Mystery Diagnosis

I am so sorry that I am so late in posting this update. I have good reason!! We had our house packed on Thursday (including my MAC) so we were left with DH's laptop and a resort (Hilton Hawaiian Village) with overpriced Internet access. We were also exhausted and had no time to be online. I have missed blogging and missed my internet and blog buddies. I will say it brought a smile to my face, joy to my heart and a tear in my eye to know that people were thinking and wondering about me and my Mia. Thank you for making me feel so special! I have thought about you girls everyday and I knew that you would all be waiting for the results of the MRI.

I was so prepared (or I thought) to hear the words "Mia has Cerebral Palsy" and hours before the appointment I kept repeating it to myself in my head to gauge my reaction. Could I hear these words and not cry? Have I already accepted it and now I am just getting the official confirmation? What would hearing this diagnosis do to me? For the longest time I felt that I was not in denial about Mia being at risk for CP. I felt like through all of my research that she just didn't seem to fit the characteristics of any form or mixed form of CP. Yes, she is globally delayed and hypotonic, yes she had a brain injury which puts her in the risk category for CP. One PT said she didn't think Mia had CP either. The other PT basically told me Mia is Mia and will do what Mia is going to do with or without the diagnosis or label of CP. At that point I realized I was in denial. I didn't want to believe that Mia would have CP.

From the first MRI at 9 days old I have prayed almost every single day for Mia to have healing and for a miracle for my little angel. I made it my mission to make my Mia be the girl that "surprises all of the doctors." I of course also gave thanks to God for allowing Mia to have the opportunity to live life and praise of thanks for allowing me the opportunity to be Mia's mom. Over the past 19.5 months I have seen God working on Mia through her progress. I knew He was hearing my prayers and answering them.

DH and I show up for the *results* appointment and the girl said she doesn't see the appointment. I did get nervous, we were leaving the island in a few days and if we didn't meet with the neuro I would not be a happy camper. This was the big reason we went ahead with the MRI we were told we could get the results before we left. It got straightened out thanks to the ped. running upstairs to give me some paperwork and she went in and spoke to the neuro and told him we were there. He had another dr. working with him that came in and 'evaluated' Mia based on her actions and our answers. He was very nice and Mia liked him. Dr. Pedersen the neuro then comes in and his first question is: "Has Mia lost any skills?" She hasn't, but my first thought is negative of course and I think that the brain must be more damaged that the first MRI showed. He then said based on Mia's traumatic birth and having to be resuscitated and the history of her birth and her first month of life you would want to diagnose her with CP. But he said based on the MRI and what she is doing he doesn't think it's CP. He said her brain has 1 super small area of injury that is very deep in the brain and he would not have even noticed it if the radiologist didn't point it out. He said her brain is near perfect, it is the right size, it has matured the way it is supposed to, she didn't suffer any nerve damage and no area of the brain stopped growing or died. He said her MRI isn't consistent with her traumatic birth. He said based on her brain you wouldn't realize how traumatic of a birth and first month of life she had.

While she isn't out of the CP woods yet it is now thought that her traumatic birth may be overshadowing another problem causing her delays. I guess I really wasn't in denial about Mia having CP. The Neuro said she still may have CP that will be more obvious in the future (where she would have troubling reaching for things because her arm would bend and go into different directions rather than straight for the object) though he doesn't think that will really present itself. He said based on her current movements and abilities he doesn't see this happening. Then she busted out her new move, the bear crawl (walking on all fours) and this just sent him over the top. He was amazed at her strength and the difficulty of that kind of movement. He believes she will walk. This was by far the best appointment we have ever had with our Mia. The brain looking like it did isn't a mystery to me at all. It is my miracle that I prayed for! God is healing Mia! She is still significantly delayed in all areas but improving. She can't walk, she doesn't speak, she is determined though and works hard everyday!

What does all of this mean?Well, the neuro thought maybe she has a problem with her metabolism, kidney and or liver functions as well he wanted to check her lactic (sp?) acid levels and do genetic testing. The genetic testing results won't be in for a couple of weeks, but all of the other labs we had taken on Monday came back normal. Praise God! I actually don't think they think she has anything genetically wrong with her, but this is a mystery and someone needs to solve the puzzle so this is more ruling things out. I pray that genetically she is fine as well especially because I would like to have more kids (I wanted to try for #2 starting in October when DH returned home), but also because I want Mia to be able to have babies when she is older and not have to worry about things. I did ask the neuro what it would mean if any of the tests came back showing she has something they tested for. I was asking more in the aspect of therapy and the current path we are on, it would change or wouldn't it? He laughed and said "Well, then we would have our answer! And if they all come back negative then her traumatic birth was just one of those unexplainable things and she should catch up some time." He also said if it was the lactic acid causing the low muscle tone that she would take a vitamin for it.

Her dx is a medical mystery at this point. God has been good to her. Maybe she didn't come into this world the way I hoped or dreamed and maybe she won't ever catch up but she is still a miracle. There is power in Prayer. I do hope my blogging friends and CP board friends will still accept me. I have found such strength in them. I will be honest when I see some of the babies younger than Mia doing more than her I feel so happy for them but at the same time I am jealous. I know through Mia's determination, therapy and prayer Mill achieve great things!