Partial Diagnosis and Some Things About Elliana

Last week Ellie and Isaiah had their sedated MRIs done. I don't know all the results yet, like Isaiah's cardiac issues and we are still having problems scheduling his surgery for which I hope to update soon just please pray for that to be scheduled soon on a day we can be satisfied about. But yesterday, I spoke with the neurologist about Ellie's brain MRI. I have suspected all along that Ellie had a brain issue going on that was causing her delays and more. I knew in my mother "heart" that it was more than just orphanage delays. It was confirmed that sometime in her very early life ( utero or during birth) she had a state of Hypoxic-Ischemic (Lack of Oygen) which did cause a brain injury, resulting in what seems to be Cerebral Palsy. 

The doctor still isn't sure what is causing her ataxic symptoms. It seems from the MRI, which would show a different part of the brain affected, is all normal. However, ataxia is undeniably there, so she will be having some more tests, metabolic  and maybe a genetic test. It could be something as simple as Ataxic CP, which is the rarest and most complicated form from what I read.

I feel glad that we have a diagnosis. I am hopeful that her brain looks as if the damage was done a long time ago and it is not progressing. I feel especially hopeful that Ellie is doing so well. She is a lot of work, but we see lots of progress and she is a joyful and adaptable little one. She is fitting well into our family and we are so blessed to have her a part of or lives. I am taking each new issue we have to deal with in stride. I give God all the glory. 

One of the issues that has been puzzling and stressful for all of us is that she has been a head banger (the back of her head on the wood high chair, wood floor, the tile wall around the fire place, etc.). She does it when she is mad to get attention. She doesn't seem to feel it. Sometimes she gets in a fit where she follows me around if I am busy and will drop herself to the ground and do this for me to pick her up. It is fine if I pick her up in a few minutes, but sometimes I still don't give her what she wants so then she starts hitting me or trying to head bang me.  It has to stop. I am so tempted to get her a helmet some days. My new plan is to stay on top of her when she does it and I have a port a crib in our dining room (I look as if I run a daycare as we have cribs all over the house these days.) Once she is in one of her fits I will tell her "no" and put her in the crib. I know she will not be happy about it, but I didn't want to put her in the room away from me so I am going to do it close by and just work on teaching her it is not okay to hit her head like that.

On a better note, her walker has been ordered. We did get her orthotics but she doesn't like them much as they are huge on her tiny feet, so it is very awkward for her to walk in them. She trips more right now unless being held just so. She is only using them a few times a day for 30 minutes at a time to build up her ability and tolerance for them.

Ellie is still so smart and cognitively right on target or ahead even, it seems. She must do everything the big kids do and she is very aware if you try to do something for her that maybe a baby would need help with, like hold her spoon when she wants to do it or hold her so she doesn't fall off the piano bench. She pushes you a way and insists, in Ellie fashion, that she can do it herself. So we are learning to accommodate for her physical needs and safety but not take away her dignity. Sometimes as a busy mom I find it hard to balance that, I am learning a lot.

We have amazing therapists working with her. Our Speech, Occupational and Physical therapists all seem to have a gentle, yet encouraging and understanding way with her. They are also each experts in their areas and related to kids with CP. I feel very blessed to have them. 

Some days I feel like all I do is drive the kids to therapy and do grocery shopping. My older kids help me so much and I don't know what I would do without them. I know some of the appointments will slow down once we get a complete diagnosis figured out for Ellie and have Isaiah's surgery all done. 
I counted how many appointments I have taken just children to in the last 3 1/2 months (since coming home from China) and I got 82! That does not include my appointments or Jay taking the kids to a few of them when he was home in the later afternoon. Those are all appointments with therapists or doctors that I have gone to. Right now our average is 8 a week. We have one day for OT (for 3 kids), one day for in home ST (for 3 kids) and one day for PT (for 2 kids). The other days are filled with misc appointments, which right now include a neuro-development psychologist for Elliana. I think in the end it will be a bit of a waste of our time as the evaluation doesn't seem to fit her age level or an adopted child. But we only have 2 more visits so I am finishing it up. It will be good at least to have a starting point to go back to if we need to as she gets older.

I love this sweet little girl. I feel so thankful that God chose me to be her Mommy. I do feel inadequate some days and wonder why He did choose me. However, I am blessed and don't want to argue with God. I know, without a doubt, that she will overcome her disabilities to a great degree. It might not be like a "normal" person but she is perfect the way God designed her to be. Amazing that I get to walk along side her and call her my daughter.