Friday we took Joe to see a genetic neurologist at Riley. He seemed very knowledgeable and understanding. But basically Joe doesn't match up to any syndrome or disorder just right. So he wants to run a few more blood tests to rule some things out (including Angelman's Syndrome and FragileX Syndrome), but he doesn't really think any of them will come back positive. He did suggest the possibility of Autism, but there's no test for that. So, we got a whole lot of nothin'. We keep finding out what Joe doesn't have... but we still have no idea what is actually causing him to have such severe developmental delays.
I found an online article that was helpful and encouraging to me. It included the quote:
"Acceptance is not submission; it is acknowledgment of the facts of a situation. Then deciding what you're going to do about it." Kathleen Casey Theisen
I've been struggling with that very concept. I've been wondering how long we're going to continue to do test after test that may or may not find anything... is it giving up if we just stop looking for answers? Is it really going to change anything if we find out what is the reason behind the problem? We're already taking steps to help Joe through therapy, etc. That probably wouldn't change if we had a name to put on his "condition" or whatever. I'm getting to the point where I am accepting that we're not going to find a cure for Joe. The best we can do is help him to maximize his growth and development despite his limitations.
On a more positive note: We were pretty excited this week when he sat unassisted in the bathtub for the first time. Here is a video of that!
6 comments:
Keep hangin' in there, Lawana! I have you (and Joe) written down on one of my prayer cards ... so I will try to look at it often and keep you all in prayer.
Love ya!
Psalm 73:26
Hello,
Thanks for the update.. you are not alone.. we are in the same boat, our son in now 2, he has had an MRI (normal) and a whole batch of genetic testing.. all normal.. so we have no clues still. We have found that he is allergic to dairy. Wow, that doesn't help anything eh?? :) I appreciate the quote you put up, so appropriate.. sometimes you have to "let go and let God" a fav. saying of mine.. on the plus side, he is now WALKING!!! It is so amazing to see him stand up from sitting, and then catch his balance and walk away.. how far he has come from the 11 month old who could barely sit up on his own.. :) he is our turtle boy, slow and steady wins the race!!
Wow, that's encouraging about the bathtub. I want you to know that I pray for you guys a lot about this. I can't imagine how hard it is...so I am sure I would be struggling with the whole acceptance thing too. What a tough thing...is knowing a name going to change anything? I don't know either. I will keep praying, Wani.
What an awesome accomplishment and you got it on camera. :D Way to go, Joe!!!!!
We've had to make decisions about whether to press forward for other diagnoses or not. I understand what you're saying and will pray for continued direction.
Blessings,
~Toni~
Praying for you all!! Hope you have a wonderful Thanksgiving!! :)
Thank you for the video. I'm crying tears of joy watching it. I can't imagine how you are being stretched right now. We will continue to pray. God is faithful!
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