As I mentioned in my last post, Miss Maia had a busy Monday with appointments. In the morning, she was seen by the Neurology NP in the Spina Bifida Clinic. This was the woman who actually "found" Maia's shunt malfunction (which had been present for a year, but no one told us) back in February. This was the first time we had seen her since then. She was very patient with us as we asked a lot of questions. One of the things I wanted to know was if an MRI or EEG would show us how Maia's brain has been affected by the infection and/or seizures. Short answer is that an MRI might show this, an EEG would not. And bottom line is that getting those answers would not change anything in how Maia's recovery or treatment is approached. So... is it worth the stress and anxiety it would like cause our sweet girl? Probably not. As someone who likes to have all the answers, this is a difficult situation for me. I am praying for God to give me acceptance and reassurance that it doesn't really matter.
In the afternoon, Maia saw our wonderful Dr. S who is the Physical Medicine and Rehab specialist in the Spina Bifida Clinic. She is pleased with how Maia is doing from a gross motor standpoint. She has no answers (nor does anyone) about why Maia lost her speech. Dr. S is "hopeful" that she will gain it back, but is also quite cautious in saying that Maia may not regain that ability. We are praying daily that God gives Maia her voice back. It is one of the things we miss most. With Maia's brain injury, it is also possible that she has developed some autonomic dysfunction in her ability to regulate body temperature. At times, she becomes quite flushed and other times, her hands and legs/feet are almost purple from cold. No specific intervention at this point, more just supportive things to keep her warm or cool.
Today, I took Maia to her therapy appointments. Miss Maia surprised the PT and me. She was cruising by herself down the hall, holding on to the railing when she saw something across the hall that was pretty motivating to her. Next thing we knew, Little Miss Thing WALKED ALL BY HERSELF without holding on to anything for about 10 feet! WOOHOO!!
And that's our excitement for the day.
I am sorry you didn't get the answers you wanted so badly. I really understand the need to know, but I also strongly support no tests for casual information or interest only. Tests that change treatment or are for necessary diagnosis are all we now allow.
ReplyDeleteKris also has autonomic disfunction and struggles with control of her body temp. She gets very warm or very cold while the rest of us are comfortable. We have found that sufficient hydration when she is uncomfortably warm becomes imperative as profuse sweating (even her face) often accompanies that.
Miss Maia is really a champ! Walking opens a new level of exploration and visual stimulation for her. Hooray! I hold out hope that the brain connections that she is making as she accomplishes ever more are also going on in the areas of her brain that control speech. Praying that in time she will speak again, and she will again be able to share her wants and needs.
My dearest Melanie and Mark,
ReplyDeleteThat last bit of news about Miss Maia just delighted me. You all continue to be in my prayers. I promise an email in the next week...
XOXO Jane
What a thrill that Maia walked a few feet on her own. The unknown is so hard but must be building continued trust in the Lord. I continue to pray for Maia to regain her ability to speak with you.
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