Thursday, September 23, 2010

Miracle Myra is 1 year old!


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.

Tuesday, September 14, 2010

New Doctor: Pediatric Neuro-Surgeon

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.

Monday, September 6, 2010

Myra's Fall Wardrobe

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!

Sunday, September 5, 2010

ACTH Finally Done!

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!

Saturday, September 4, 2010

MFW Homeschool Week 13 Review

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 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!

Wednesday, September 1, 2010

Safety Village

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...

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!