Sunday, June 27, 2010

Miracle Myra is 9 months old

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.


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!


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!


Lindsey62383 said...

Ashley, I am so happy to hear that baby Myra is doing so well. I smiled as I read of her improvements. We will continue to pray for Myra and your family. Keep up the good work, you sound like you are an AMAZING mama!!! : )

Lindsey Eubanks Moomey

Rachel said...

oh, Ashley, i hear ya! some days i just break out in tears b/c i'm so afraid i'll never hear aiden speak but i cling to the dream God gave Tamara about him saying her name and having straight eyes and i just cling to it with all i have. then i look at xander and cry "not again, Lord" and i begin to wonder if i will ever have "normal" children. but i cling to the knowledge that God is bigger, stronger, and wiser. He loves to heal and He loves to glorify Himself. keep clinging to what you know is true...He is good, faithful, and glorious!

btw, i'm always up for hanging out with your kids so you can declutter or help you declutter and let the guys take the kids :o) love you, my friend!

Mo said...

Happy for Myra, happy to hear she is growing and doing so well. It will continue, even if slowly, it WILL continue.

On another note, I have learned that the better question to ask is 'what now' as opposed to 'what if'. The what if's can beat you down and nearly kill you but taking a situation and asking what you are supposed to do now will keep you moving forward.