So we met with the Geneticists yesterday. I was a WRECK! Two migraine pills and a trip to throw up in the bathroom at the Doctors office prior to the appointment and I was ready to go~
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What we do know: Zion definitely has and will have for the rest of his life a facial deformity. It will not get any better and there is nothing that can be done to treat it. It will probably become more pronounced as he grows.
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This deformity is where 1/2 of his face is smaller than the other sides "normal" counterpart. This deformity comes with (most likely) deafness in the one ear, dental/jaw issues on the smaller side...etc.
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We are not sure about his low tone and quite frankly the Doctor didn't seem that concerned about speaking, eating, and other such issues which usually accompanies children with low facial tone. That does concern me but it may just be that some children don't develop issues long term and maybe they wait to see which children have issues and then they start therapy at that point...but that is just my guess.
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He is not sure if this is a neurological issue or not because Zion is giving him "mixed" signals.
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The Doctor measured all parts of his body looking for a slight form of Cerable Palsy but he let us know that at this point Zion is too little to tell and he wants to see him back in three months to remeasure him. He also wanted to start him with Physical Therapy as he is still my little bump on the log while his sister is crawling all over and pulling herself up to the couch and chairs and such. I actually affectionately refer to Zion as my little door stop as that is just what he is at this point. He has started a cute new sound which mimics my kisses sound. So now when I kiss his cheek he returns my kisses with his kiss sound. It is darling!
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So to this point we are where we were and where we are going to be for the next three months. This could just be a facial deformity or it could be something else...they cannot tell us yet.
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I enjoy that they gave me something to do...the Physical Therapy should help to take my mind off the constant state of not knowing anything....at least I would be helping him to move forward and not just sitting still doing nothing and watching it get worst instead of better.
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Thank you all for the thoughts and the prayers! We are doing well and feel a great sense of peace and comfort within the depths of this situation. We are truly grateful for such supportive family and friends.
3 comments:
I'm glad things went fairly well at your dr's visit today. Hang in there! You're a good mama.
That sounds like a "typical" dr. appointment...you go away with more questions and the "wait and see" answers. I loved every one of Porter's therapists and I consider them my friends. I hope you have a great Early Intervention Program in your area. Maybe the therapists will be able to give you a better idea of what is going on with little Zion! FYI the grieving process is a real treat...sometimes I find myself grieving just seeing another child Porter’s age running around and doing all of the things he can’t. I’m seriously just a phone call away if you ever need to chat.
Oh, my dear Chris! I can't believe I have gone so long without checking your blog! You and little Zion are in our prayers! Keep us posted.
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