Connor is going into CHOP for another MRI & spinal tap on Wednesday 6/11. At this point it is a same day type thing but to be safe we are packing just in case they end up admitting him. I know that the metabolic team wanted specific tests done with the MRI & the spinal so our dr is getting in touch with them so that they can make sure all of that is done at the same time. We have to leave here around 7am. He needs to be there by 9am with the procedure to start at 10:30 am. They are figuring that he will be there at least 4 hours from the time we get to the sedation unit till we get to leave but that was said before they realized that he was also having a spinal tap at the same time. So, who knows how long we will be there.
Our pediatrician is trying to get in touch with the ataxia dr because she wants to understand what he thinks is going on and why he is doing the surgery for the biopsies (still don't have a date for that one yet). We are getting the hearing test set up at someplace around here. Thank God there is one thing we can do without driving 2hrs to Philly. Tuesday the 10th Connor gets his helmet too. What a fun and exciting week this is gonna turn out to be!!
Please keep Connor in your prayers. Pray that the dr's will finally see something and figure out once and for all what is going on with him so we can start the right treatment instead of just watching him fall farther and farther behind.
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