion this past weekend, Bailey. I guessed her to be around 3 or 4, but she was in a stroller and not very verbal. She kept motioning for me to come bring Myra over to her so she could see her. She would pat Myra's back or touch her head. Then she would pull the sling tail or my hair until her father stopped her. A few moments later, it would start over again. Love on baby, smile and then pull on Myra's bonnet strings or pull my shirt. I wasn't bothered by it. I would kneel down each time she asked and talk to her. Her mother eventually told me she was six. I never asked why she was delayed. But, as I walked away I asked God to bless that family and to touch Bailey. And my heart hurt for her. And I selfishly asked God to allow Myra to have greater abilities. And my heart turned toward the "what ifs" that are way to dangerous to visit. I still have those moments.

But, then later tonight I was watching the International House of Prayer webcast (at 4am with Myra) and watched a teenage boy be healed of vision issues. And I wept and prayed for Myra's vision. And God gave me a peace about her development and abilities. A promise that He has a greater Plan. A reminder that He loves her more than I could fathom. And empathy for my aching mother's heart. And I had peace and love and joy. And my whole body yearned to just praise Him and sing to Him. So I did. Those are much better moments.

So, we are 9 months into the two greatest journeys of our lives, the one with our miracle baby girl and the one with our Heavenly Father. And we have so much to battle, so much to defeat within ourselves and, also, so much to gain. It's the gaining I must focus on. And the battles I don't have to fight alone.

Myra enjoying Tummy Time

I am still a little rattled since Myra's birth. It took me 9 months to get back to full working order after Boo Boo - menu plans, cleaning routine, spiffy house, kids in line, brain in order...for the most part. At nine months post with Myra I feel like I'll never get there. My house is a mess, I struggle to get more than macaroni and cheese or quesadillas on the table, the cleaning can't come until the clutter is gone, my brain is spinning constantly and the kids, well...they aren't too bad. Everything affects something else and it's a domino affect. I can't pick up the office until I get rid of half of the book in there. I can't put extra unused toys away until we clean out some old toys from the totes in the basement. I can't put away my clothes until I buy a new maternity tote. There is always something else to do before I can move forward. A vicious circle. Vicious. Such is life, right? Ugh.

Despite the house and current routine, I MUST get school up and running as soon as the two older kids are home from Clubhouse. My plan is to finish the current history/science curriculum (MFW Adventures) by December so we can start our Galloping the Globe study in January. By then all the math and language we are behind on should be done and we'll have Jan-Aug 2011 to catch up for the 2011-2012 school year. I'm looking forward to creating that curriculum, but also not. It will be a TON of work. But, my kids are worth it. =)

So, my next two weeks are full! Hoping I'll still get some time in the sun with my 3 littles that are home right now. And, I need to go visit my new niece again soon! The onesie I got for her said I was her "BFF" so I gotta act like one!

Myra and my niece Avery, 9 months apart

Here are some random photos from Father's Day, the NICU reunion we attended and Mr. Prince and the kids iceskating at Clubhouse:

Mr. Prince and the Klan on Father's Day

Mr. Prince and Myra

Cheesy Boo Boo lovin' him some icecream

The Klan all painted up!

Mr. Prince helping Sid the Science Kid

Mr. Prince, Sid and Princess Pea

Mr. Prince helping Princess Pea,
she wouldn't go out on the ice without him...

Happy Summer Time!

I am a Proud Aunt Once Again!

2010-06-22T05:38:00.000-07:00

Mr. Prince's sister, Sarah, had her baby on June 21st! It was her longest labor and third child. She has two little boys named Josiah (4) and Logan (2). She had been contracting all of Sunday and decided to go into the hospital Sunday night. They didn't record any contractions, but her cervix was 3/3.5cm and they decided to let her walk an hour and see if her cervix was changing. After an hour, her cervix was a full 4cm, but the on-call doctor decided to not admit her and told her to call her midwife in the morning. She was frustrated, but I went home with her figuring she would just get some rest before the morning. We got home around 2am, but at 3:40 starting timing her contractions. They were 2-5 minutes apart for a while and starting to get intense. Then, she went potty and things started slowing down a bit, but contractions were never really more than 11 minutes apart. Through the early morning, contractions started to get regularly 8 and 9 minutes apart and she just tried to rest. Around 8:45am we headed into her midwife's office and she was 6 cm dilated! The midwife thought she would go quickly, so immediately sent her to Dupont Hospital next door to get some antibiotics started for GBS.

It wasn't until 2pm that they broke her water and shortly after, gave her an epidural. Prior to breaking her water she was still 6cm, but immediately after she was already 8cm! Her contractions weren't really picking up and they upped her dosage of Pitocin a few times. Still no contractions. At 4pm she was still 8cm. Finally, around 7pm she was fully dilated, basically with no contractions?! She didn't feel pressure, but when she got into position to push, apparently they could already see baby's hair! Two pushed and Baby Avery "Ava" Laine Barbara Exford was here! She was 8lbs 2oz, 22in long born just a little after 7pm. Laine is Sarah's father's middle name and Barbara is both Sarah and Brandon's mother's names. She is absolutely beautiful! Perfect chunky legs, a possible crooked pinky like her mama, dimples like Logan, and possibly reddish hair like her Daddy!

Proud Mama

Myra and her first girl cousin!

They already have a duet down!

Congrats, Brandon and Sarah! You did good!

Summer has Begun, but the Rest of Life Seems to Stand Still....

2010-06-11T12:06:00.000-07:00

I simply cannot believe that it's June. I'm still stuck somewhere between March and April. Myra is almost 9 months old, Boo Boo is two and Angelica Pickles is 4! Poor Angelica Pickles, we had to postpone her Fairy-themed birthday party because of how sick Myra has been on this ACTH medication. Us girls decided that, since Myra's immune system won't be 100% until September, we would reschedule and have a Fairy party for Brynnan's 4th, Myra's 1st and Princess Pea's 6th birthdays! And only ONE party for Mama! I think I got the deal in that arrangement!

I haven't had a chance to post Princess Pea and Angelica Pickles' dance recital photos yet. I left the hospital one Saturday to take them. They were adorable! Their entire class forgot what to do on stage, but they are just up there to look cute anyway, right?

They posed this one themselves!

Well, it's been a month since Miracle Myra has been on this ~~evil~~ mediation. Here are before and after photos:

Myra before starting ACTH

Myra 1 month on ACTH

Thankfully things have been going pretty good since we left the hospital on May 24th. Myra's potassium regulated by the 28th and the oral potassium and daily blood draws were finally over. She still has some weekly home healthcare to monitor her glucose and blood pressure, and we will have to start checking her potassium levels next week when we start to lower the ACTH dosage. She did get another double ear infection. I tried to get rid of it with some natural methods, but after four days things weren't getting better and we were going out of town at the end of that week, so we unfortunately had to start antibiotics.

I.hate.antibiotics.

But, that's finally over and she has been so happy and smiley this past week! She did another video EEG on Monday, June 7th and her neurologist said she saw NO seizures or Infantile Spasms! Wow, amazing new....right? Except, she is still doing the physical symptoms of the spasms...? She actually did them during the EEG, too. The neuro didn't really explain why she was still having the symptoms, but said she was likely to have partial seizures that were uncontrolled forever. Well, I really hate that they keep speaking that into my daughter, but besides that, this is exactly what she was doing with the Spasms! And if they ask me in a few months if she is still spasms-free, we will have NO clue! AND, if she isn't developing, we won't ever know if it's because she has started the spasms again, or if it's due to the underlying brain damage... Ugh. So, I sent a copy of her EEG to our neuro down at Riley and hopefully she will give me some more information. We see her on July 12th.

Happy during EEG

As for the rest of my life besides little Myra, it's a disaster. Homeschooling is so far behind we will likely start "next years" curriculum in January 2011. Hopefully by the 2011-2012 school year we will be caught up! My house is the worse it has ever been. It's not like me to have a messy house. Toys all over maybe, but not dishes piled up, laundry waiting for weeks to be put away in baskets, dirty laundry piling up, mail not gone through for a month or more, no vacuuming for weeks, bills paid a month late, bathrooms dirty, etc.... I seriously do not know how I will get back on track. I have great friends offering to help, but no one can do this work for me. I will probably have to utilize the home childcare lady who has been watching the kids for us to get some stuff done. Myra is doing so much better so she doesn't need held all the time, and she is getting back into nap routine and all that. So, that will help. Just imagine having a newborn for 9 months: diaper changes 8+ time a day, lots of cuddling, short naps, up on and off every night, nursing every 2hrs. It's exhausting for 3 or 4 months, let alone 8! But, I really do love my time with her, just can't take where that leaves the rest of me...

After all the hospital chaos, we took a quick trip to IL for the wedding of a dear friend of mine. I have known Linz for almost 20 years now! Sounds crazy just saying that! Can we really be that old? Anyway, all four of my own bridesmaids were in her wedding, too. We all did 3 wedding together back when the first three of us were married, and now Linz just got married and the last one, Manda, will get married in September! Very exciting year! Along with the birth of Bec's first born, too! Life is just moving so quickly these days.... Here are some photos from her beautiful wedding. I only agreed to take all the kids because both my parents and their spouses would be there to help!

PaPaw and Princess Pea

Grammy and Angelica Pickles (being a booger)

Grandmama and Poppy dancing with Boo Boo

Poppy and Boo Boo had some fun games going on the whole wedding

Mr. Prince and Myra - both gorgeous!

Angelica Pickles, Princess Pea and Miracle Myra

Ok, this was funny... Sid the Science Kid was very shy and nervous to go dance until 3-year-old Lily asked him to dance. She is the cutest, most outgoing 3-year-old I've ever met! Anyway, he agreed and they had a blast. I even heard her shout, "Sid, chase me!" and one point and he followed her direction. Until....

Miss Becca, who is also seven, introduced herself to Sid and decided that since they were the same age, they should dance together. She replaced Lily hands with her and off they went!

That was a true steal! And Becca and Sid danced the night away... That, or Sid chased Becca all night long while she played hiding games with her girlfriends and teased him to no end. He still loved it! Too funny!

And so summer begins. Watching Daddy play softball on Monday nights, walking to the fountain to play in the hot sun, visiting Grandma and PopPop, parks, picnic lunches, birthday parties... Mr. Prince is a math teacher at a Clubhouse school program for 4-5 weeks in June/July every summer. Last year Sid the Science Kid had a blast learning about the 50 states and the history of our country for his first year of Clubhouse. This year, my precious little helper, Princess Pea, was dying to go in the kindergarten class. So, I'm am -2 for the next 5 weeks! I'm actually sad about it. Though I can get some one-on-one attention with my littles, I will miss my helpers and the daily interaction with them. I went to Clubhouse yesterday to be with them on their first day and loved the kisses Princess Pea would sneak to Myra between activities and the smirks Sid the Science Kid would give me after he answered something correctly. This is my niche with them, teaching and learning. I love teaching. And I love the family bond it creates. But, I think these two of my kids would very much love school. I loved school myself. And sometimes I feel sad that they won't get that interaction that I had. Though, I know it's is more of a curse than a blessing, which is why I'm homeschooling. Still, there are things I can't provide for them here that I'd like them to experience, or things they can't experience very often. Kick-ball games, messy art classes, healthy academic competition with peers, obedience of authority other than myself, learning how to make a new friend, a school bus ride (yes, this apparently is very important to homeschooled children). So, being that my husband knows these teacher and students very well, it's a small town, and it's faith-based, it's the best environment I can think of to give my kids that "school" feel. It's not necessary, but it's fun for them. So, I'm all for it. We still watch the situation very closely and will adjust accordingly if we must. Last year, Sid did not go on all the field trips. This year, I like all the field trips and I will go with them on all the field trips. It's all balance. I could NOT do this every day for 9 months thoguh, NO WAY!

So, for now we continue to work on getting our life back on track and raising 5 godly little ones. It's hard work. But, oh how I love being a mom!

Finally Leaving the Hospital

2010-05-27T05:15:00.000-07:00

Well, we still don't quite have a solution to the extended hospital stay Myra had this month (you can read about it here). After a double ear infection, Rotavirus and dehydration, Myra's electrolytes would not stablize. We went home on oral potassium hoping to regulate it there, but both days we took blood after leaving the hospital the potassium came back High! My poor baby has never been ill up to this point (8 months) and I think the ACTH she is on for her Infantile Spasms is irritating things. We go back to the hospital this morning for yet another blood draw after lowering the dosage significantly both days, the potassium came back high. I'm thinking her body is just stabilizing on its own finally and she probably doesn't need the oral supplements.

In the meantime, poor girl can't sleep well at all and nurses constantly. And I'm not exaggerating at all! She was latched on for a whole 2 hours one day this past week! If she's not nursing, she is either fussing or sleeping. She has very little happy, or even content awake times. She won't sleep swaddled on the couch anymore either. She either sleeps in the sling or on me on the couch. I think waking her every 2 hours in the hospital has destroyed her lovely sleep pattern. She was one of only two of my kids that slept through the night (6-8hrs) before 10 months! Poor baby girl....

Hospital Stay, Day 16

2010-05-20T13:31:00.000-07:00

Background: May 3-5 Myra was at Riley Children's Hospital trying to get her seizures under control (see story HERE). We found out then she has Infantile Spasms and were to start her treatment the next week. The following Wednesday we were admitted into a local hospital to start the ACTH injections and stayed there for 3 days for preliminary tests and learning how to give the injections (May 12-14). We came home Friday afternoon and I attended a children's clothing resale and Homeschool Resource Expo that Friday and much of Saturday.

Saturday night, after the kids had gone to bed, Myra had an odd episode of gagging, strider breathing and looking like she was choking. She hasn't eaten for over an hour. We weren't sure if it was a seizure or if she was really having breathing issues, so I told Mr. Prince to call 911. The police arrived in, literally, one minute! It was amazing. And in less than 4 minutes we had 3 police officers and 2 EMTs standing in our disastrous messy living room. She had recovered from the episode, so none of them witnessed it. They checked her O2 levels and heart rate, suggested we go to the hospital to get checked out (which they have to do), but we ended up signing a releasing saying we didn't want to go. I had been in the hospital for 6 days of the last week and a half and wasn't interested in going to hear:

"Oooookaaaayy, what was she doing again?"
"Did you put something in her mouth?"
"So, she was choking or gagging?"

I knew unless they witnessed it, going there was not going to give me any more answers, and would just make me feel stupid and self-conscious. So, they told us to not hesitate in calling them back if we changed our minds or she did it again. End of story.

So we thought.

10 minutes later she did it again and it lasted longer. I delayed in calling 911 again because I thought she would just recover again. With the two seconds to decide, I thought we should go to the hospital even if she did recover and figure out what was going on. I grabbed the diaper bag, the EMTs ran in the house and said, "Let's go!" and we were off.

I've never been in an ambulance. Hope I never have to again, but it wasn't as scary as I thought. They put her in a car seat much too big for her (one that I'm not sure would even protect her in a crash) and monitored her all the way there. No sirens, no lights. It actually took them 5 minutes longer to get to the hospital than it usually takes me.....odd. But, at least I could watch her and not have her in the back of a car wondering if she was breathing or not.

They slowly made their way into the ER from the vehicle and we waited for staff to get off their rumps and get us a room. It was all very opposite of what you'd imagine. It was past 11pm at this point and Myra was ready for bed and falling asleep. Despite her wishes to sleep, many nurses came in and asked those irritating questions with a lack of belief in their voices, listened to her now normal breathing and normal heart rate, they drew blood, not once but twice because they forgot to get a level on her Phenobarbital, and basically made it their goal to not let her sleep I think. No one else saw an episode except the person who drew her blood. Go figure.

The blood work came back with elevated white blood cells, a sign of infection, and they started asking if she or anyone had been sick. No, no, no. She was admitted for observation for breathing issues and elevated white blood cells. They gave her a shot of Rocephin.

She had a breathing/gagging/choking episode five times that evening until she went to sleep for the night. Sunday she did it many more times and the nurses eventually saw it. Her heart rate always skyrocketed afterward and she always recovered within a minute or two. Very odd. Her pediatrician found a double ear infection and wondered if swelling or drainage was making her gag reflex kick in. We thought the Rocephin had started working because Myra pooped out of three or four outfits that day. Her fever never got above 99. We were still mostly baffled.

Monday her diarrhea continued and we ended up fashioning a "cloth" diaper over her paper diaper to save the few outfits I had left with me. She had a video EEG from 7am to 10:30pm to rule out seizures. In the meantime, her fever went up to 102.9, her breathing/choking episodes had stopped but she was almost in a constant gag. She wouldn't take her paci or nurse. We had to use her g-tube for feedings for the first time since the NICU.

Can I just say.... I.hate.pumping.

And I hate the gut-wrenching feeling that something so precious to me is being taken away or may have to end prematurely, which is what I've been told over and over. Myra shouldn't be able to nurse with her history. But, she is the daughter of a gracious, powerful God and therefore can.

Medical world, deal with it!

Off my soapbox...
Anyway, she continue to get worse all Monday. I showed the nurses her gagging, her sunken eyes, her lethargy, her blue hands, her tremors, her eyes rolling into the back of her head. Nothing. They seemed confused, but not concerned. I was, though. I asked to weigh her that night after seeing how tight I had to pull her diaper and how thin her thighs looked.

1 full pound less. 11lbs down to 10lbs...in one day!

The girl is already a peanut, she cannot stand to loose anything! I voiced my concerns all night with no return.

In the morning after blood work came back, two pediatricians from her primary's practice rushed in saying her sodium was super high and some other things came back abnormal from the blood work. They looked her over and pinched her tummy skin. It stayed, didn't go back to normal. They said she was.....drum roll, please...

Dehydrated!

Really? Hmm...I noticed that almost TWENTY-FOUR hours ago!! SO irritating!

So, she was brought immediately down to the Pediatric ICU (PICU) because they had such trouble getting an IV in on Sunday for the antibiotics they wanted to give her (tried 7 sticks before they quit). Pack up, move rooms. Once down there, the PICU doctors tried twice in her NECK (ugh!) with no success. They did sub-cutaneous IV fluid into a pocket in her back. After an hour of running the fluid and it being absorbed, they were hoping her veins would pop back up and they could set a normal IV site. 2 stick later, success!

Poor girl was so weak, slept through tube-feedings, still had severe diarrhea, and had been stuck over 10 times at this point. But, throughout the day her jowls starting coming back, her hands started to pink up, and she started to act hungry and suck on the wet sponge I had been wetting her mouth with for a day and a half. I told them she was probably ready to nurse just in time for some new results...

Myra has Rotavirus.

So, they didn't want me to feed her. They said her GI needed a break to slow down the diarrhea. Ummm, when she starts eating, won't the diarrhea just start back up again?? Dude, they have this diarrhea for weeks sometimes! Sometimes I think really good doctors lack common sense.

So, I continued to fight and a few hours later, when the doctor saw just how upset Myra was, he OKed me to nurse. By then she was so upset and I was so full, she couldn't latch on properly. Another tube-feeding. But, two hour later she tried again and kept crying after latching; I think her ear infection was still bothering her. I kept offering and by morning she nursed a full feeding....Praise God!

I had an awesome male nurse in the PICU, Kent. He has a special needs son and kept talking about special needs kids and their ability to withstand greater amounts of pain than the average child. He was very sweet, called Myra his little pumpkin and always stuck up for me and what I wanted. When the doctor originally came in to see Myra when I was requesting to nurse, she had fallen asleep from exhaustion and didn't look very hungry. He came in and assured the doctor that him and at least three other nurses would attest to the fact that Myra had been "angrily hungry" for over an hour now and that, Murhpy's Law, is only asleep from exhaustion. Love those nurses that will listen to you and understand you know your child better than anyone, no matter what medical degree you have!

The blood work Wednesday morning looked much better and the PICU sent us back to PEDS. They kept the IV fluids going through Wednesday night. I had some concerns Myra's heart rate was staying in the 60s and her temperature was 96.7 over and over. No one else seemed concerned, though. The pediatrician on-call did rounds on Thursday morning and said the IV could be discontinued and as long as her input outweighed her output, she could go home that day. Yeah! Angelica Pickles’ birthday was on Friday and I didn’t want to be gone… And I should mention, at this point Sid the Science Kid, Angelica Pickles and Boo Boo were now sick at home, throwing up with diarrhea. They visited me and Myra Sunday before we knew she was sick…. Lovely, huh?

Thursday afternoon rounds came and I voiced my concerns again about Myra’s low heart rate and temperature. They still didn’t seem to be concerned, but were concerned that she was sleeping more than the day before, nursing constantly and still seemed so lethargic. They said she should be getting better, not getting worse again. Doctor decided they wanted another round of blood work before she let me go home. Long story short, God intervened and allowed a mistake to be made in the lab so as to catch the fact that Myra’s potassium was dangerously low. They weren’t even going to run potassium tests! Myra has her own little angels, doesn’t she? So, potassium makes you sleepy and also affects your heart rhythms….

Really?

Again, another things they showed concerns about 24 hours after Mama!

We moved back to the PICU at midnight.

More sticks, blood work, IVs, up every hour for assessments and blood work. They were giving her potassium through her IV and by Friday morning potassium levels were normal, but a few other things were still off!

Good grief! It was never-ending!

Friday afternoon blood work showed a drop in potassium again, and we had another sleepless night of IV potassium and heel sticks. Saturday afternoon, potassium was almost normal….3.3. (Normal = 3.5-5.3)

At this point I was fed up with the ups and downs and seemingly no real steps toward going home or figuring out what was really going on. I kept mentioning the ACTH medication she just started and how it was supposed to mess with your electrolytes, but no one had any knowledge of the drug.

Saturday morning I had to leave Myra to take Princess Pea and Angelica Pickles to their dance recital, so a good friend came to take care of Myra since Mr. Prince was home with sick Boo Boo. While I was gone, they reset her IV in a new location and stuck her another 6+ times, finally, with success. Another God-incidence (instead of coincidence), my friend overheard the nurse talk about flushing Myra's IV with Heprin. Mandy somehow knew that Heprin was a blood thinner and also knew Myra had been bleeding so well earlier in the week that nurses asked if she was on blood thinners. So, she voiced her concerns over them giving that to Myra and they ended up switching back to the salin flush. I absolute believe God used Mandy in that moment to protect Myra from more issues. He is awesome!

Then, the doctor also ordered IV fluids and no more nursing or Pedialite. I was not going to allow my child to starve for no good reason after this torturous week!

I got on the phone with the doctor and we talked about why he would restrict her food (to allow the intestines to build back up the mucus lining to allow nutrients and such to absorb better because the diarrhea had stripped the mucus lining). I still didn’t think that was the answer to our problems and told him I thought he needed to be talking to my neurologist and researching ACTH to see how it is affecting her. He agreed to do so.

When I came back in the afternoon, I talked to the doctor after he did his research. He agreed that the ACTH could be complicating things. He said he was taking her off the IV, resuming her breastfeeding, giving her oral potassium, and had goals to try to regulate her potassium with oral supplementation at home if possible. He said if the ACTH was going to try to keep her potassium down over the next 3 months, we can counter that with daily potassium supplements. I have a feeling after the diarrhea is completely gone, her body will eventually regulate, but I don’t care to be in the hospital for another 1-2 weeks until the diarrhea stops!

Poor baby girl has been stuck over 30x in the last 7 days! I have cut off their attempts at getting blood from her arms. They are only allowed to do heel sticks at this point. I know I’m not the favorite Mama on the floor, but I thankfully have had some nurses who are parents themselves and really understand my side of it. I’m not one to hang my head and do exactly what they tell me to. And, I think that has only benefited my daughter so far. The resounding thing I keep hearing about parents of special needs children are that they have to constantly be an advocate for their kid.

So, call me Queen Advocate! I’m there!

Saturday evening her potassium had gone back down and they were doing oral potassium and IV potassium. They started running the IV late, which meant the third night in a row of IV meds, heel sticks, and assessments every hour.

I was done.

At 4:00am, after the second round of IV meds, I woke to them getting Myra’s blood. I didn’t stir too much because I know she can’t be calmed in the midst of the heel stick, but she seemed to be crying a little harder than normal. When I got up I saw the lady fishing in her arm again for blood! Boy, was I mad! I said very sternly that getting blood work from her arm was OFF LIMITS and that this mistake WILL NOT happen again. After the heel stick was completed, because (surprise!), they had no luck getting anything from her arm and just put yet another hole in her little being, I told the nurse that I didn’t care what the potassium levels were when they got them back. We were NOT to be messed with until she woke up herself in the morning. I knew her potassium could be low, but from the 6am blood work to the 6pm blood work we have no idea when her potassium drops, so I knew she would be fine for a few hours so that we could both get much needed sleep. The girl will never get better if she can’t sleep!

Ya know what, no one came in my room until they noticed Myra out of her bed at 8am! And they didn’t even touch her until 9, so she was able to nurse back to sleep for a while longer. Ahhhh, rest…

And I also had the good nurse back, Kent. He gave her her meds at 9am, and said he wouldn’t bug us again until the doctor came by around 11 and they had to get more blood. Those numbers came back good, potassium at 3.9, so we were transferred back to PEDS around 3pm. Blood work would be repeated Monday morning and if those numbers looked good, we could go home!

We had now been at the hospital for a full week, and 10 days if you add on the 3 day stay to start the ACTH. I have stayed in a hospital with Myra for 16 of the last 22 days. In this hospital stay alone I had stayed in the ER one night, 2 different PICU rooms and 3 different PEDS rooms, moving my stuff 5 different times. And, my poor klan at home! Boo Boo was still having diarrhea, but Angelica Pickles and Sid the Science Kid were feeling better. Princess Pea mysteriously has never gotten sick. We tested Boo Boo for Rotavirus to make sure we weren’t going to spread his virus to Myra or vice versa, because lots of Mr. Prince’s family has stomach bugs (and supposedly adults don’t get Rotavirus). Is it wrong to PRAY for Rotavirus? Only so that we don’t have to deal with diarrhea dehydration issues from yet another virus for Myra or Boo Boo…

I talked to the doctor extensively about the potassium. The IV potassium had caused some swelled hands and legs, I guess because it’s toxic to the veins.

Lovely.

Probably the reason why Myra whaled while it ran into her arm the 7 or 8 times they gave it to her…

The oral potassium was supposedly rough on the esophagus too, so they said to only use the g-tube for it, every 6 hours around the clock. No concerns she’ll get too much even when her body starts to regulate because her kidneys should flush out the extra. They will monitor her electrolytes every few days for a week or two and then probably weekly until the ACTH is out of her system and all is well. I also talked to the doctor about if we needed to monitor her heart while sleeping since it got low (54-65bmp) with the low potassium. Maybe that it would be a first indicator we need to recheck her potassium levels….?? That, and her low temperature… He didn’t seem to think it was necessary, but I think I’ll ask my primary this week anyway. In the meantime, nurse Kent saw that I seemed anxious that I couldn’t regulate her heart rate on my own. He told me to take the stethoscope from the PICU room and told me to just count a whole minute or two every day if I wanted and regulate it myself. How awesome is that! Kent is seriously the coolest nurse on the planet!

I’m also supposed to start “topping off” her nursing with an ounce or two of fortified breastmilk (adding formula to it for extra calories) to stretch her stomach so she can begin to intake more food daily. They said when her brain was damaged, it could have damaged the parts that tell her to eat more to grow and develop because she’s never taken more than 3oz at a time and always seems full. They hope (and I hope!) this will be temporary and just help her to realize she can eat more. I need to offer more baby food, too.

So, her daily medication schedule will look like this:

9am – ACTH IM injection
9:30am – Phenobarbital, Keppra (I might discontinue), Vit B6, Potassium
3:30pm – Phenobarbital, Prevacid, Potassium
9:30pm – Phenobarbital, Keppra, Vit B6, Potassium
3:30am – Potassium

Ugh, no more sleeping through the night! I think Mr. Prince and I will take turns and hopefully we can hook up her tubing before she goes to sleep so we can give it to her and not un-swaddle her and wake her up every night!

Myra’s ACTH is scheduled to be done August 12^th or so. Seems like a long way off… And I really hope this week was the worst of it! I was just realizing (with all this extra quiet time in the hospital by myself!) that once she is off this ACTH and her spasms are GONE (yes, they WILL be gone!!) that she won’t be able to start developing again until September some time. She will start to loose the steroid weights and start to get her personality back (so I’ve read) and then be able to start to develop neurologically. Unfortunately, at one year of age, developmentally Myra will be at 2-3 months. I knew she would have challenges and I knew she would likely be a little behind, but I didn’t expect to have a new baby for a whole year. It’s just a little baffling even typing it. I remember thinking when Boo Boo turned one, that he was my first baby that didn’t walk at his first birthday party… I didn’t care, it was just an observation.

Well, Myra has given us way more “firsts” than we could have every hoped or asked for. And, I just have to sort out all the good parts of that. I guess it makes the things your other kids can do a little more special. Made me think a few times this week (only in my head, of course) how cute my just-turned-four-year-old is when she is arguing with me. She has a wonderful little brain up there that has the capacity to make up some random concoction to convince me to give her what she wants. Irritating, but fascinating at the same time… And watching my just-turned-two-year-old say new words almost daily and give me an ornery grin when he’s eaten something off the counter that he shouldn’t have. I’ve briefly seen things from a completely different perspective. And though I know I’ll have to go back to “normal” thinking with my other kids in order to discipline them appropriately, I have a new love for my kids’ personalities and abilities. I don’t think that will change any time soon. And when Myra starts to do all these same things, how much more rejoicing there will be! And praise to the gracious God who continues to heal her!

Monday morning lab lady comes and I hold my tongue as she fails to truly warm Myra's heel for the heel stick. She had to squeeze the life out of her foot to get a small drop. Grr!! So, I was not surprised when Myra's potassium had since come back HIGH! I understand that, in general, heel sticks are not accurate for reading potassium because the clotting factor messes with the results. But, if you get a good flow and don't have to force the blood out... so far Myra's heel sticks have been accurate. That's great considering they aren't having luck getting blood from her arms anymore. So, I really wish I would have been the "butthead" this morning and told the lady to warm her foot longer. They had to recheck the levels with a arm blood draw and, shocking, they came out fine! 3.5!

So, my immediate thought was, I can go home!

Wrong....

The on-call pediatrician said he was changing her oral potassium to 3x a day instead of 4x a day so we don't have to give her a dose at night. Great! But, why exactly does that constitute me staying in the hospital longer? He said he'd like to do another draw in the morning. Good grief, people! I told him I have 4 kids at home who need me. I reminded him that the hospital was doing nothing for her other than blood draws and if I could monitor her heart at home, there should be no reason I couldn't leave and come back for a draw tomorrow.

We agreed that if a draw this afternoon comes out good, I can go home and come back in the morning. But, he said a heart monitor wasn't necessary. I seriously disagree, but I will just use my stethoscope (thanks, Kent!) and check her myself. I still think these doctors don't know anything about ACTH and underestimate its ability to really screw up an 11lb baby. I think she needs to be monitored a little closer. I think she needs her blood drawn every other day for probably a week or two until we are sure, and then every other day again as we change her dosages of ACTH. Maybe I'm just paranoid, but if something happens to Myra because I neglected to have her monitored properly, I would never forgive myself. And, why don't nurses and doctors get the age-old saying, "Mama knows best!"

Oh, and Boo Boo has Rotavirus. At least we know we don't have two viruses in the house! Now we just need to keep Boo Boo hydrated... Darn hospitals! I completely blame them on giving Myra this, and we spread it to the klan Sunday night before we even knew Myra was sick. Plus, no one we know or have been around has Rotavirus....so, I'm 99.9% sure it came from a hospital. Makes me worry about what else she could be picking up this past week! AHHH!! Breathe, MommyK, breathe...

So, for now I sit in my little hospital room, eating my ~~horrid~~ fabulous hospital food, awaiting the next assessment and blood draw.

Thinking of my littles at home….

Thankful for how God is providing for our family…

Proud to be Myra’s Mama…

I'll update soon.

New Treatment

2010-05-15T18:17:00.000-07:00

aInfantile Spasms are a form of epilepsy that does not respond to typical anti-seizure medications. Myra had already tried three medications before we realized these were spasms. There are currently only two proven treatments to stop IS; ACTH and Vigabatrin. Due to the side effects of vision loss with Vigabatrin and Myra's cortical visual impairment, we didn't want to potentially damage her vision further.

So, Wednesday Myra was admitted into the hospital so that I could learn how to give the ACTH injections and go through a handful of preliminary tests. She had a EKG done on her heart (all normal), an 4hr video EEG (still showing only modified hypsarrithmia), basic blood work, and a swallow study. Dr. Anxiety earned his name this week after Myra passed the swallow study with flying colors. He kept telling us that children with Myra's history (or children with cerebral palsy) often do not eat orally and he expected her to have problems with aspiration and solid food intake. I did not have any concerns and put off the testing even though he wanted it done within a month of seeing him. He was wrong and Mama was right. Mamas are almost always right, aren't we? =) So, nursing can continue with no concerns of pneumonia while Myra is on ACTH, yah!

Well, Myra has received 4 injections so far and she is already responding to treatment! After the first dose her spasms went from 100-150 in a cluster to under 100. After 2 doses they were under 50. After 3 they were under 30. And today I haven't seen her do them more than 15x in a cluster! We are so thankful things are changing so quickly and praise God that He is using this medication to begin to heal Myra of this seizure disorder. We are continuing to pray these spasms stop completely and the hypsarrythmia is discontinued for good after this 3 month treatment.

In the mean time, we have some side effects we are praying are minimal during these next weeks. She has been slightly more irritable here and there, but nothing unbearable. But, I have been told to look for high blood pressure, developing diabetes, electrolyte imbalances, extreme irritability, high risk for infection due to immune suppression, and massive weight gain that is only temporary. There is a 4% mortality rate when using this drug. But, God is capable of protecting her from these side effects and I feel a peace that He is going to.

I had a really rough day on Tuesday when I was originally supposed to go into the hospital, questioning whether to start this treatment or not. I went back and forth all day long, almost hourly, trying to decided between two worse-case scenarios: blindness (Vigabatrin) and death (ACTH). It sounds extreme, but it is an awful decision to have to choose between two medications that are both going to possibly be harmful to your baby in some way. You would never choose to hurt your child, and to be put into a situation to have to choose is agonizing. But, I decided that God knew this would be a decision we would have to make and He would help direct us. The more I thought about His ability to protect her, the more I didn't feel the weight of the decision. The more I didn't think about it as blindness vs. death. The more I started to feel peace that this medication would be one more step toward the healing we feel God is doing in Myra's life, and not life-threatening to her. So, I do feel peace about starting to give her ACTH. I still get this ill feeling in the pit of my stomach about 10 minutes after giving her an injection and tears still fill my eyes, but I don't fear for her life. I will do my part in the steps toward healing, but I will leave the end result up to God.

I have been away for 6 days of the last two weeks, so my house and kids are starting to show it. It's been another rough few weeks for us, but we've had a lot of support and help from friends and our church. We are very blessed with the friends we have. And we are thankful for all those lifting our family up in prayer during their own quiet times with God. He is faithful to hear us and respond. And He is responding. Your prayers are effective, so thank you so very much!

New Diagnosis: Infantile Spasms

2010-05-06T10:47:00.001-07:00

After a month of contacting my neuro here in Fort Wayne, seeing a neuro at Riley Children's Hospital, and still not getting Myra's 'possible' seizures under control, I was getting quite frustrated. After a bad reaction to a new drug this past weekend, I called both neuros Monday morning. Dr. Calm at Riley has moved to another hospital, so I needed to find a new neuro at Riley. As part of God's intricate plan, I got in touch with the "epilepsy specialist" at Riley, Dr. Z. After hearing a summary of Myra's history and current condition, she felt I needed to go to Riley's ER as soon as possible, be admitted into the hospital, have a repeat EEG and whatever other tests to figure out what is going on with her. It seemed a little extreme at first, but Mr. Prince and I just are wanting answers and figured this was the best way to get them at this point. So, I head down to Riley Monday evening (5/3/10). By God's grace Myra did not cry on the way, even though she had been crying almost the entire day.

I was in the ER from 11:30pm to 4:30am (which was filled with around 6 doctors/nurses/residents waking Myra every 30 min or so and her subsequently crying herself back to sleep after every one) and it was 5:45am by the time we were admitted and settled into our room, which we shared with another baby who was up and crying. Myra's white noise machine was our life saver while we were there and we fell asleep quickly. At 7:15 we were awaken by the nurses saying we had an EEG immediately. 1.5 hours of sleep was not adequate for either of us and the EEG did not go well. I'm guessing the results were inconclusive because we started a 24hr video EEG around noon that same day.

Myra after IV, not happy.

Sleeping in between doctors bugging her.

They glued a bunch of electrodes to Myra's head and I hit a button each time Myra had an 'episode' and they recorded her on camera, too. I could see the EEG running right next to another little girl's. It didn't look normal, but that was all my expertise could tell. My mom came to help for the night. It was a long night, but we got a few hours of sleep. In the morning they transferred us back to the infant unit in the hospital while we waited for results for 6 hours.

Video EEG

Dr. Z came in and said they have diagnosed her with what were called "Infantile Spasms." I had heard of these before and researched them myself and knew it wasn't a good diagnosis. Four doctors, including two pediatric neurologists, had seen these 'episodes' and did not think they were Infantile Spasms (IS). She has atypical EEG findings and atypical physical symptoms of IS.

Infantile Spasms are a catastrophic form of epilepsy that usually starts around 4-6 months lasting until around 2. They are abnormal brain waves which cause clusters of 'spasms' or specific jerky movements that each only last a few seconds or less. Children can lose developmental milestones at the onset of spasms and prognosis is better the quicker doctors get the spasms to stop. The intellectual prognosis for children with IS is generally poor because many babies with IS have neurological impairment prior to the onset of spasms. Spasms usually resolve by mid-childhood, but more than half of the children with IS will develop other types of seizures.

Myra's spasms have increased since they started on March 21st. They started with just one or two clusters a day of 1-3 spasms. They increased on week 3 to 4-5 clusters a day of 20-25 spasms. Week 4 she had 5-7 clusters a day of 50-60 spasms. She was given Keppra on week 4, and they decreased the spasms to 5-7 clusters of 20-25 spasms a day.

During the video EEG she was recorded to have over 10-15 clusters of 20-60 spasms (5/4/10).

Today (5/6/10) from 7am to 2:30pm she has already had 6 clusters totaling over 700 spasms.

Choices for treatment are few and all have the risks of some horrible side effects.

Choice A is Topamax.
This is an anti-seizure medication that has a small likelihood of helping control IS. It would be a month before determination could be made whether it was helping control the spasms. Side effects of Topamax are kidney stones, UTIs, decreased sweating, suppression of cognitive abilities, decrease in appetite.

Continuing spasms for another month would carry it's own side effects.

Choice B is Vigabatrin.
This is not FDA approved and only available in Canada. Side effects are changes in white matter brain tissue after MRI scan when treatment is stopped (inconclusive whether damage is done because most children already have brain damage and it's unknown what limitations they might already have), and significant peripheral vision loss in 1 in 3 children.

With cortical visual impairment, Myra may only have her peripheral vision in tact, so we are not willing to subject her to more damage.

Choice C is ACTH (adrenocorticotrophic hormone).
ACTH is supposedly the most effective drug for IS (60% will stop having spasms after treatment). But many children have a recurrence of spasms after 2-12 months. ACTH is given through injections twice daily. Side effects are serious and potentially life-threatening. Side effects are increased appetite and excessive weight gain in the face and trunk, high blood pressure, electrolyte imbalances, high blood sugar, changes in mental status because of high blood pressure, and bleeding from the gastrointestinal system. Weekly blood pressure checks and blood draws help monitor effects. Mortality rates are around 4%.

So, choices are bad, worse and horrible! I feel like we just got kicked in the gut while we were already down...

We have contact Dr. Z to start ACTH as soon as possible, given Myra's exponential increase in spasms in the last day. It will probably take a week to start treatment.

Please, please, please pray for Myra. Pray these spasms stop before we even start ACTH! I know God has used Myra's miracles in the past to grow many of His children and I'm praying He uses this opportunity as well.

Adventures with the Klan

2010-04-29T22:30:00.001-07:00

For those of you visiting my site for the first time, I thought I would introduce the Klan....

I am a stay-at-home-mother of five beautiful children. I have an education degree and plan to homeschool my children through graduation. I love to sew, crochet, knit and scrapbook, though with five kids it's hard to find time for my hobbies! Someday I would love to be a foster parent and an adoptive mom, too.

The Klan Leader is Mr. Prince. He is a 2nd grade teacher at a inner-city elementary school. He enjoys soccer, softball and street basketball and is an incredible father to the Klan.

Sid the Science Kid is my 7-year-old genius. He is obsessed with the solar system and the human body, loves soccer, enjoys being involved in Junior Bible Quiz and piano lessons, and will be entering the 3nd grade at Kellogg Academy this fall.

Princess Pea is my prissy little 5-year-old. She loves her ballet classes and says she wants to teach dance when she's older. Her other loves are drawing and reading. She will be starting first grade this coming fall.

Angelica Pickles is my spunky 4-year-old. She has loved babies since she was a baby herself and her favored doll is her beloved Asian doll, "Baby Tui". She has never been afraid to stand up to her siblings and often times is the leader of the pack, mostly by force. Force meaning "loud scream". She can be quite sweet, but still often shows her out-of-control-three-year-old stage.

Boo Boo is just 2-years-old. He is a very laid back baby and enjoys being the clown of the klan. All of his siblings adore him. His loves are balls, penguins, giraffes, and cars. He just 'goes with the flow' with a smile on his face.

Miracle Myra is the baby of the clan, just 7 months old. She's had a rough 7 months, but is progressing and we are still seeing many miracles in her life. She was asphyxiated at birth when her heart rate dropped and has since been diagnosed with microcephaly, epilepsy, cerebral palsy and cortical visual impairment. She is also very laid back and a very happy baby. She is our little miracle and we are so happy to have her.

Well, there is the formal introduction of the Klan and it's Leader. Hope you enjoy the Adventures!

Myra's Summer Wardrobe

2010-04-27T10:49:00.000-07:00

We hit a Carter's store when we visited Indy last week. We don't have one around here. I had fun emotional-shopping after our meeting with the specialists!

Myra is going to be my hat girl. Not only do I like dressing her up more than my other girls because it's easier, (I used to think tights and dresses and hats were just a pain when a child was sitting up and crawling) but it also makes her small head less noticeable. I'm not quite ready to explain to everyone I run into about Myra's history. And I am stopped A LOT just because I have five little ducks in a row following me. So, here is the newest addition to her hat collection. I'm going to like bonnets better on her than sunhats because she will be lying down on her back most of the time. So sweet!

Most of these outfits are swappable...

My boys lived in these little one-piece jumpers.
I wish they made more that weren't dresses for little girls.
Love the monkey and skirt!

Loving these dresses! I still want to make some,

but some store bought stuff you just can't replicate!

There ya go, Myra's new wardrobe....

Specialists, Labels and Milestones

2010-04-15T21:27:00.000-07:00

I've been somewhat dreading this blog post...

Mostly because I haven't yet sorted out my own feelings, let alone having to think of everyone else's reactions to what I might share. I'm sure those of you who have read my blog know I'm a pretty detailed person, and you might get bits of information here and there from the sea of information that I type. But, there have been so many details given since last September, that I'm sure even Mr. Prince couldn't retell them like I could. But, that's me. There have been a number of times I've been sitting with a doctor in the last few months and have been asked if I have a medical background. No, but it seems to be I am getting a crash course in neurology, therapy, anatomy, etc! But, as people read and then talk to me, I see the small bits of information they hold onto, knowing many of them probably don't read all my posts. What I don't want anyone to do after reading this post is click away from this screen seeing myself or my daughter as I suspect most might. As a label. As someone to be pitied. As a tragedy. And remembering just a few words I mention. I know many still will, but I wanted to just say up front that God is not done with Myra, and no matter what label they place on her or box they fit her into, I know God has the ultimate say and all these experiences are purposeful in His Perfect Will.

Mr. Prince and I took Myra to see a Developmental Specialist and Neurologist at Riley Children's Hosptial this past week. We were hoping to gain more information about Myra's future and more explanation about Myra's current condition and development. We have not been happy with our neurologist here, and with Myra's vision impairments, I think even her therapists and pediatrician are at a loss in helping us teach and work with her to some extent. Sometimes I feel like I'm the only person in this state that has a daughter with a brain injury and visual impairments based on the lack on experience and knowledge these "specialists," and even certain organizations centered around these issues, have. It really is frustrating.....and sad. I know I'm not the only mom searching for answers.....

So, to make a long story short, we missed our neurologist appointment at 8am. We had 1.5 hr drive, left late and then arrived at the wrong location....it was lovely (hear the sarcasm?) So, we ended up waiting almost 2 hrs for our Developmental Specialist appointment. But, it proved to be a good meeting, despite what I might say about the doctor.

I'll call him Mr. Anxiety.

I really did like him, but he definitely had some interesting mannerisms. Mr. Anxiety gave us a lot of information about brain injuries, typical outcomes, treatment options, and so on. He spent lots of time with us, answered all our questions and was very detailed and knowledgeable. I definitely would trust Myra's care to him. But, he was also a little anxious and maybe somewhat aggressive in his approach. After a brief examination of Myra, he mentioned hand splints to keep her hands open. Yes, often times children with Myra's background have clenched fists, but 97% of the time (and when you aren't messing with her) Myra's hands are not clenched. So, splints are not necessary in my opinion. (And my physical therapist would agree.) Also, after seeing some of Myra's "tics" and her new "episode" he got very forceful and said, "What neurologist where you supposed to see today? See needs to see a neurologist TODAY!" He went on to mention the worse form of infantile epilepsy (West Syndrome/Infantile Spasms), of which I had researched extensively, and I did not think that is what she was displaying. But, I did agree she needed to be seen asap. He found a neuro who was willing to see her immediate and sent us on our way with a future swallow test to be done (to make sure she's not silently aspirating), a warning to stop feeding her baby food (of which I decided to NOT stop), and a follow up appointment in 3 months. All in all I like him and look forward to gaining more information from him. But, I do think we'll have to have some discretion and not jump to do everything he might suggested. He seemed to put her in a little box before we even arrived based on what a piece of paper said. A fear I have that everyone will do once they hear it themselves...

Cerebral Palsy.

Myra has been diagnosed with cerebral palsy. She was actually diagnosis at 4 months old in January by our neuro here in Fort Wayne, but we found out reading it on our exit paperwork at the office. Not a great way to get information like that. At the time we just ignored it, saying you can't actually diagnose a child with CP until they are two, which is what we had been told. But now, understanding the term better, we know it's just a description of how her brain is communicating with her muscles. Myra has weak muscles in her trunk/neck and tight muscles in her arms/legs. It's a description of how her brain is operating, it's not who she is.

Dr. Anxiety seemed to assume Myra will have all the same challenges many children with severe cerebral palsy have without considering she might be doing "better than expected" in some areas. Very irritating to me, but probably not uncommon. Another thing, and certainly not the last, that I'll have to let roll off my back...

We met with Dr. Calm, the neuologist, next. He never mentioned Infantile Spasms, but definitely thought the new "episodes" she had been having for three weeks were partial seizures, and also thought all of her "tics" and twitches were also seizures. We had been told after a 3 hour video EEG in March that these were NOT seizures by our old neuro, so it was very upsetting that these could still be considered seizure activity. Some have been going on for over 4 months now and this could mean she could be seizing over 100 times a day! He couldn't explain why the EEG would be wrong and also couldn't prove that they were seizures without another EEG. So, he just said that seizure or not, sometimes a change in medicine is a good thing. So, we discussed medication options and settled on adding Trileptal to her current Pheobarbital, in hopes we can wean her off the Phenobarbital soon. Unfortunately we won't see results for 3-4 weeks...

Poor Myra cried all the way home. We stoppped several times, succeeded in calming her, but as soon as her back touched the car seat, she started wailing again. Such a bummer because she did so well on my two other longer drives last week and did great on the way there, too. Unfortunately I think Indy is going to be a regular "vacation" spot for the next number of years.... We are hoping Myra will cooperate more often than not.

Dr. Anxiety talked about a great Cerebral Palsy clinic at Riley, mentioned wheelchairs and feeding tubes, walkers and therapies, talked about possibly not being able to nurse Myra anymore....it was all a little overwhelming. Cerebral palsy, microcephaly (small head), epilepsy, cortical visual impairment (visual impairment due to brain damage)....the labels are stacking up. Can God still be glorified in the midst of labels and challenges? I know He can.

And one such glorification....

Myra had a new milestone in the midst of all this overwhelming news! She played with her first toy! I bought some new Discovery Toy items for her and she looooves her octopus! It has a crinkle collar and she purposefully moved her right hand over and over to make the crinkle sound. It seemed much harder for her to use her left arm (something I've never noticed before) but nonetheless she touched the crinkle with both hands multiple times. I have a video, but I can never get them to upload on Blogger. But, here are some pictures!

She was very excited...

SUPER excited in this photo!

Both hands...

She even sucked on it....another first!

Another toy I purchased...musical instruments...

Loves these, too....Can you tell?

I have always said to myself that even if Myra is 6 months behind on all her milestones, it doesn't matter. It just matters than she hits them. But, my thoughts have changed a little. Of course I am praying and working with Myra to hit her milestones (and assuming she will get there and amaze everyone who knows her story!), but I now have other more important things to consider. Sight over blindness. Thank you, Lord! Cognitive abilities over mobility, if I should have to choose. Please bless her, God! What gives a child real quality of life? I still don't know the answer to that exactly, but I think I'm on a path to find out. One day at at time. One miracle to behold at a time...

No matter what, Myra will always be our miracle. God has proven his love to us over and over in the last seven months. And I have a feeling He has great plans to show us a love that many people don't get an opportunity to see on this earth. I think we'll need the constant affirmation, too.

And the moments I cherish most right now are when I hold my baby close and she nurses contently. When she's in the arms of her siblings and they see nothing but a new sister, a perfect sister. When the prayers at the dinner table for healing suggest the only answer could be "yes." When Myra smiles. I'm getting the impression these could possibly be some of the easiest months for a long time. I'm going to enjoy them and not look at what isn't there, but enjoy everything that is. Blessings... joy... love....

Boo Boo and Miracle Myra

Princess Pea and Myra have a very special connection

Boo Boo is Two and Jesus Has Risen for You!!!

2010-04-04T12:51:00.000-07:00

April 4th.....My baby boy is TWO! Unbelievable!! This one is hard for me because I've always treated Boo Boo like a baby, he's super laid back and sweet, and the boy gets away with EVERYTHING (because of the first two things I mentioned)! Boo Boo has the best little personality. I love squeezing him all day long....and he lets me!

Boo Boo was my first homebirth and I think I feel very connected to him because of that. He was also the first child I did babywearing with as an infant (I found out about the sling when Angelica Pickles was around one). And he was in the sling or wrap all.the.time. So, mix that with the sweetest boy ever and you get a strict disciplinarian Mom turned into a mushy Mama!! I love my Boo Boo!

Boo Boo is a smart little kid. I was starting to teach him his colors and I started with red. I had him get me a red block over and over. A few weeks later I asked him to get me a red block and he picked up a yellow one and said "Blue!" I didn't even know he knew that was a color!

"No, that's yellow. Go get me a red block."

He picked up a blue one and says, "Yellow!" How in the world did he know that color word, too??

"No, that's blue. Go get me a reeeeed block."

He picks up a plain colored block and says, "Blue!"

I just laughed. A few minutes later I hear, "Mama, look!" I turned around and he had three red blocks stacked up with a huge smile on his face. Coincidence? Possible, but that's also something Boo Boo would do. He's a jokester. He loves to make people laugh by dancing or being silly. He loves to sing "Tomorrow" from Annie and when he sees Mickey Mouse he always says, "Oh, Toodles!" His favorite animals are penguins and giraffes.....not exactly sure why, but as a 6 month old baby he would put up a bunch of animals on this rotating toy, and as it spun he only knocked down the penguins. And after he learned the sign for giraffe, he would find them anywhere. I remember being at little friend's birthday party before he was one year old and he was signing giraffe over and over. Mr. Prince and I couldn't find a giraffe anywhere and just smiled to agree with him. I think he knew we didn't notice it, and finally at the end of the night as I was leaving I saw this tall wooden giraffe figure that had been clear across the room. I couldn't believe he could see it from that far away and notice it was a giraffe. He also loves balls and could roll a ball back and forth at 5 months old and could play catch really well before a year. He still love playing catch, basketball or soccer. And he loves skipping around playing ballet with the girls, too. He gets along with all the kids and everyone adores him. He really is the "angel child" just like his Daddy was. And he looks just like Daddy, too!

For his birthday "party" we had Mickey plates and napkins and invited family over. He adores his two cousins! We got to have cake and icecream and play outside on the playset. A nice quiet birthday party....for once!

No laughing at my cake....I just wanted him to recognize Mickey,
and he did For Your Information!!

Cousin 'siah and Sid the Science Kid
Agelica Pickles and Cousin Logie
Princess Pea and the Birthday Boy
Cousin Logie is a super climber on our playset

Cousin 'siah and Boo Boo adore each other

Grandma K made Boo Boo his 2-year-old quilt (she does a baby quilt and a 2-year-old quilt for each grandchild) and she used penquins and Veggie Tale fabrics....Boo Boo's favorites!

We got Boo Boo another penguin, a book that has pictures that move, a wooden pizza set by Melissa & Doug (he loves our birthday cake set), a Mickey book set with little figurines, an alphabet/shape/color flip car seat toy, and a Fisher Price camera because he loves taking pictures with my camera.

Happy Birthday, Boo Boo! We love you!!!

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I tried to get some good pictures from Easter, but didn't have much luck....

Boo Boo's birthday just happened to fall on Easter Sunday this year. Easter is a special time for us to remember the sacrifice that Jesus made for us on the cross at Calvary. My little sister-in-law Norah did an amazing human video at church today that depicted Christ as he was taken, beaten, put on the cross, and laid to rest in a tomb. They also showed how the tomb erupted when Jesus rose from the dead. It was very powerful.

Christ's sacrifice is the only way we live in hope of a new and better life with our King. The earth is broken, but as Christ enters our life we also begin a new life here on earth. One with purpose. The world is not perfect and life brings challenges and hurt our way constantly. But if we put our trust in a God who saves, He can continue to form us to His image as we live this life to bring glory to Him and to win souls that will someday enter the kingdom of God. I am so thankful for Christ's sacrifice and the hope Easter brings.

Myra in her hand-made Easter dress

The girls LOVED their matching Easter dresses....

This is also a special Easter because the three oldest children have accept Christ into their lives in the past few months. Angelica Pickles started a random conversation by asking, "When will we die and see Jesus?" I explained that I didn't know when but asked her if she wanted to live in heaven forever with Jesus some day. We talked about the only way we can do that (confess with our mouth and believe in our heart that Jesus is Lord) and we talked about Jesus dying on the cross so that we could someday be with Him forever. She said, "I want to be with Jesus forever, Mommy." I asked her if she wanted to ask Jesus to forgive her sins, to write her name in the book of life, to lead her to do what God wants her to do, and to allow her to someday live in heaven forever. She just smiled big and said, "Yes! I want to do that!" So, we prayed right there in the car.

I found this sweet Classic Pooh bonnet and Myra looks fabulous in it!

The next day Sid the Science Kid approached me a little apprehensive and said, "Mom, can I do what Angelica Pickles did yesterday?" I asked him to explain what he meant and he went on to say that he wanted Jesus to lead his life and allow him into heaven one day, too. Him and Princess Pea actually said the sinners prayer about a year ago, but he said he didn't remember. I told him he was welcome to ask Jesus into his life and he chose to go to him room and pray alone. I asked him afterward what he prayed and it was very sincere. Princess Pea separately came to me and asked something similar and also prayed again that same day after a long conversation. It was a very emotional two days, to say the least!

Boo Boo's new Easter basket

So, this Easter is a special Easter for them. They got to partake in nailing a nail to the cross at the Good Friday service and we got them special devotionals for boys and girls that Mr. Prince and I are going to do with them a few times a week. I think one of the greatest blessings a parent can have is watching their children accept salvation. More than any other accomplishment in this world, eternal life is my greatest hope for them. I know they are young and will probably still accept Christ over and over in their lives as they grow and change, and will possibly still turn from him at different points in their lives. But, I have high hopes that they will see Christ in the lives of the family members around them and stay in the faith.

Do you believe in the hope of Easter? I pray you do...

Besides Easter service and a wonderful dinner at my in-laws, we had our own little Easter Egg Hunt at home and a few little treats in their Easter baskets. We don't do Easter baskets every year, but the tradition I want the kids to remember is that we always get a family game for Easter. I picked this Mickey Yahtzee up a few months ago and so far it's a big hit! The kids had a great Easter weekend and we have a busy Spring Break ahead of us!

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My random photo op of Boo Boo....LOVE IT!!

Easter Project

2010-04-02T21:11:00.000-07:00

I have always wanted to make my girls some Easter dresses, but never got on the ball fast enough to get them done.

Well, I did it this year!!!

I have been wanting to do this tiered dress since last summer when Grandma K shared it with me. Apparently, her Grandmother made a dress for Mr. Prince's oldest sister, RaRa, when she was a little girl. So, that makes it even more fun!

For money reasons, I had to go with some fabrics I had picked out last year for dresses. I happened to have pink and yellow butterfly fabrics, and similar pink and green flower fabrics that all coordinated. I knew I was going to make up a pattern for Miracle's dresses out of a combination of the fabrics.

Grandma K will hopefully help me with the button holes tomorrow. I'd rather not do them all by hand...

Angelica Pickles' and Princess Pea's dresses

Miracle Myra's dress

I had no idea what I was doing with Miracle's dress. I ended up just measuring her and making the first tier to fit around her chest and then making successive tiers like in the original pattern. I knew that would be easier than making up a shoulder pattern to fit her size. Then, as I was making some straps, I thought of using all three colors. I was going to tie them, but as I sewed them together, they just laid so nicely that I left them and just sewed them exactly the same onto the back. I also sewed a pink, green and yellow seam on both the top and bottom hem of the dress for some extra decoration.

Here they are, all three together!

The girls are going to be so excited in the morning! I'm looking forward to making a few more sets of matching dresses for all three this summer.

Palm Sunday Pictures and an Update on Myra

2010-03-29T07:00:00.000-07:00

These are a few of the pictures I snapped Palm Sunday.

Princess Pea showing off one of her favorite shirts and her new haircut....

Myra is now 6 months old and I have seen a huge improvement in her head control in just the last week! She can now hold herself up leaning against the couch for the most part and holds her head off her shoulders for minutes at a time. Good job, Myra!

Boo Boo....I think.....

2010-03-27T21:06:00.000-07:00

As I was playing with Boo Boo's hair today, I noticed just how very long it was. I was joking with Princess Pea that I could put it up in pigtails and he could pass as a girl...

Actually, when I'm in public, most people address him as a little girl! Now, this was when his hair wasn't this long also. Boy clothes, boy shoes, boy coat...and they thought he was a girl! Very annoying to me. He's pretty, but not THAT pretty... But, I got the same dumb comments when Princess Pea was a few weeks old DECKED out in pink, even in a pink car seat with a pink blanket, and people would say, "Oh, he's so cute!" AHHH!! What is wrong with people? Do they seriously not take the extra two seconds to LOOK at a child they comment about...??

Anyway, tonight I decided that if I can't convince them, I would join them!

Boo Boo sporting an old dress I made for the girls...

He thought it was hilarious!
Daddy did not.

I loved when Princess Pea's hair was cute and short like this...LOL

Ok, Ok....I finally cut it! Daddy's happy now.

Wonder if they'll still call him a girl...probably...

I decided to get Princess Pea's cut for the spring, too.

I think this is the longest it's ever been! Pop Pop and Daddy like the long locks, but they also don't have to DO her hair every day. Her hair is thin and stringy like mine and just mattes and flattens over night. It also has a slight wave that gets corky when long. Anyway, it's getting warmer and I prefer it shorter. And I'm the Mama! Or, as Angelica Pickles puts it, "Mom's the BOSS!"

I'll post some cute spring photos this week with her hair done.

I love the bob on her!

Bowling with Uncle Isaac!

2010-03-26T10:49:00.001-07:00

Uncle Isaac turns 33 today, and for his birthday he asked to take the kids bowling! Sid the Science Kid has gone once, but the girls have never been. It was a blast!

Angelica Pickle's feet were actually too small for a pair of shoes,
but after tears, she just wore some big ones.

Isaac teaching them how to bowl

All the kids had a combination of throwing/pushing to get the ball down.
And yes, there were bumpers!!

Princess Pea was bouncing off the walls excited when she bowled a few spares!

Sweet Miracle just slept the whole time!

Final scores: Isaac (62), Sid the Science Kid(68),
Princess Pea(67), Angelica Pickles(59)

Thanks Uncle Isaac for a day of fun memories!!
Happy Birthday!!

Adventures at the ER

2010-03-25T20:09:00.001-07:00

Where is the quarter, Brynnan? "Right here."

So, Angelica Pickles...my little mischievous, third-born child...decided that the pizza at dinner was not enough to fill her tummy this evening. So, she decided to EAT a QUARTER! Goofball!

She came downstairs less than 30 minutes after going to bed and said, "Mommy, I ate something I wasn't supposed to." I proceeded to ask her if it was a hairband or polly pocket clothes or a stick-on earring (common things I pull out of her mouth) but she told me, "It was moneys." Mr. Prince then took her upstairs to show her the different coins to ask which one she swallowed and she pointed to the quarter. After investigating further, he realized a quarter he left near the sink the night before was not there.

Lovely.

I called Grandma K and her pediatrician's afterhours number, but after an hour of waiting (and after reading a few blog posts about other moms adventures to the ER), I decided I wanted to bring her in anyway.

She was a little scared as she changed into some clothes. "What are they gonna do to me?" I told her they would just take a picture of her tummy and nothing would hurt. I think it was enough to scare her into telling me the truth if she was lying, so I felt better about that.

The x-ray showed it was already into her intestines, so that was good. Now, the fun part! We have to check her stool until it passes and possibly have another x-ray done in a few days. Oh, the fun of parenting! She gave us signs to watch for in case it obstructs the intestines, and we were off! Angelica Pickles looked sad and asked, "When are they gonna take out the moneys?" HA!

There is it!

She looked sad at bed and told me she wanted to poop it out right now. I made her feel better and told her we would throw a party when we found it.

So, anyone who wants to come over for the Poopy Party in the next few days, you are more than welcome!! =)~

Thanks, Angelica Pickles, for the many adventures in my life!

Myra is 6 months old!!

2010-03-24T20:10:00.000-07:00

Our little miracle baby is 6 months old today!

Wow.

Ever since we left the hospital the time has just flown by!

Myra is currently still on anti-seizure medication and will be for the first few years of her life. But, she is not having seizures and is very stable. We are so very thankful for this. She does have some facial "ticks," but we are hoping these go away as she grows. With one, her little eyebrow goes up like she's checking you out. It's actually pretty cute, but probably annoying to her. =)

Her pediatrician has asked us to supplement her with a bottle of breastmilk mixed with formula once a day. She is 10lbs 12oz and 23.5 inches long at six months....so very tiny! I have to say, we are still loving this tiny baby stage and are soaking it all up! Though, for her health we are praying and hoping she'll start to grow more soon. We'll be exploring solid foods this month and are hopeful she will take to them well. I will be consulting with a speech therapist hopefully soon. We are keeping her feeding tube in until we know she's going to take to solid foods well and starting to gain weight better. Her head circumference is still not changing significantly and she is currently 6 standard deviations from normal. We are continuing to pray her head will start to grow proportionally as her body starts to grow and that her brain will continue to function and develop. Please pray with us.

Right now Myra is seeing a wonderful therapist through First Steps and is progressing, but fairly slowly. She is gaining more control of her head and neck and (when propped with arms extended) is able to roll over! She loves soft toys and blankets and smiles when you place something in her hand. Her vision impairments do not allow her to be able to reach and grab for toys, but she will hold a rattle in her hand and react to the noise. She loves music, too. And her favorite song for us to sing is "Amazing Grace" and I really need to learn all those verses! Kyler calls it the "magic song" because she almost always immediately calms when I sing it. She is very sensitive to smells and voices when people hold her and will react negatively if she isn't comfortable. I think a few of her favorite people are Gracelyn, Grandma K, Grandmama, Uncle Benji, Uncle Brandon and PaPaw.

**I tried to upload a video of Myra rolling over and smiling at PaPaw, but I can't get it right now. I'll try again later...**

We are so lucky to have Myra. I have grown tremendously throughout these last six months. Growing has its pains, but they are worth it. We are looking ahead expecting great gains and great miracles in Myra's life. Looking forward to what these next six months will bring for all of us... Here is a look back on the last 6 months...

Myra Annette born on September 24, 2009

1 month - Finally home from the hospital!!

2 months

3 months

4 months

5 months

6 months!

We Love You, Myra!!

Showers, Funerals and Deep Thoughts

2010-03-21T16:11:00.001-07:00

It's been an emotional week, to say the least. 1) I went back to my hometown for a baby shower and wedding shower of two of my best high school friends. There were five of us girls who were really close through school and have remained in touch. We were together again after a long time. 2) Grandpa P (Mr. Prince's maternal grandfather) passed away the Sunday I was out of town. Services were Wednesday and Thursday and we spent lots of time with his siblings and extended family this week. 3) And after being in large crowds of people who love to google over babies, it was an emotional roller-coaster when telling people how old Myra was, them mentioning how small she was, and in some instances noticing the "differences" in her and other children they know her age.

Me, Becky's sister Heather, Becky (mom-to-be), Amanda, Cory (hostess), Lindsey (bride-to-be)

The wedding and baby shower were great! Much more sophisticated than others I've been to. =) At the baby shower there were Mimosas and fancy keish and the entire wedding shower was a wine tasting event. We even went to a winery for the Bachelorette party! I tried 9 wines that Saturday and actually found ONE I liked. I bought a bottle for Mr. Prince and my anniversary in June. I can count on one hand how many alcoholic drinks I've tried, and only ONE have I ever liked! And, it's not even made anymore...go figure! It was great to see my girls again....and ALL together! That doesn't happen very often. I used to visit home 4-5 times a year when I had 1-2 kids, but after #3 came along, the visits have dwindled down to a long summer visit and Christmas. Though, after Myra's hospital stay we didn't even go home this past Christmas and this was the first time all of my friends had even seen Myra! I've been known to be a baby-hog, so I'm not sure if they all even got to hold her, but it was great to visit and just be with them all day long. As a mom of five, I can't even remember that last time I got to have a Girl DAY! Sid the Science Kid and Miracle Myra were the only kids I brought on the trip, so it was a nice break...sort of. Would have been better if I had someone to nurse Myra in the middle of the night..... A mom can dream, right?

We had the baby shower from 10am-12pm and then the wedding shower was from 2-4pm at Cory's house.....

Becky looked adorable in her brown dress! (I totally want one for a future pregnancy...ha) This is the best picture I could find with her belly in it. Her mom and sister and her are unmistakingly related. It's a good thing!

Here is me and Lindsay at the winery.... Isn't she fab?
We all used to say we would stay friends, despite the known phenomenon that you move past your high school friends and lose touch. Well, we've beat the statistics thus far. 10 years! I think that's pretty impressive. Love you, girls!

I was able to visit in IL a few days longer since Mr. Prince took bereavement leave most of the week. I had a good trip home, a nice visit with a friend on the way, and was home in time for the visitation on Wednesday for Grandpa P. It was great to see family we don't see every day and remember Grandpa together. I found it amusing the priest prayed, asking God to allow Grandpa into eternity. All I can think of is how's he's already been there for a number of days, days which have no time restraints there. No need to ask, Kyler made sure Grandpa knew Jesus before he passed. *smile* I didn't attend the mass and burial on Thursday, but all Grandpa's grandsons wore one of his bow-ties as pallbearers. They looked great. I look forward to visiting the grave-site this spring and seeing Grandpa and Grandma laid to rest there together. I will think of them often and remember their legacy. One in which I could never live up to, but one to copy my life after. You will be missed Grandpa P...

I am still a little uncomfortable around "normal" babies Myra's age these days. Yeah, I've been there four times, but seeing the view from the other side of the fence is an eye-opener. Now, when I see the little boy at the Library on permanent crutches due to Spina bifida, I smile at him...and the mother. And I think about how awesome it is that this little boy has the ability to walk. And I tell him he is as fast as SuperMan on those crutches! And he smiles big. And when I see a little girl with thick glasses reading at the table, I think about how adorable children are with glasses and how awesome that she can read the small print in that book with the technology of today. And I even think about the moms with "normal" babies and children that I pass. That they have no idea - like I did for 6.5 years - that there is this whole other world of moms with children who have some type of special need. And I thank God for their child's perfectly round head that is growing and developing. And I pray they someday completely understand the blessing that they have. And I pray for each and every swollen womb I see. That they do not have the same experience that Myra had. That they are healthy. We all say we want a "healthy" baby, but then discuss that we really want a boy/girl, green or blue eyes, a tall football player or a graceful ballerina, a doctor or a nurse.... I pray for health above all else now. And I go home and kiss my own four perfectly round heads and even the slightly warped balding one. Just a whole new perspective.

I think as Myra gets older and her delays become more apparent and her small head more noticeable, I'm going to have to come up with some brief explanation for strangers. I know they'll ask. I know they'll pry. I don't mind so much if I can maybe educate them. Maybe ease their uncomfortableness with people with disabilities. And people with big families. I have no idea what that little synopsis will be yet, but I'll have to work on that soon. Of course, I have no idea what Myra will be in the future either, but I have extremely high hopes! =) Regardless of what is going on today, God moves in our lives daily and has shown His ability and desire to heal Myra in more ways than one. I expect miracles. I think I always will.

I have been doing some research this week on visually impaired infants. Did you know that 90% of a what a child learns in their first 3 years is through vision? Wow. So, now I'm looking into how to teach a child with visual impairments. I do believe that Myra's vision will improve (so do the doctors), but I have to still have to teach and interact with her where she is at right now. So, researching has begun. I read visually impaired or blind children will be behind developmentally, independent from their intellectual abilities, simply because they need to be older to understand this dark world around them before they start exploring it themselves. They will often not reach for objects until 12 months, and things like crawling and walking cannot be achieved until they reach this point. They are delayed in holding their heads up because they don't have the visual clues to tell them to do so. So, now we have no idea if Myra is behind due to her vision or due to neurological issues. Annoying. But, I thankfully have been doing some things right - like showing her different textures and listening to different sounds/music - but I feel like I have a lot to learn. I hope it doesn't come to all that I've read - braille books, walking sticks - it's all a little overwhelming if you read too much and think too much. And, I DO read too much and think too much sometimes...

Myra's journey keeps bringing me to new forks in the road. I feel like I'm getting further and further away from my old life as I explore this new land and learn this new language. And, I feel like I won't be anywhere for too long. That there will always be new forks in the road. New languages to learn. New people to meet. I've never been a traveler. Sure, I'd love to see Spain or Paris. But, I don't care to spend the money, book the hotels or find childcare. I'm happy with our little house in Indiana. But, apparently God wants me to learn how to travel in a new way. Chase him through the tall grass and rocky creeks. I'm trying, but my shoes are new and stiff and I keep having to take them off and take a break. I've even tried to find my way back home by myself a few times. Back to the familiar. Back to the days when my other six month olds were sitting up, filling bibs with drool, chewing on toys, laughing as I play peek-a-boo. I got majorly lost and had to listen for Him to find my way back. Sometimes I walk, sometimes I run and sometimes I drag. Sometimes I enjoy the new flowers on the path and sometimes I curse the unfamiliar winding in the road. But, I know He'll always be there. To lead the way. To carry me when my burden is too heavy. Too lay down his robe so the path is smooth. I depend on that. I probably would just make a tent and stay somewhere if I didn't know He was leading me and preparing the way for me. It's a new journey, but isn't every journey a new one? And if we look back at the journey and find ourselves closer to Christ, doesn't that make it a Great journey? So, I'm on probably one of the Greatest Journeys of my life. I guess that makes it all worth it.

Ginny Owens' song says it perfectly....

The pathway is broken
And The signs are unclear
And I don't know the reason why You brought me here
But just because You love me the way that You do
I'm gonna walk through the valley
If You want me to

It may not be the way I would have chosen
When you lead me through a world that's not my home
But You never said it would be easy
You only said I'd never go alone

Cause I'm not who I was
When I took my first step
And I'm clinging to the promise You're not through with me yet
so if all of these trials bring me closer to you
Then I will walk through the fire
If You want me to

Olympics 2010

2010-03-10T09:16:00.000-08:00

Sid the Science Kid is 7!
Here he is showing off all his goodies from his siblings on March 4th.
(Notice the completed Legos...they were done within minutes of receiving the gifts!)

After much discussion, Sid decided he wanted an Olympic Birthday Party! Mommy didn't want to find toys to entertain a bunch of boys, so we decided planned games would keep them moving and keep our house in order. =)

The Cake

I was originally going to do five 8in round cakes to make the Olympic rings,
but decided MnM rings were good enough.

Sid's paper plate project. Turned out good!

The decorations.

I'm not too much into streamers or other fancy decorations. A few balloons and a nice cake are usually all I have, but these flags were a nice touch (along with an Olypmic Dream banner) and will be used in school next year.

The Olympic torch.

None of the kids quite got what this was, so I didn't do the Olympic torch lighting at the beginning of the party like I had planned. It's a Wiggles microphone, so I used it to announce the medals at the end of the party....until it irritated me and I quit using it. Goofy project.

There were 8 boys and 1 girl
(Sid's beloved girlfriend...the one he said, when he was five,
that he was going to marry her in 13 years....HA!)

I had Olympic music on when people arrived and the kids picked a country and flag to color that we would tape onto their backs. We had 6 Olympic games to compete in. I think the kids did really well keeping a good attitude about "winning" and such. I think many were still a little young to really care, so that made it nice.

Oreo Stacking

Cousin Josiah

Birthday Boy

Marshmallow Stuffing (Mr. Prince's idea...)

Cousin Connor

Friend Simon

Friend Samuel

The Beloved Laela

Should-have-been Gold Medal Winner, Israel, with 5 marshmallows!
(He represented the country of Israel....go figure!)

Uncle Brandon wanted to show the boys how it's done...

He had 15 or so, until he gagged himself....HA!

Pizza Break!
Each boy represented a different country, but of course the Birthday Boy represented the U.S.A.! I actually had to convince him to do so. He originally wanted to represent Mexico....??

It was so nice, the boys even got to play on the playset Mr. Prince put up last Spring!

Happy Birthday, Sid!

These were the handmade medals I put together. They were adorable!

Oreo Stacking Medal Winners
Instead of a bouquet of flowers, the kids got a bouquet favor with fun little treats and a paper trophy with their name on it.

Marshmallow Stuffing Medal Winners
(I actually handed out the wrong medals here...1st and 3rd were switched, but I chose not to fix it so as not to upset anyone...oops! Sorry Israel!)

Balloon Challenge Medal Winners

For the balloon challenge each contestant had to pop three balloons and follow the directions on a piece of paper inside of the balloon. Things like "hop 3 times" or "Sing Happy Birthday to Sid." What was funny was Sid the Science Kid sang Happy Birthday to himself....Twice!

Milk Jug Bowl Medal Winners

For the Milk Jug Bowl you had three chances to bowl down six empty milk jugs. The winners had the most jugs down in their three turns. Connor knocked down 14 out of 18!

Basketball Medal Winners
Many of the boys had the same basketball score, so we just choose three winners with tops scores and made sure everyone got 2 medals. It was really the only game we "rigged." =)

Obstacle Course Medal Winners
We had a small obstacle course through the lower half of the house that included jumping jacks, soccer, tunnels, basketball, summersalts and a puzzle at the end. I think they enjoyed it. Go U.S.A.!

At the end, we awarded the Birthday Boy with the Olympics 2010 Trophy!

Sid the Science Kid got some more great building toys and books/puzzles. He had all the Legos done within an hour of the party ending. And Mom and Dad forgot to even give him all his gifts at the party! So, he got his Comic Bible, daily devotional and Armor of God play armor later.

I think the party was a hit and everyone enjoyed themselves. I have a feeling this will be the first birthday party Sid the Science Kid will remember.

Happy Birthday, Sid!! We love you!!

Visiting Grandpa P - this time with Pictures!!

2010-03-09T12:07:00.001-08:00

Well, we were thankfully able to visit Grandpa P again this week. On Sunday Grandma K called and told us we needed to come say our goodbyes as soon as possible. With a birthday party to plan and execute and going out of town on Monday for Myra, we weren't sure if we'd make it. We are thankful he's held on long enough for us to!

We video taped the visit and Grandpa said all the things he usually says. Talked to Mr. Prince about being a good cowboy and eating his beans (from childhood), told Myra she was sweet just like her Mama, asked a few times if Myra was Mr. Prince's baby and if she was #5 and then mentioned he knew she probably wouldn't be the last.

I love Grandpa's voice. I'll never forget his voice. And I hope I hear it again this week.

Ezekiel kissing Grandpa - he saw Grandpa kiss Myra and wanted his own lovin'!

Mr. Prince and Grandpa - this is the closest grandparent to Mr. Prince
and he will dearly miss him...

Grandpa loves babies, and Myra is no exception - he even got to nibble her ear this time!

All the kids wanted to hold his hand, but were wondering
why he was bandaged up and bleeding. They don't quite understand.

Kyler has developed a special love for Grandpa and keeps asking to visit him,
I think because he knows he might not see him again.
He was happy to know Grandpa knows Jesus and will be in heaven when he dies.

Grandpa has been transferred back to his nursing home into Hospice care. He was drinking Pepsi when we visited him and I think had a beer last night! He's ready to go I think. He wants Grandma K to be there. We will visit him as a family tomorrow evening if he is still around.

We love you Grandpa!

Myra's Trip to Riley Children's Hospital

2010-03-09T05:49:00.000-08:00

On Monday we dropped off the other four kids and headed down to Indy, just me, Myra and Mr. Prince. It was actually a really nice trip to have hours of uninterrupted conversation with my husband! He made me laugh and inhale chocolate, we had fun testing the "no hitting" zone at Riley, and he even offered for me to sit on the floor and nurse Myra in exchange for the nice seat I was sitting on. Oh, wait... That wasn't a nice offer after all, but I did laugh until Myra stopped nursing and looked around seemingly irritated that I wouldn't stay still...ha!

Myra was surprisingly excellent in the car. It took her a while to fall asleep on the way there. Bad Mommy took her out of the car seat on the country roads before we got to the interstate to rock her to sleep. Once we got to I-69 she was out, transferred well and slept almost the rest of the way, so it was worth it. We only had to stop once on the way home and she thankfully didn't cry the rest of the way home after the stop, either! Makes me have higher hopes for my minimum five hour drive this coming weekend...

Myra was referred down to Riley Children's Hospital by her pediatrician. She seems to be tracking less and focusing more inconsistently on objects. She still only sees stark contrasts (black and white) and does not look at faces.

As far as the pediatric ophthalmologist appointment, there was a lot discussed and I'm trying to remember all the details. Dr. A was a really nice doctor, explained things well and wasn't threatened by questions like some other doctors. He examined her before and after dilation of her eyes and then consulted another ophthalmologist (Dr. P), too...which is awesome! Though Myra supposedly had the most brain damage in the vision area of her brain, this is what they told me:

-Myra's optical nerve looks small, but they don't see that as a problem. It's small for her, similar to her hair is brown or her feet are small. It's just characteristic of her. She is just small all around!

-If her brain was not reading a vision image at all due to damage, her optical nerve would look pale because it would have atrophied. Myra's looks completely normal right now. There still is a chance that could change in the next year, but I am not expecting it to. =)

-They know her vision is not normal, but thankfully were able to see that she does focus on things occasionally. Based on one test, they guesstimated that her vision is reading the large E on the vision charts. What I didn't ask was where kids her age fall in this particular category, but I'll try an ask my pediatrician next time I see her.

-Because Myra's vision issues have to do with her brain, glasses or surgery will be of no help to her. Awe, glasses on kids are SO CUTE!

-Myra's near-sided and far-sidedness is all within normal range. Children are usually far-sided until they are 7 and then that starts to improve. They expect her to do the same.

-Because of her microcephaly (small head), she is at greater risk of some lazy-eye type issues, crossed eyes or eyes that both go outward. These can develop any time in the first few years, but right now she has no issues like that. Thank you, Jesus!

-The GREAT news is, Myra has not developed nystagmus (involuntary eye movement), which is usually developed before three months if extremely poor vision or blindness is to occur. They said this was a wonderful sign that she could have useful vision in the future.

-They also said they see birth trauma brain injuries often and when the milestones and other neurological development kicks in, the vision seems to move right along, too. It's often times just delayed.

They don't even want to see her again for another year. They said at that point they will have a better picture of what her vision will be for the rest of her life. We will probably have a good idea ourselves by then, too. So, all-in-all it was a positive appointment. I wanted them to tell me she could see, and they did. And, they gave me high hopes to see improvement in the coming months, which I didn't expect.

So, another positive step for us. Hopefully many more to come! Please continue to also pray for her brain and skull to grow. Right now she is 6.3 standard deviations below normal. The further she gets, the worse the prognosis. Thank you for your prayers...

Crafty Things

2010-03-02T11:22:00.001-08:00

Well, with limited ability to leave the house these days since little Myra ~~hates~~ doesn't like the car, I've had to find extra things to do here at home. So, on a craft spree I went!

I relearned to crochet and made these adorable hats for Myra:

I also made this hat for Myra that was slightly too small, but Angelica Pickles found it just perfect for her dolls. I think Myra was upset we were giving it away, ha!

I saw these flowers on a friend's Facebook page and had to have one. I had no idea where to get them, so I just figured out how to make them. I have quite a few now to sell, too. I can also make bow clips and I bought these headbands to go with both the flowers and bows. They also look great on her crocheted hats and this brown hat I bought. My big girls love them, too.

I learned to stockinette knit to make these adorable leg warmers for the girls' ballet class:

I made another sling for myself in my two favorite colors. I can't believe there was a time that I ~~hated~~ didn't like pink!

I added a panel to my wrap to fancy it up a bit, but I think I might take it off and put a different, more stretchy fabric instead....someday:

I actually made these prior to Myra being born, but since I'm showing off my crafty self, I LOVE them......my diaper bags:

I posted a lot of my baby bazaar stuff on Facebook this past month and have sold almost all of it! These are the taggy blankets I have left, though I still have lots of fabric to make more diaper bags, slings and blankets someday, too....maybe.

I didn't finish my Valentine's Day project with the kids yet. We are making felt sugar cookies, with sprinkles and all! They are going to be so cute, but I found out I didn't have the right beads so I have to get back to the store before we move forward with them. I'll post pictures when they're done!

Now I ~~must~~ want to finish a year overdue project for my dear friend, Cherry. Her baby boy is now almost....how embarrassing to admit....14 months old....and she STILL doesn't have her diaper bag I promised her! I could give all the excuses about how Christmas 2008 was busy, I found out I was pregnant in January and was sick for weeks, how spring and summer buzzed by, how tired and pregnant I was at the end of my pregnancy, and then how my baby was in the hospital and it's been a long 5 months, but...I won't do that. I'll just say I am a BAD friend and I WILL finish it THIS month. Love you, Cherry!

I have hopes of other fun projects this Spring, like Angelica Pickles' birthday, summer dresses to match all three girls, floppy hats for the two littles.....sigh.....

For some reason it is very satisfying to make something with your own hands. And, I think having a FINISHED project when my life as a Mommy is full of unfinished business like laundry, dishes and diapers, makes me feel accomplished, too.

Verse of the Day

2010-02-25T13:42:00.000-08:00

Jeremiah 18:1-6

"This is the word that came to Jeremiah from the LORD: 'Go down to the potter's house, and there I will give you my message.' So I went down to the potter's house, and I saw him working at the wheel. But the pot he was shaping from the clay was marred in his hands; so the potter formed it into another pot, shaping it as seemed best to him. Then the word of the LORD came to me: 'O house of Israel, can I not do with you as this potter does?' declares the LORD. 'Like clay in the hand of the potter, so are you in my hand, O house of Israel.'"

Form us, O God....

Miracles!!!!

2010-02-24T19:40:00.000-08:00

I took Myra to the healing prayer room tonight at our church. I've been wanting to take her for a few weeks now and just never carved out the time to do it. It was a nice prayer time with three men I didn't know, but they seemed sincere and believed wholeheartedly in what they were saying. After I explained to them my prayer requests, one of the men asked, "Is this the little girl Pastor Ron had a vision about?" I'm not sure why he asked in that way, but I definitely think it was God's reminder to me of the promises we have already been given. And it made me feel so much peace as they prayed. Another of the men asked to share something with me before we prayed. He said he was told his daughter would never talk, walk or eat by herself when she was a baby and that she would be institutionalized before she was a teenager; but, that she is now 31 years old, takes a bus to her job at a sub shop downtown, takes the bus back home and is doing well. It was very encouraging. And what are the chances that someone with such similar circumstances would be in the prayer room tonight? Only when God is in control.

The men prayed for Myra, and as they did she smiled over and over. She fussed before and she fussed afterward, but during that prayer she was as high as a kite! It was sweet and I wonder what her little eyes could see of the supernatural world in those moments. We left and I found an empty room to read a few Psalms and some of Job's story. I headed home feeling good about the prayer time and feeling peace that God will do what He desires with Myra. I really held onto what one of the men said during the prayer....that God would continue to show His glory through Myra's life and that she would be a living testimony of who He is. Amen!

When I got home, I shared with Mr. Prince all that had happened. I expected it to be another normal night of watching American Idol, doing therapy with Myra and relaxing with my hubby. I was wrong.

As I started to do Myra's therapy I began to notice how incredibly loose her legs were. She only has slight tone issues in her legs, but noticeable enough. I began bicycling her legs and was just about to say something to Mr. Prince. Instead, I decided to see how far they could stretch. Before tonight, with bent legs, Myra's feet could only goes as far as her belly button. I used to clap the soles of my other children's feet on the side of their faces at this age, but I had never gotten anywhere close with Myra's feet.

In that moment, with no effort at all, Myra's feet touched her mouth!

I excitedly told Mr. Prince and asked him to quickly grab the camera. Here she is...

God has done yet ANOTHER miracle in Myra's life!!

God has spoken to me so clearly during this difficult time in my life. Each time I doubted, He has reminded me of His faithfulness, of His promises, of His power, of His love. Every week at church he has spoken directly to me. Every time I open His Word, it was written just for me in that very moment. Every time I cry, He comforts me. And every time I've asked for healing, He has delivered! And I think with each and every whisper, each verse and each miracle, God continues to tell me that He's not done with Myra. His miracles haven't stopped, His plan is not complete, His full glory has not been revealed in her life. I think He knows I need the constant reminders right now. And I am thankful. Oh, so thankful! Thankful for my beautiful daughter, for this trial that is bringing me closer to Him, for my healthy children, for the friends and family who are walking this road with me holding my hand, for my supportive husband... for everything.

For Everything.

This past week I believed I was given a vision. I am still asking for confirmation of this, but I'd like to share it.

The dreamed started out with me looking at a blog where a lady had made some beautiful flowers (I know, weird). These flowers changed into new flowers over and over on the blog, and then they began to make a picture of this scene. A blue country house with a porch and a willow-type tree in the right front. It looked a lot like this:

I was standing off watching this scene thinking to myself, "This country scene is beautiful! I would love to live here!" I kept watching and the house lifted off the ground and began to spin. On the first rotation I appeared on the porch by myself. On the second rotation, Mr. Prince was standing with me. Then the house stopped and landed, and children began to run out of the back door into the backyard. I remember thinking "Is this my family?" and "Is this a vision from God?" and I began to count the children.

1...2...3...4...5...6...

I didn't really recognized any of them because they were so far away. But, as soon as I counted 6 I was distracted because I saw a little boy running toward me....and he had a dark face. I remember thinking in my dream, "Is this the child I will some day adopt?" At that moment I realized I had stopped counting. There was never a definite number of children and when I looked back at the house, a neighborhood had appeared around it and I couldn't distinguish my own children from the neighborhood children. I remember thinking that I didn't have a clear picture of how many children I will some day have, but....all of a sudden I realized something.

All of the children were RUNNING....and there was no distinguishing "disability" about any of them. And I began to cry.

And when I woke up I was a little hazy and wondered in real life, "Was this a vision?" And in real life, began to cry. And, like I said, I'm still asking for continuous confirmation....but I wonder if I got a small glimpse of that confirmation tonight...

God is good.

No...

God is Great!

Visiting Grandpa P

2010-02-23T11:51:00.001-08:00

Grandpa P is Mr. Prince's maternal grandfather. He lives at a nursing home 30-40 min away, but ended up in the hospital nearby due to pneumonia. Because Myra HATES the car, this is our first opportunity to see him since her birth. Apparently, he has been asking to see "the baby" for quite some time...

We saw him on Sunday, but he was a little out of it and had an oxygen mask on that made it hard to talk to him. Today he was doing much better! Each of the kids held his hand and talked to him. I brought my camera, but because I was rushing to get the kids out of the car for the valet man, I forgot it! But, the images will be forever imprinted in my mind...

I won't forget how Grandpa smiled as my 3-year-old shyly smiled back at him as he told her she had beautiful blue eyes...

I won't forget the large, bruised, worn hands intertwined with perfect, chubby toddler fingers and the young, innocent eyes looking up at the wise, sad eyes...

I won't forget Grandpa squeezing Myra's sleepy face saying "don't you just want to eat those cheeks" and just staring at her with a quiet happiness about him...

I won't forget my 6-year-old who, as soon as he found out Grandpa was close to 120 (the days God limited human life to) told me we should ask him if he believed in Jesus, so that we could tell him if he didn't. I won't forget how impatient he was to ask him when we got there, nor how Grandpa chuckled as he said "Yes, of course....don't you?"

I won't forget the three different times Grandpa counted the children, always knowing one was "missing" from the five, nor how disappointed he was when I told him Paul was working...

I won't forget how sad the children seemed when I told them as we left that I wasn't sure when we'd see Grandpa again...if we'd see Grandpa again...

I won't forget my 5-year-old saying that Grandpa would be ok if he died because he would be with Jesus and Grandma...

I do so hope we see him again soon...and next time, I'll bring my camera!

Myra's 4 Month Update

2010-01-26T20:49:00.000-08:00

Mr. Prince and Miracle Myra

We saw Myra's pediatrician this week for her 4 month check-up. I truly love our pediatrician, and with being so unhappy with our other doctors, I'm glad I have her to trust and support me. She agreed that the neurologist should have given us more information that we were given and is working on getting some additional answers for me this week. Specifically, if her suchers are fused and the difference in brain tissue from the CAT scan to the MRI. She said we will be likely looking at a referral to Indy, Cincinnati or Chicago at around 9 months old to a new neurologist and possibly other specialists.

Myra is now a whopping 9lbs 9oz and 21.5 inches long! I feel like she is in a forever newborn state! But, who doesn't want their baby to stay a baby forever, right? Well....not exactly, but having her small and cuddly for a little longer has made things a little easier. I think as she grows, the small size of her head will become much more prominent and I'll be getting a lot more stares and questions. I'm not quite ready for that. Anyway, her growth curve is starting to fall, which was already below the charts. So, she suggested we fortify any bottles we give her with formula (which is only about once a week right now) and said if she continues to not gain weight well, we may have to fortify once a day or more. They will recheck her weight in about a month. Grow baby, grow!!

And, just in case anyone was doubting parts of Myra's suchers being smoothed out at the healing service we went to....her head now measures 33.9 (up from 33.6)! Based on what the neurologist said about her brain not putting pressure on the skull because it has enough room to grow inside right now, it MUST have been God that moved those bones!

Also, the eczema we have been suspecting since Thanksgiving now has a staff infection apparently. I wouldn't have any clue it was infected, so I'm glad she said something. Myra is now on antibiotics, which I HATE, but it's best for her right now....so I'll deal.

Paul and I attended a Birth Trauma class this week and met someone who works at a place called Turnstone, a center for children and adults with disabilities. She was telling us about social worker options, therapy options and additional programs we might be interested in. Yet another God-ordained meeting. I have been floored by how very clear God has been speaking to me through sermons, books, devotionals, people and prayer the last few months. He has made it very clear that He is not done healing Myra. So, maybe we won't need those extra programs after-all. Until then, I'd like to research as many options as possible and maybe attend their support group. It feels a little isolating to be surrounded by all perfectly healthy children, including my own.

But, for now Myra is doing physical therapy once a week and I continue the therapy daily. I am pleased with her range of motion and tone right now, but they are telling me we will see what her true tone issues will be when she starts more voluntary movements. But, we are working on grasping objects, holding her head up, rolling and tummy time right now. I think she's doing well. I see improvements. =)

So, the waiting game still continues. The doctors say her brain has been severely damaged, but I know the God that created her brain to begin with!! HE will do what HE wishes with her brain, and her life. And I, but a breathe that has been given the unique opportunity to see His hand at work so intimately, will just wait in hope and belief.

As John spoke of a blind man from birth and his healing: "...but this happened so that the work of God might be displayed in his life." John 9:3b

May Myra's life show God's work to all who hear...

Another Inspiring Story....

2010-01-22T22:32:00.000-08:00

This is taken from God's Little Devotion Book for Moms

Leslie was born mentally retarded, without eyes, and with cerebral palsy. Vegetable-like, he was totally unresponsive to sound or touch. At the age of six months, he was expected to die shortly . A nurse, May Lemke, was asked if she could care for him at home until that time. She did...for more than thirty years.

When May accepted baby Leslie, she accepted him as just that, a baby - no different from others - to be taught and loved. Year after year she cared for him, but there was no movement or response. Even so, she never stopped talking to him, singing to him, or praying for him. Music filled their home....still, no response. She and her husband bought an old used piano and put it in his bedroom. She pushed his fingers against the keys. With quiet faith, she knew God would someday help Leslie to break out of his prison. She rejoiced when he began to walk at at age 16.

Several years later, May and her husband were awakened one night by the sound of Tchaikovsky's Piano Concerto No. 1. Startled, they arose to find Leslie at the piano with a smiling glow on his face. Shortly thereafter he began to talk and to cry....and to sing. And at age 28, he began to talk in earnest. May's prayers were answered - in God's timing, God's way.

Myra's MRI Results

2010-01-21T11:34:00.001-08:00

Mr. Prince and I met with the pediatric neurologist this morning to go over her MRI results from last month. Unfortunately, I left with little answers to my questions and a little more anxiety about her condition. But, I'm trying hard to not be swayed by the medical side of it, knowing that God is truly in control and has the power to change anything we can see on a test. Yet, there is much pain knowing that something significant has happened to my little girl from just a few scary moments in the hospital. It's amazing that with today's technology that children can still be victims of birth trauma even while they are in the hospital under constant care. Life just gives us no guarantees, does it?

The neurologist started out by saying that there was severe brain damage done. She showed us the images of her MRI, which were very hard to understand at first. They splice the brain every few millimeters and take a photo. In the bottom left corner you can see what splice the photo is being taken of.

This is an image of Myra's brain. You can see the ventricle (area in the middle consisting of fluid) take up a significant amount of her brain matter. Also, all around the ventricles there are dark areas that indicate brain damage, and fluid has collected in those areas as well.

In this next photo from a different angle, you can see the enlarged ventricles and the dark areas of damage also.

Most of her damage is in the back part of her brain. They said the area that interprets vision is in this area, but PRAISE GOD, Myra CAN see! That is one thing they are still amazed about.

The neurologist basically said that she expects this damage to affect her speech, motor abilities and learning to some degree. She said she can't predict to what degree. She said Myra will continue to be at high risk for cerebal palsy, seizures, infantile spasms, and mental retardation.

We also talked about why her head was not growing. She said there is so much fluid and room for the healthy white matter to grow, that it's just not putting pressure on the skull. She said she doesn't know when it will, either. She also said in a previous appointment that if her head is small, it's just small. They don't do anything to make her head look normal. She said even if the skull fuses, that they wouldn't do anything because of the severe damage. Yet, my pediatrician said they can cosmetically make her head look normal even if the brain isn't growing, and that it would still be concerning if her skull fused at this point. I side with my pediatrician in that we would still like her to look normal and not add to the hardships she might have.

BUT, we are still expecting her brain to continue to grow and eventually put pressure on her skull. We know her brain/skull will always be smaller than average, but a 3-year-old with a head the size of a two-year-old isn't as concerning as a 3-year-old with a head the size of a newborn. So, we'll just have to see what comes. And keep praying about her brain growth.

I think I did well in taking in this information KNOWING this is not the full story or scenario, KNOWING that brains are very spectacular in how they heal and make new pathways after damage, and KNOWING that my God can do ANYTHING!

A week ago at a healing prayer service at church my head pastor prayed over Myra and he and Mr. Prince felt Myra's skull move. Later, after examining her head fully, I realized that a part of the overlapping suchers had smoothed out. I rub her head everyday, and that evening during service was trying to memorize the structures of her head so that I would KNOW that something had moved. It was VERY clear that a certain part has smoothed over. So, I believe that was God's reminder that He's not done dealing with this matter. And, that was not the first time my baby girl has been touched by God's very hands...

Like the Israelites in the desert, I need to remember all He has done for Myra so far. He made her heart beat after resuscitation. He didn't have to do that. He made each one of her organs begin to work perfectly after the doctors told us none of them were working properly. She is moving all of her limbs, she can see and she can hear. He made her suck/swallow/gag reflex come back after 3 weeks! He has healed her tremors and her seizures are controllable, if not healed. I've read about, and have met families with conditions much worse than hers. I even had a cousin who was completely immobile and died prematurely. We are blessed. We also have four perfectly healthy children. We are extremely blessed. And I give God all the Glory for that.

All that said, in my search to find a normal infant MRI scan tonight online, I came upon this story. I believe God orchestrated this search so that I would be encouraged.

This scan actually looks much worse than Myra's scan. The ventricles take up almost all the white matter. You would think this person was very disabled. Not so. Read his story here. This shows that no matter what this scan shows, we can still have hope, even from a medical standpoint!

But, I have put my hope in an Amazing God.

Will you hope and pray with me? I believe the prayers of many is what pulled Myra through her hardships in the hospital. And, I believe if we pull together and pray for Myra's brain like we did for her life, God will move greatly to show ALL those people what He is capable of. Please continue to pray for Myra. For her to stun all the doctors with her capabilities, for her brain to heal and create new pathways, for her head to grow. For Him to heal her completely.

Matthew 7:7-11 "Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened. "Which of you, if his son asks for bread, will give him a stone? Or if he asks for a fish, will give him a snake? If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!

Matthew 18:19-20 "Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them."

Matthew 21:22 "If you believe, you will receive whatever you ask for in prayer."

Mark 10:27 "Jesus looked at them and said, "With man this is impossible, but not with God; all things are possible with God."

Mark 11:24 "Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours."

Sid the Science Kid Amazes Us Again

2010-01-18T16:23:00.000-08:00

Zoobs are one of the neatest toys if you haven't ever heard of them. They are slightly difficult for a 3 year old to manipulate, but once they get the hang of it, there are no limits to the fun! They have a website where you can learn from kids around the world how to make creations they have created themselves, and you can upload your own images to share, too. Many of the creations come from Beijing, Canada, Guatemala, Philippines, Germany, Italy, and many other places. Sid enjoys finding these places on the map to figure out where these children live, find out what time it is where they are, and learn the bits and pieces Mommy can muster up to teach him in the moment about these areas. Here are the creations Sid has shared with the world of Zoobs:

Sid the Science Kid made a crown for the girls

Here Sid made a Computer, equip with the keyboard, mouse and even the antennae....LOL!

You are a smart, creative boy Sid and we are so proud of you!!

Winter Fun

2010-01-18T16:09:00.001-08:00

Thanks to thrift stores and Grandma,
I had gear for everyone to play in the first snow fall!!

Boo Boo took a face dive early on, but still wanted to be outside!

Sid tried to climb the ladder to no avail....

Snow Angels!

Boo Boo had a GREAT time on the slide!

Christmas and Myra's 3 Month Update

2009-12-27T17:15:00.000-08:00

Wow, it's been a while since I've updated! December was VERY busy, but January has finally slowed down a bit....

"Miracle" had her umbilical hernia repaired on December 18th and had an anal scope and dilation done along with an MRI. Her umbilical hernia might have closed on its own, but her intestines were falling through the hernia and would likely not allow self-closure to happen. So, we opted to do the surgery earlier rather than later because it would be easier the smaller she was, and we felt she was having some discomfort from it, too. The scope was just to check for problems because Miracle had blood in her stool a few times, and I'm still not sure why he did the dilation. The surgeon mentioned anal fissures, but she only has breastmilk stool.... I guess to avoid future problems....?? Anyway, the surgery apparently went well, though they had issues during her MRI and had to hand-bag her the entire time since she was sedated. I'm glad the anesthesiologist was anal like I am and was with her every moment through surgery and the MRI to keep an eye on her. We will get her MRI results on January 21st. Here are some photos from the stay in the hospital:

Waiting for Surgery in the sling:

Right after Surgery:

Belly button before Surgery:

Belly button after Surgery:

Christmas was pretty laid back this year. I didn't put up the tree until days before Christmas and didn't do any extra decorations. It was fun to have 7 stockings hanging this year! We did our Jesse Tree, but Mommy dropped the ball a few days....oops! We were given lots of gift money with Miracle's situation this year, so we had a good Christmas for the kids. Probably the last one for a while. They each got a big present, a few little presents and a stocking full of little tinker things. And for the first time in 6 years, Mr. Prince and I got to purchase gift for each other! They were fun, cheap gifts but it was nice to get a gift from each other. It's something we need to do more often. Here are some photos from Christmas:

This ended up being Boo Boo's favorite gift, a cowboy hat!

Grandma and PopPop got the kids 63 piece puzzle and they loved them!
Sid is in his new GI-Joe costume, too.
The Mickey Mouse Clubhouse is popular in our house...
mostly because we love to hear Boo Boo say, "Oh Tooooodles!"Princess Pea and Angelica Pickles have BEGGED for these PJs for MONTHS!Sid has gotten into GI-Joes recently

After multiple Christmas celebrations, PaPaw and Grammy and Cousin Kristan visited from Illinois! They even came bearing MORE gifts! My ornery children weren't very grateful as they opened clothes as their gift. The girls seems excited at first, but then Sid the Science Kid actually asked why they weren't getting toys. Boogers! So much for the unselfish Christmas I planned on... PaPaw then brought out the FUN gifts and they were a hit! Much better than Mommy and Daddy's gifts... =) It was nice to visit with my Dad and Step-Mom since we couldn't make the trip to IL this year. Our van just isn't big enough for a long-term trip with 5 kids! And Miracle HATES the car anyway....

PaPaw and Boo Boo

The same day my Dad headed out, I took the girls on a special trip to MI. Princess Pea's best friend, Kia, was having a Princess birthday party. Since we weren't making the trip to IL during Mr. Prince's vacation, I decided to visit Kia's family with just the three girls. They had a blast! Happy 5th Birthday Kia!

Princess Pea, Kia and Angelica Pickles

I helped with the cake. =)

Like I said, January has finally slowed down a bit and we are starting up some school finally, since Miracle's birth. Our first week it took me all week to get through each subject area at least twice, but that's better than nothing! I'm really going to focus on Math and Reading this semester, and our History and Science curricula will just be bonus features for now. I think the breaks we've taken, though necessary, have set Princess Pea's reading back and I'd really like her to move forward with that. She's ready to keep moving and doing great. Sid the Science Kid needs to focus on memorizing his addition facts better so we can move forward with carrying/borrowing and get ready for multiplication at the end of the year. The kids are BEGGING for school these days and our house really runs more smoothly with school structure in place. Looking forward to getting back to "normal"!

I have picked up a few little projects this month. Miracle was in need of a winter hat to fit her tiny head that didn't squeeze it, so I crocheted and knitted a few. I am also in the process of making some leg warmers for the girls' ballet class. Here are Miracle's hats:

I didn't ended up liking this one on Miracle, so Angelica Pickle's doll took it.....

On of my favorite photos of Miracle!

Miracle Myra will be 4 months on the 24th....whoa!! I can't believe it's been that long! She is about 9.5lbs now and finally moving out of her Newborn clothes into 0-3 months!!! I thought my last three were tiny.... She is actually doing Great! She sees her First Steps therapist once a week and Mommy does therapy with her multiple times a day. She is cooing and smiling more every day, she is improving on her head control each week, she is tracking better and is becoming interested in more things, her range of motion is excellent compared to what is was when she left the hospital and in the normal range now, and her therapist has been very happy with her progress. She seems to like therapy and massage, which is good. I have been very encouraged with her continued progress, despite the fact that her head doesn't seem to be growing right now. We are still waiting for God to move and take control of this situation. There have been so many verses I've read, stories I've heard and sermons I've listened to lately that have been encouraging. Remember and hold onto the promises God has given you. Don't give up on your child's development because God hasn't and won't. Don't listen to what the world is telling you because God's power is greater than this world's. Believe. Pray. I've taken it all in and feel very confident that God was specifically speaking through all these avenues straight to me to encourage me. He has done amazing miracles in Myra's life so far and I have no reason to think He's done moving. I love John Waller's song:

I'm waiting
I'm waiting on You, Lord
And I am hopeful
I'm waiting on You, Lord
Though it is painful
But patiently, I will wait

Happy Girl

Myra - 2.5 months old

2009-12-12T19:22:00.000-08:00

Myra has had such a rough start, poor little girl. What an amazing story we will have to tell her someday, though...

We actually ended up in the ER with Myra last weekend because she had her first seizure since 1 day old. They were weaning her off her seizure medication in hopes that her seizures were just due to her traumatic birth, hoping she didn't actually have a seizure disorder from brain damage. It's still to early to tell, but she will be on medication for at least a few years now, possibly for a lifetime. Unfortuantely, her debut as baby Jesus didn't happen, as we left for the hospital just minutes before she was to be on stage. Thankfully, we had planned a back-up baby for each performance in case one baby was fussy. Oh well.

Myra seems to slowly be getting back to her normal self. It took a number of days. But, she is back to tracking well, cooing some, smiling occasionally, and even grabbed onto my shirt a few times while nursing today.....all great accomplishments! We are working on tummy time, range of motion, and stretching out her neck (because she prefers the right side) with her physical therapist currently. She is still seeing a neurologist, pediatrician, physical therapist and chiropractor regularly. She has surgery for her umbilical hernia scheduled for December 17th. This week her intestines were falling through her hernia and seemed to be bothering her a lot. The surgeon said we could do the surgery any time, and we opted to do it sooner rather than later. Since she has to be under sedation for her MRI also, we are doing the MRI the same day. Unfortunately, it won't be until the end of January when we get those results. Her head has grown some more lately. It was 33cm at birth and is now 33.6cm. Something is better than nothing!! So far she seems to be developing normal, but there is still lots to wait and hope for. So, for now we take one day at a time and celebrate the little things. And each time I kiss my other four kids on their heads, I thank God for their big noggins that hold a perfect healthy brain. You sometimes don't know all the things you truly should be thankful for until it has been taken away...

Here are some photos of Myra now that she is 2.5 months.

Mommy has splurged on dresses now that I'm realizing this may be my last little girl!!!

Myra's Testimony

2009-11-26T09:47:00.000-08:00

One of my church pastors asked Paul and I to share Myra's testimony at our Thanksgiving service. Though nervous, I am honored at the opportunity to share what God has done for our little girl. This story is not in it's completion; I will some day write out every little miracle we've seen. But, it's a story to share with the world on what our God is capable of, willing to do and desires to do for all of His people.

For our 5th baby we had a home birth planned. We had a successful homebirth with #4 and were looking forward to the experience again. When I was 3 days overdue I had started some light contractions. My last two children were 10 and 15 days overdue, so I figured I still had another week. After slowing down from my day that evening, I felt uneasy that I hadn’t felt the baby move during the day. Within 30 minutes of calling my midwife concerned, my water broke and our baby had, had a bowel movement due to some form of stress. My water was thick and green. I called for childcare to come immediately and headed to the hospital as quickly as I could. I called a few friends and family members to be praying. On the way, I begged God to be able to hear my baby’s heartbeat. I told Him that I wasn’t ready to let this baby go, and I didn’t know if I would be able to delivery a baby knowing it had died. I didn’t care if they gave me a c-section, I just wanted to see my baby alive. I felt numb. The fact that my water had broke was a miracle. I was then alerted to the fact my baby was going to need significant help after birth that I would not have been able to provide at home.

When we arrived at the hospital they hooked me up to a monitor and I heard my baby’s heart beat. My midwife, Paul and I praised God in that little room.

I labored for 3 hours with a baby’s heart rate that wasn’t ideal. Suddenly, baby’s heart rate dropped during a contraction. It recovered that time, but the next contraction it didn’t recover. I was rolled away immediately for an emergency c-section with general anesthesia. Neither my husband nor myself watch our little girl being born. Which proved to actually be a blessing in disguise.

Myra was born not breathing with no heart rate and was put on full life support within minutes of birth. Some time between when her heart rate dropped and when she was born, 10-15min, she had suffered severe brain damage due to lack of oxygen.

She was hooked up to 2 large ventilators and had at least 7 IV meds going into both hands and her belly button.

At 4 hours and 24 hours she had uncontrollable seizures.

When people called and asked how she was doing, all we could say was that the doctors weren’t expecting her to live.

We visited her often in the first 48hrs. I felt strongly ever since I heard her heartbeat when we arrived at the hospital that she would live, and I believe God gave me a supernatural peace throughout this whole experience. But, that hope was sometimes hard to hold onto whenever we talked to the doctors.

On Day 2, the NICU doctor and pediatric neurologist sat us down and went through her body systems to explain her condition:
-she had no reflexes due to severe damage to the central nervous system
-her pupils were not responding
-she had no breathing efforts
-she was on blood pressure medication to regulate her heart rate
-her blood was having a difficult time getting oxygenated because of the pulmonary hypertension
-liver enzymes were leaking into her blood stream causing ongoing damage to her body
-her EEGs at 8hrs and 32hrs showed severe suppression of brain activity and deterioration from
the 1st one to the 2nd one
-her blood sugar and platelets were not stabilizing
-and her kidneys were not functioning at all and she was beginning to swell and retain water

The doctors told us that she was not likely to survive because there was nothing they could do to make her organs begin to function like normal. She was starting to swell and they said we should consider signing a Do Not Resuscitate paper or consider turning off her life support machines. They said she would probably swell up very large and then her heart would eventually give out. And because her EEGs showed little brain activity, if she did survive, she would likely be in a vegetative state for life.

It was that afternoon that Paul and I went back to my hospital room and sobbed, begging God to help our little girl. I believe God spoke to us through many songs and scriptures during this time. We listened to the song “Porcelain Heart” by Barlow Girl over and over. It says, “You pray, this can't be the way. You cry, you say something's gotta change and mend this porcelain heart of mine.” It was the hardest moments I have ever been through, and I still can’t listen to that song without crying. I told God we were helpless and needed His strength.

That day God showed me Isaiah 29:14, “Therefore, once more, I will astound these people with wonder upon wonder.” and gave me hope again. This verse has been proven over and over again these last 2 months.

And He shared Psalm 33:18-22 with Paul,
“But the eyes of the LORD are on those who fear him,
on those whose hope is in his unfailing love,
to deliver them from death
and keep them alive in famine.
We wait in hope for the LORD;
he is our help and our shield.
In him our hearts rejoice,
for we trust in his holy name.
May your unfailing love rest upon us, O LORD,
even as we put our hope in you.”

That evening we brought our four other children up to visit Myra. We weren’t sure they were going to have another chance to ever see her. Also, that evening Paul and his father put together a prayer time with our immediate family. Kevin brought his guitar and Paul and him stood over Myra praising God and proclaiming healing into Myra. At the same my mom, mother-in-law and a few others were praying in the lounge. At this point we understood that only a miracle would allow Myra to live. We were also able to pray for single mother who’s daughter had been in the NICU for almost a month with down’s syndrome and a plethora of other issues. He allowed us, in our suffering, to minister to someone else and it was Awesome.

It was the very next morning (Day 3) we went down to visit Myra, and the nurse told us she had began to urinate! Her kidneys seems to be functioning out of the blue. We got an email later that morning from a friend whose healing team has been praying for Myra. One of the members of the team said “God had her pray that the heavens would open up and that childlike in appearance angels were descending with all the organs that Myra needed from the warehouse of heaven. That the organs would be supernaturally transplanted into her and God himself would rub those organs and that she would produce urine that day.”

It was from that day forward that Myra began to get better, miracle after miracle. The doctors seemed to be amazed as each of her organs started functioning. There were many times they would report happy news and actually state they weren’t sure why or how that part of her began to work normally. We knew.

On day 3 she had her first voluntary movement
On day 6 Myra opened her eyes & yawned for the 1st time
On day 7 her blood pressure stabilized
On day 9 we were able to hold her for the first time
On day 12 she cried for the first time
On day 17 her lungs were completely healed

Those are just a handful of the many miracles we witnessed.

On day 16, Michelle King put together a world-wide prayer vigil for Myra through Facebook, of which hundreds of people attended from their homes. We prayed specifically for her suck, swallow and gag reflexes to start working, for her brain to be unaffected by this event and for her head to grow and the bones on her head to stop overlapping.

Four days later, one day before her surgery to place a g-tube in her stomach for feedings, she began to suck on a pacifier. In less than a week after surgery, the g-tube wasn’t being used at all for feedings and she was full-time breastfeeding in the hospital, a very special answered prayer.

After recovering from surgery, Myra came home on Day 30. She was given 22 diagnoses in those 30 days, almost all of which have resolved. But, the miracles haven’t stopped. Since she has been home:
-her tremors have gone away completely
-she is weaning off her seizure meds still with no seizures
-her gas issues related to her surgery have subsided
-her tone issues have improved on their own
-and she is tracking movements --- her eye doctor said her eyes seem to be normal after the CAT scan had showed the greatest damage to her brain was in the area responsible for vision - PRAISE GOD!

So, as of right now the only things we are still praying for are her brain to grow and move her skull bones so they aren’t overlapping, and for her brain to be unaffected by her birth trauma. Just yesterday her pediatrician said her head has grown .3cm!! Another miracle!! The doctors say she could still have severe handicaps and only time will tell. After all the miracles we have witnessed, it’s hard to even believe she isn’t going to be just fine. And we continue to pray and believe for God to completely heal Myra for His Glory.

Nicole Nordeman’s song “Gratitude” has really put much of this in perspective for me. Her lyrics say,
“Oh, the differences that often are between
What we want and what we really need
So grant us peace, Jesus, grant us peace
Move our hearts to hear a single beat
Between alibis and enemies tonight
Or maybe not, not today,
Peace might be another world away
And if that's the case . . .
We'll give thanks to You, With gratitude
For lessons learned in how to trust in You
We are blessed beyond what we could ever dream
In abundance or in need
And if You never grant us peace
But Jesus, would You please . . .”

For the remainder of Myra’s life we are going to trust God that He will use her miracle testimony to prove His love to us, to prove His power over this earth, and to strengthen the faith of anyone who hears her story. And no matter what her outcome, we are going to praise God and trust in His greater plan.

This verse has become dear to our hearts, as we feel as Paul did when he wrote to the Christians of Corinth. 2 Corinthians 1:8-11, “...We were under great pressure, far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many.”

Please continue to pray for Myra, and to praise God for His faithfulness in her name. We give Him all the Glory for her continued healing and are thankful for His many blessings this holiday.

Puzzle Mania

2009-11-23T17:50:00.001-08:00

The Klan was very proud of finishing this 3x2 puzzle with 300 pieces the other day. MommyK does NOT like puzzles.....but still helped put together the "easy" parts, as Mr. Prince would say. Mr. Prince and the Klan finished the rest before dinner. I was proud, but happy to have my dinning room table back, too!

BTW, sorry....Angelica Pickles is almost always naked.....

Family Photos

2009-11-20T15:49:00.001-08:00

Myra 6 weeks

The girls

The Boys

The Klan

Christmas Photo - Myra is screaming and I don't like the pose, but oh well!

The girls in their outfits - this pictures didn't turn out the best, but I love their dresses!

Myra Stylin' in her New Nappies

2009-11-20T15:41:00.000-08:00

We got Myra's BumGenius XS AIO cloth diapers in the mail this week! I had to force myself to not get all PINK because I know I will use them for other childREN. According to Mr. Prince, we are only having ONE more, but I have different plans....HA!

Isn't she so cute in them! We've used the BG one-size diapers since baby #2, but they are still huge on Myra. My other babies were 8lbs at birth and 11 or 12lbs by 1 month, so they moved into the one-size right away. Myra is still so dinky and the one-size hits her g-tube. So, anticipating buying another $100+ in diapers, we decided cloth would be better and an investment for the future. And PaPaw and Grammy were nice enough to purchase them for a "birthday" gift for Myra.