Tuesday, January 26, 2010

Myra's 4 Month Update

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...

5 comments:

J-momma said...

Even though our kids have vastly different special needs, I know what you mean. When I go out alone or I'm working at an event and I see kids around my son's age holding their parents hands, standing in one place for a few minutes while their mom shops, etc. I get really jealous. and i picture if mateo were there, he'd be running up and down the aisle, rolling on the floor, having a fit if i try to hold his hand, i'd end up having to buckle him in the stroller and he would scream and call names and spit. different challenges than you but still different from other kids. sometimes i get really sad watching him with other kids cause he does stand out. not just because his mouth looks different and he has a big scar, but because of his delays too. but, eventually you'll stop comparing to other children. you'll learn to accept where they are in the moment. and just do the best we can with therapy, advocating, and what we know is right in our hearts. it's a hard road. any child with any kind of challenge is hard, emotionally, financially, physically, time-wise, stress-wise. it's just hard. but the rewarding part is that every little milestone, every little success feels so much bigger than with a typical child. i remember when mateo went down a playground slide by himself. he had motor delays when he was little for a long time (still does although minor) and a lot of fear. so it was a big deal the first time he did it, we practically had a party. now who would do that for a typical child? the small moments are bigger and brighter with a child with special needs. and they make your lives bigger and brighter too. anyway, just some thoughts and something to feel hopeful about.

Anonymous said...

Turnstone is awesome. You should see if you can schedule a tour there. I've referred clients there and everyone has been very pleased. I took one of my sons there for speech. I assumed your doc had already hooked you up with them so I never mentioned it. But I highly recommend it.
Janis Chrissikos

Anonymous said...

you can find out more about Turnstone at www.turnstone.org

We are also planning a disability expo www.turnstone.org/expo

And, we're on facebook too.

Please check us out!

The Real Life of a Red Head said...

Ashley,

Thank you so much for your comment. As I read through your post, I had no idea the struggles/blessings you guys are facing. I will be adding your family to my prayers. (Nice thing about bedrest- more time to pray!)

I loved that you wrote that God already knew about Myras' brain. He formed it that way. It's no accident. I need to try to keep this in mind with my own situation. God already knew this was going to happen. He already knows the outcome. I just need to trust Him.

Thanks for your words of encouragement. I am going to follow your blog if you don't mind! :o)

Jill

オテモヤン said...

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