Pediatric Hematologist AT LAST is finally this week. We are finally going on Thursday less than 48 hours away.
I know we will not get any more results than what we know already but they will be doing some additional blood tests to try and figure out why Sean's protein levels are low and they said probably some additional testing that we have not done yet.
There are so many I just don't know where they will start. It could be several gene mutations and or it can mean nothing. Having this on my mind for that last couple of months has been very stressful.
Finding out all of this is such a short period of time is very stressful. We found out he suffered an in-utero stroke, closed lip schiz. (where his brain is not connected), told that he has right sided hemiplegia cerebral palsy, told that he has epilepsy and is having complex partial seizures, that he has low protein levels, and oh by the way he will always have to be on the seizure medication.
I know I hope and hope to get answers with each visit we go to but hearing from this doctor for some reason I will feel better. We will see how I feel AFTER we go.
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3 comments:
I really do feel your pain- I know how this feels, and it is hell. Waiting for blood test results can make you crazy. Waiting for answers, waiting waiting...
Keep up the good work- your son is beautiful=) In August we go for another round of follow ups with various specialists...it sucks
I am always on edge before doctors appointments. I just hate them and I hate the anxiety which is why I have vowed to not let it run my life. I just can't do it and still stay sane!
Thanks for asking about Miss Maddy. She is well and into everything! She does not sit still anymore! I should have some 18-month pictures of her this weekend if she is cooperative!
Good luck and I'll be thinking of you guys.
Thanks ladies. We should hopefully know the results within a few weeks.
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