We've been waiting, anticipating, dreading today for at least five months. Maggie's Neurology appointment. I still remember the day I took her to the state's Early Intervention office for her initial evaluation and the concerned look on that lady's face when she recommended I ask for a Neurological referral and consult. I was shocked when I found out our appointment was not scheduled until August. I wanted to go then. Right that moment. But I also didn't. And that was God's gentle hand leading the situation for our good and His glory. I'll get back to that in a minute.
playing before the appointment
walking in
Maggie's appointment went VERY well. God is so good!! Dr. Mathisen was his name, he did an exam, asked some questions, looked at hospital, pediatrician and Hand In Hand notes and was ready to talk. Here we go. Is the expression on his face good or bad? I don't know...this is the first time we've met and I don't know what his face normally looks like. Then he said, "well, I don't see characteristics indicitaive of Cerebral Palsy" or something to that affect. {Insert proverbial exhale} What great news because if anything, we assumed this would be the diagnosis. CP is commonly understood as a disorder caused by lack of oxygen at birth, but Mathisen focused more on fluid to the brain in his explanation. He drew a picture of the brain and showed us the vessels that deliver fluid & oxygen to all areas. When there's something that causes a blockage (like a knot or two in the umbilical cord), fluid can't get through, it dries up and that part of the brain is damaged, which is what the MRI was likely to show. This is an assumption, he said, because he didn't have a picture in front of him, but we didn't feel Maggie's case is critical enough to sedate her for the procedure. He felt strongly the evaluation provided enough informtion that an MRI was not necessary. He also said very often people take an event, usually at birth, followed by a motor delay and just apply this broad defintion of CP to it when really CP has very specific characteristics and Maggie is not displaying them.
So what
is happening with Maggie? Does she
have brain damage? Yes. I realize that may be difficult to read but we already knew this because of her delays and difficulties. BUT this is not degenerative and with work and opportunity -as with most kids with a similar situation- Maggie will learn and one day we won't know the difference. There are so many pathways in the brain that if one is damaged, you teach the brain how to work around that and another part will compensate for the loss. This is particularly the case with children because those pathways have not been formed yet. The Neonatologist discussed this with us while Maggie was in NICU. Only God could create such a marvelous, intricate organ! So what
is the deal? He didn't give us a 'technical diagnosis' but said she has a developmental disorder as a result of brain trauma in utero-- what I described above. In fact, he said a diagnosis doesn't tell us anything- just a name- and we should look at Maggie and what she's doing. He would expect motor dificiencies because the brain did not develop properly in some areas so she struggles where other kids don't. We can even see Maggie concentrating on things almost as if "why is this not doing what I want it to" and her brain is either going to figure out a new way or just not do it. She strongly favors her left side and that's not normal for a child her age, so we discussed restraint therapy, which our therapists just spoke to me about last week. We'll have to help her train her brain to use her right side. So our goals are the same as they have been-- continue with PT/OT and focus on what she
can do, the progress she
has made and work to strengthen her weaknesses.
this child runs even in waiting rooms at the doctor
office! He was heading to the play area where I
never got pictures because we were called back
just as I finished paperwork!
Wait, did she say in utero? Yes. Dr. Mathisen said if her brain trauma were a result of her birth, she would've displayed other issues like seizures, being unresponsive and floppy, etc. and this is not the case with her. Everything he sees is indicative of a problem in utero and at some point Maggie got her cord twisted up and as I described above, her brain could not develop normally. Obviously this event was not too dramatic and did not happen too early in pregnancy because she would be a much different child than she is. This was a small enough and probably gradual event for me not to know- as long as she was moving and kicking (boy was she!)- I could not have known. This was a huge personal relief for me because I have at times been down on myself thinking I should have known or should have done things differently during labor/delivery and didn't do my job protecting my baby. I'm grateful God granted me this peace....isn't God so great? It's easy to just say that sometimes and I feel very blessed to see and feel it.
back in our exam room...I intended to get pics
when the doc came in, but go sidetracked listening
and talking. oh well!
So God's hand has been all over this (told you I'd get back to that) because he knows the plans he has for us. Who knows where we'd be with aiding Maggie's development if her birth hadn't been traumatic, if we weren't keeping a watchful eye on it. Maybe no different at all, but who knows? Only Him. And in the meantime, we have found a much deeper faith and understanding than we've ever known because we see his grace and mercy and honestly, we often rely on God the most when we're in the midst of a trial, at our lowest. And more importantly,
so many people have been involved in praying for Maggie and seeing God work in and through her- this also may not have happened without her traumatic birth- so God used her little baby life to touch so many others. And now I have the peace for which I've prayed. I continue to pray for complete healing and have faith He will provide. Let me express again my gratitude to all our prayer warriors out there...thank you and keep 'em coming, we still have work to do! :)
I told Daniel on the way home when we discussed how great our God is, "I don't know why He likes me so much, but I sure am glad!"
Last Monday morning Daniel boarded and early flight to Houston, a trip we did not look forward to, but we were VERY busy in his absence. My parents visited from Monday morning ‘til Wednesday morning, we swam with friends Wednesday afternoon then went straight to Maggie’s PT at Hand In Hand, had a play date Thursday early afternoon then visited friends Thursday night and welcomed daddy home Friday. Whew! I also had work to do but only completed a few reports here and there the first few days because of said busyness so I got most of it done later in the week and over the weekend. 
