2 year Family Update

Alright, an update on the family is overdue.

You are probably are wondering why I could go TWO YEARS without posting and I've posted a few times in a week.  Well...that's what VACATION is for, right?  Actually, over the last three weeks I have been preparing for the new school year and I'm finally done...and still have 4 days left of vacation!  Pretty pathetic vacation time when you look at 365 days in a year, but I'll take what I can get.  ;)

For those of you who remember where we were 2 years ago, Miracle is still very time consuming with her needs.  She will be three in September!!   She started playing with toys this winter and her vision and arm control are getting better, so she's actually been learning to entertain herself for periods of time.  We also got a wheelchair in December and she is enjoying sitting in that more often than our laps these days.  She still prefers the floor, though.  And our laps after dinner closer to bedtime.  And still takes all her naps in my arms.  We are working on this... ;)

She has just recently learned to roll on her own through an intense physical therapy program in Pontiac, MI called Euro-PEDS.  I was very impressed with the program when she came home rolling and taking her first steps with a gait trainer! She receives physical, occupational and speech therapy all twice a week and it's 30 minutes from our home.  That kills our homeschool day.  We are trying to do dual therapy and cut down on how many times I have to leave the house in a week.

 Miracle at Euro-PEDS in Pontiac, MI doing intense physical therapy

Sadly, she stopped nursing at 2.  I wanted to nurse until she was taking a bottle again, but after seizures (I assume) her ability to latch on and stay on to nurse was getting worse daily.  We also were teaching her to bite on food and she loved to practice her new-found skill while nursing!  And she didn't just bite, she never let go!  Between biting and taking close to 50x to latch on each feeding, I had to give up.  It was too stressful for both of us.  Unfortunately, she is now full-time g-tube fed.  We will get back to oral feeding some day.  I just don't have an hour multiple times a day to devote to working on oral skills and practicing eating, which is what it will take to get her eating again.  I have lots of stretching, massage and therapy to do with her daily and it hasn't been getting done on school days either.  I feel like a Special Needs Mom Failure most days.  I still will never understand completely why God gave me Miracle after giving me four other children and I still have a desire to have more!

Yes, undeniable insane. That's me.

She got hearing aids at 18 months, though I had been concerned since she was an infant about her hearing.  At least she has them now.  She cries when you forget to put them on after naps or wait too long in the morning to put them on. Apparently the first 18 months she had a hard time hearing my voice (heartbreaking for me) and could only hear when her siblings screamed, cried or yelled.  THAT is why she always smiled when they cried.  We always thought that was funny, but really it was cause it was the only time she could hear them well.  Eh, I think she still smiles when they cry... But, by the amazing power of technology, Miracle can hear just as well as I can now (it just sounds like everyone is talking through a tunnel).

Wish we could fix everything that way.

She also uses hand splints to keep her thumb out and in a useful position, ankle-foot orthodics to keep her right foot from getting contractures in her ankle from constant pointing of her toes and high tone, a stander to work lower body muscles and practice head control and she will hopefully be getting a gait trainer soon, too.  She took 16 steps in a row on her own with a gait training at Euro-PEDS this month!  Never been so excited for the first steps of any of my children...  She also takes Zantac and two anti-seizure medications daily.  She has been having seizures more regularly since February of this year.  We went 1.5 years without them.  Very disappointing.  And now she is regularly getting boils on her bottom - I assume from being in the same positions all the time.  Sigh.

Miracle with her new therapy kitten, Oreo

Homeschool has been rough the past few years.  Still enjoying it, just finding it difficult to get it all done.  The year Miracle was born (2009-2010) we started Adventures in My Father's World and Sonlight K science and it took us a year and a half to get through it.  Their math, phonics and grammar was all done in a reasonable 9/10 months.  Then in 2011-2012 I created my own curriculum studying cultures and geography around the world and I didn't get as much done as I wanted and we schooled through June.  Though when I gave them their final quiz and saw all that they had learned, I felt much better.  Again, their math, grammar and self-studies were done in May, just my teaching didn't get done on time.

Needless to say, Miracle takes up a lot of my time and I love her to death.  But, I realized this year bouncing between my 5 children, that I truly needed help.  More than I wanted to ask for.  So I began a search for some kind of respite care and found out that she qualifies for nursing care via her g-tube and I can probably get whatever I request!

Score!

So, I found an agency and we've been working all summer getting things in place for help as soon as school starts in the fall.  I originally requested 2 hours a day.  Then I planned my homeschool and decided I needed 10 hours each day.  ;)  Right now they will be coming in 4 hours a day and I may request a few more hours on certain days once we get started.  We had looked at Preschools in May because I was desperate to get a few hours of school in without interruption.  I just do not want her away from me AT ALL.  I wanted to cry thinking about all the stress I would have wondering how they were caring for her and what she was doing knowing she couldn't tell me herself.  So glad we found another route.  I think I would have taken a year off of school illegally before taking her to Preschool.

An update on 2 years of my life and it's kind of depressing.

It has been rough and stressful, but I'm still loving being home and my kids are too.  They are doing excellent in their studies and I'm very proud of them.  We have enjoyed the school we have crammed in between sports, swim and piano lessons, therapy sessions and life.

 Chess Tournament 2012

Sid the Science Kid 2nd Place

Princess Pea 3rd  Place and she got the Sportsmanship Trophy!

Sid the Science Kid is 9 and currently into baseball after his first year of Wildcat.  He is above average in all his school studies and makes my teaching more difficult in some ways as I try to challenge him but still keep him young.  He is talented in piano and is taking off in his lessons.  He's just one of those kids we all hated in school that was good at almost everything he does.  He is pretty obedient, but a negotiator in all situations.  That's where the brains get him in trouble.  And he has some issues with getting into others personal space and keeping his hands to himself.  But, all around he a great kid.  And he still loves me.  At least for a few more years...

Sid and his Lego creation at the Children's Museum in Indy

Princess Pea is 7 and exactly that, our princess.  She is very obedient and helpful.  She has a little of her mama in her and has the most trouble with compassion and saying sorry to her siblings.  She loves reading and most school.  She is currently into American Girl dolls and has saved up enough money to buy her own this month!  She is also showing some talent in piano and moving through her lessons steadily.  After having a little brainiac to follow, she is following very close behind her brother's footsteps.  I expect a lot of her, almost like another first born, but she takes the pressure well.  She loves Miracle to death and is always holding her and helping me.  And, of all of my children, I see an undeniable love for God in her.  She was baptized last fall and she just loves her devotion time and sees God in everything.  Her Christmas list was split into things she wanted and things she 'needs' last year - Jesus, God and a clean heart.  Melts my heart.

 Princess Pea swinging with Miracle at the park

Angelica Pickles is cute as a button, but rotten to the core!   Oh, she can be oh so sweet....when she wants candy or gum or a special trip or icecream or to play a game or a snack or a friend over or or or or... She is a child who is never satisfied or content.  And when she wants something, she lets the whole neighborhood know.  But, she loves Miracle to death and pretends to do therapy with her all the time.  That is when I see her the softest.  Her and BooBoo have gotten closer over the years and they have that love-hate brother-sister relationship.  Her and Sid have a hate-hate relationship most of the time.  Her and Princess Pea can get along, but more often they are competing with each other.  I wish I knew more ways of softening her, but for now we just survive her fits and move on.  Kindergarten was interesting this year.  She is super bright but not very motivated.  She gets frustrated more easily.  This year will be a challenge, I'm sure.

 Angelica Pickles lost her first tooth this month

BooBoo is still my spoiled little boy.  He is still so sweet for the most part, but with the influence of his older brother and Star Wars, this sweet little boy can quickly turn into a light saber swinging, baseball playing monster some days.  He is also a media junkie.  I don't like the tv and we often go weeks without turning it on for the kids at all.  But, he loves the iPad and iPhone and Angry Birds.  I used to give him my phone a lot to read books while I schooled, or at appointments or whatever.  But, once he discovered Angry Birds, The Tortoise and the Hare just wasn't as appealing anymore.  Disappointing, I know.  Once school starts I will have a strict rule that he has to read or do an educational game half of his iPad time, but for now I just try to avoid him getting a hold of it!  Hoping he will enjoy Starfall. com this school year, or other educational sites for his age.  I have lots of hours to keep him entertained.

BooBoo being the goofball he usually is

BooBoo with cape held together with a pantyliner, complements of my friend Michelle 

(great babysitter, huh?)

Mr. Prince is teaching 3rd grade for the first time this year.  I like teaching the same grade he is and comparing my curricula to his.  ;)  Mine are always better and more advanced.  Hehe.  He was able to play basketball, soccer and baseball this past year.  We decided that we needed out of the house more last year, so we each got involved in a lot. Probably too much, so we are cutting it down for this year.  But, it's good for the both of us.

And then there is me.  School dominates most of my daily and even nightly schedule, but last year I did dance in the same Christian dance troupe as my girls and did Bible Study Fellowship.  BSF was a lot and I couldn't keep up in the spring once all our outside activities had their end of the year bashes.  I loved dancing again after over 17 years of being away from it.  I got my flexibility back, lost 20lbs and just enjoyed myself.  Unfortunately, we can't afford for me to dance again this year.  But, it looks like my church is putting together a performance based dance group for Sunday worship services that I'm going to look into.  That would probably better suit my schedule anyway.  BSF is actually studying Genesis this year too, just like we are in homeschool, but I'm not sure I want to make that commitment again.  We shall see.  For now, I look forward to the few GNOs I get and chatting on the phone when I have a moment.

Me, Angelica Pickles and Princess Pea at the Restored to Glory dance presentation 2012

There is your update!  Probably no one ever needs to know THAT much about my family, but it's a good summary for our family scrapbooks.  Hope to someday browse the blogs I used to frequent and see what everyone else is up to two year later, also!

It's been almost TWO YEARS since my last post...

THAT will tell you how stinking busy I have been!  ;)

I'll have to update the family later, because right now I'm posting to join in the Not-Back-to-School-Blog-Hop 2012!

It's the first week and I'm here to share curriculum choices.  After slaving over these things for week, months and even years (yes, that would be my history choice), it's nice to be able to share and possibly help another homeschool mom at the same time!

Wow, I miss blogging...

Well, it's a BIG year coming up for our family.  Lots on everyone's plate, which means even more on Mama's platter!  This year Sid the Science Kid (9) is doing 5th/6th grade work, Princess Pea (7) is doing 3rd grade work, Angelica Pickles (6) is doing 1st grade work, BooBoo (4) is doing Kindergarten work and Miracle (2) is doing her own kind of work with physical, occupational and speech therapy!

I have actually been looking forward to this year for a long time.  This is the year we start Tapestry of Grace Year 1!  I have been drooling over this curriculum for over three years now.  No joke.  I had some stuff I wanted to do with the kids before I jumped in, but it's been on my calendar for 2012 since before 2009.  We did some early American History with Adventures in My Father's World in 2009-2010 and then I put together my own curriculum for studying the continents, countries, world religions, major ecosystems, famous landmarks, and famous people for 2011-2012 school year.  We loved both those years of history/geography and can't wait to start Tapestry next week!

But, that is not all we have on the calendar this year...

For science we are using God's Design for Life by Answers in Genesis covering Plants, Animals and the Human Body.  We have used Sonlight science in the past, and I'm more of a living books kind of teacher, so I'm adding to this curriculum to make it what I want it.  It's great information and I love the Creation-based information throughout it that I can't find elsewhere, but I miss the books! So, I have picked up a picture book and/or video for almost every chapter of Plants for this fall and I think I have exactly what I want for my kiddos!  Plus, BooBoo and Angelica Pickles can do science with us and it won't be completely over their heads!

For Bible we are doing a number of things- and I'm loving how they all complement each other!  Sid will continue with the Studying God's Word series with book E studying Genesis through Ruth this year.  This goes right along with our study in Tapestry of Creation through the fall of Rome and Church History.  As a family we will start out the year studying the 10 commandments in detail with a curriculum based off THESE videos.  Our Character Training studies are usually based off of great books like In Grandma's Attic, Storytime with the Millers and A Hive of Busy Bees, but for the first part of the year we will be reading through Susan and Richie Hunt's Discovering Jesus in Genesis.  Are you starting to see a theme here?  I promise, it wasn't all of my doing.  Even the girls' dance program with the Christian dance troupe Restored to Glory is portraying the story of the Israelites traveling to the Promised Land!  So, I'm just running with it.  When we are done studying the 10 Commandments we will be using Answers in Genesis Bible Curriculum for Kids for the rest of the year.  I'll have books and books for Character Building, but I'll decide on those later based on what exactly my children need  to be drilled into their minds encouragement in at that time.  Each child has their own age-appropriate devotional they do daily, we do daily family worship in the mornings (or sometimes just in the car when we are on the go) and we use THIS Charlotte Mason system for verse memorization.

Those are the curriculums we do together as a family.

Sid the Science Kid (9) is always one step ahead of me.  I teach him something and he often adds to my teaching, already knowing more than what I've taught.  He reads SO MUCH, though it's slowed down a bit this summer with his interest in Baseball.  But, the boy usually devours nonfiction, biographies and realistic fiction.  He is working his way through The Chronicles of Narnia currently, reading each one more than once.  If only I had that much time to read...sigh.  So, he's a bit of a challenge curriculum-wise.  I need to cover the material he doesn't know without boring him, repeating too much and giving him some challenges along the way.  He took the Stafford this spring and his average grade equivalency was 8th grade 9th month, getting post high school GE on a few subjects like math and reading.  Yeah, a challenge.  So, here is his line up this year:

Bible - Studying God's Word E (finish Queen Homeschool study Honorable Boy, also)
Math - Horizons 5 (scope and sequence more like a 6th grade math text)
Language Arts - Character Quality Language Arts (CQLA) Red Level A includes copywork, writing, dictation, grammar and editing but we skip the spelling
Spelling - All About Spelling Level 3 & 4, I'm keeping Sid and Princess Pea together and we are halfway through Level 3 and LOVE this program!  Sid hardly ever spells anything wrong, so this is just foundational teaching as far as I see it.
Reading - Reasoning and Reading 1 - reading skills and word relationship in the context of reading
Drawn into the Heart of Reading - character, plot, setting, climax study with living books
Vocabulary - Wordly Wise 5 and Vocabulary from Classical Roots 4 & 5, I just found this program and can't wait to teach him Latin and Greek roots without taking a college course in it myself!
Poetry - Institutes for Excellence in Writing Poetry Memorization unit
Extras - piano lessons, soccer, swim lessons, co-op and church choir
I am also reading the Cooper Kids Adventures Series by Frank Peretti to him.  I think these are a little dark, so I wanted to be there to explain some things as he read them.

Princess Pea (7) is following very closely in her brother's path.  She doesn't devour nonfiction books like him, but she does read a lot and she's probably around 4th grade reading level.  She loves learning and is an easy one to persuade to do one more chapter or one more lesson.  She is ahead of her peers but doesn't mind being challenged, so I take the liberty of doing so.  Here is her line up this year:

Bible - Finish Leading Little Ones to God, Personal devotions with I Am Loved by Sheila Walsh, SOAP method or Veggie Tales Obedience devotional
Math - Horizons 3
Language Arts - CQLA Red Level A, I could have put her in PreA but it seemed easier to have her doing the same lessons as her brother and just adjusting the lessons for her level if I need to
Language Lessons for the Elementary Child 2- I'm using this for reviewing grammar from last year and learning to write poetry. It includes narration and pictures narration that CQLA doesn't have.  She will also being doing extra copywork to improve some sloppy handwriting she's developed.
Spelling - All About Spelling Level 3 & 4
Reading - Beginning Reasoning and Reading & Drawn into the Heart of Reading
Vocabulary - Wordly Wise 2 & 3, we are finishing up 2 and moving on to 3 in the fall
Poetry - Institutes for Excellence in Writing Poetry Memorization unit
Extras - piano lessons, dance with Restored to Glory, co-op, swim lessons and church choir
I will be reading Laura Ingalls and probably some American Girl Doll series books to her this year. We will start with McKenna since she just purchased the doll in Chicago all by herself after saving since last October!

Angelica Pickles is, well....Angelica Pickles!  Don't you remember her from Rugrats?  Antagonistic, bratty, I'm-an-angel-when-I-want-something attitude?  Sigh....this is my 6 year old little girl.  I love her to death, but she will be the death of ME someday.  She is definitely my challenge, both in parenting and schooling.  So, we will be taking school slowly so as to enjoy learning and avoid as many battles as possible, while still moving forward and accomplishing my goals for her.  Here is her loose line up:

Bible - Finish Leading Little Ones to God
Math - Horizons 1, she is excellent in math but doesn't like the repetition so I'll be adjusting the lessons to be less work while still knowing that she's learned the information
Language Arts - First Language Lessons, we love this 1st/2nd grade book and it's gentle and oral
Language Smarts B- we LOVE this large, colorful book and it complements FLL well, filling in where it misses some stuff and we will probably do this into 2nd grade also
Spelling - All About Spelling Level 1 & 2, we are halfway through Level 1 currently
Reading - while waiting for All About Reading Level 2 to come out in September we will continue with Language Lessons for Little Ones 3 for reading instruction, thought it isn't my favorite book
Phonics - Explode the Code 3 & 4, all my kids love this series and I use it for review of concepts
Handwriting - Copywork daily
Poetry - Institutes for Excellence in Writing Poetry Memorization unit
Extras - dance with Restored to Glory, co-op, swim lessons and church choir

BooBoo is 4 but he's already started his Horizons K book and is reading some words.  So we will be working slowly through Horizons K and All About Reading Level 1 this year.  Then we will be reading books from the Sonlight book lists and maybe some Five in a Row books together. I have blocked a full HOUR every morning to spend with him and I'm very excited for our time together!

I think that's it!  Our checklists, binders, lesson plans and workbooks are all ready to go for Monday, August 6th!  We won't do every subject the first week, but by week two we will be full blown into the 2012-2013 school year.  We are doing a new schedule this year, taking a break or catch-up week every 5-7 weeks throughout the year.  That way I don't feel like I'm 'behind' all year long!  This gives me 6 full weeks to get behind and never really be behind.  Then, I also have June to fall back on if needed.  Hoping it works out!

Looking forward to reading more posts at www.ihomeschoolnetwork.com!

Birthday Party Fun

Well, since Myra's birthday we have had a super busy schedule. Besides the weekly homeschool, ballet, piano, soccer practice, soccer game, Wednesday night church and kids choir, physical and occupational therapy...I was trying to plan a birthday party for all three girls and get Sid the Science Kid ready for his first Junior Bible Quiz (JBQ) meet of the year.

Doesn't sound like much, but it is.

The girls' party got canceled the weekend of the 25th because I was advised to take Myra to the ER since it looked like she was starting her spasms again. Very long story short - the ER did nothing and it was a waist of my time and Myra's 1st birthday! Though, me and my friend Mandy had fun together! And, she seemed to be happy there most of the time...

She loves her new book that folds out!

Sleeping on Mandy's shoulder as we leave.

Because I wasn't home to finish last-minute preparation for the party, we canceled it that Saturday and rescheduled it for the weekend of Oct 2nd. That happened to be the same day at the first JBQ meet for Sid the Science Kid and that was a little crazy.

In the morning we went to the meet and watched two of Sid's matches, drove around to three different stores to pick up balloons (because a store closed that I usually use!), and picked up our fabulous babysitter so she could be with the girls at the party.

Side-story: While I was on my way home from getting balloons (ones I had to get while leaving all 5 kids in the car because the store was decked out in Halloween decorations) there was a man walking up and down the median of a huge intersection in the middle of the city wearing a horrific mask advertising a Halloween store! I was livid! I avoid taking my kids places the entire month of October, and now much of September, to sheild them from the horrors of Halloween. We turn off our lights and do not participate in the festivities per our own beliefs and convictions, and also to not scare my young children. Why must a store advertise with a scary mask? Why not Superman or a clown? Isn't Halloween supposed to be for children? Why can I not drive through my own city without being forced to see such garbage? Thankfully this man was walking toward my car from behind and my children did not see him walking. I was almost shaking with anger when I opened my door and asked the man to turn around and walk the other way because I have young children in the car, and that I would be contacting his manager for the grotesque way in which they were advertising. Grr, it still irks me to talk about it...

ANYway.... the party began and it was so fun! It was a Fairy Theme for all three girls...Princess Pea will be 6 at the end of October, Angelica Pickles turned 4 in May (her party was originally canceled because Myra started a steroid/immune-suppression treatment for Infantile Spasms) and Myra just turned 1 on September 24th. I had fun making tutus and head pieces for the party, but it was time consuming. And thankfully I have great friends, and even their husbands, that helped!

Myra (12 months) and cousin Avery's (3 months) tutus

That's 15 tutus from over 80 yards of tulle

Angelica Pickles fairy set she chose

Princess Pea's fairy costume

Each girl had a tutu, leafy head piece, wings and a wand to take home

I went for simple with the cake - chocolate and vanilla...

....and cupcakes!

Angelica Pickles and Princess Pea awaiting the arrival of their friends...

Friend Savannah coloring Tinker Bell pictures with Angelica Pickles

Backside of Jayden and Elle - too cute!

Miracle Myra is 1 year old!

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

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

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!

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!