The call friday left me in shock, I thought for sure they would tell me she was just a carrier. She's never been sick! WRONG they said Alexis' blood work looks to much like Hunter's and they are pretty sure she has it. To the point they made her an appointment with the geneticist, heart doctor and eye doctor next month so she can go at the same time as Hunter. That "pretty sure" is the only thing im holding on to until she gets more blood work drawn and they actually look at her DNA and give me a definite yes or no.
September 8th is the big day for her. We will be going down to University of MD to see the eye doctor and after that we will pit stop at sub-specialty to get her blood work done. Since they found both of Hunter's mutated genes it shouldnt take long (or so they say) to get the results back.
In the mean time Alexis started pre-school!! With the precautions of "likely" LCHAD, since we don't know (& I'm in denial) I havent put too much thought into the fact that im sending my special health needs child to preschool, all I did was talk to her teacher and school nurse about LCHAD and give them a LCHAD FAQ and her ER letter. On her health form she had to get filled out, the pediatrician said she might need a snack during the day and if she asks for one she should be given one. So I did send a box of those applesauce squeeze pouches and left them with the teacher as a just in case.
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