Friday oct 24,2014 Day 5 at NIH So today started off with arriving at hospital at 730 and ordering breakfast for girls. Just to inform you all Jordan and jessie are not used to being up and dressed and out this early in morning !! So being here on time is a feat in and of itself. Jordans blood sugar was low again but not as bad as yesterday. Also found out that Jessies carnetine is low based on labs so today we start oral carnetine three Times a day in both girls . This is an amino acid produced by body which helps with proteins but apparently our girls do not produce as they should . The addition of this supplement should help their body produce energy and help with brain function . Before we were able to eat breakfast we were transported down to clinical photography for photos head to toe of both girls . Photos of hands and feet and face and head and back and full body !! Of course I asked photographer to get pic of all of us!! And of course tony made fun of me ( if u know me u know I always have my camera and am always taking pics which drives my family crazy) . Girls did ok for this but not their favorite activity. Then we went back to room and started eating and neuropsych arrived . Was scheduled to see jessie at 9 and Jordan at 1. Jessie was asleep so they went ahead and started with Jordan. This was difficult appt - they asked lots and lots of questions especially about development and what happened over past 18 yrs with development . Then they watched Jordan move around and tried to see what she would do with a small block and if she would track something . I hate those development test!! It always makes you see the things your kids cant do and I try to focus on the things they can do . But I understand you have to have baselines . Well by now jessie is waking up so they decide to stay and see her also. So there goes y breakfast again. I guess I will eat later. 3 hours later we were done with them and totally exhausted . So we did rest a little and I think we had a late lunch !! Next tony took Jordan to X-ray for full body X-rays and I mean full body. I think it is every bone !! He said it was very difficult because of course they want pt to be still and my girls will not just be still so tony had to hold her down which makes her squirm even more. Meanwhile little jessie and I go up to 7 the floor for EEG. ( I have story about stairs and elevators for later ) . So these 2 young techs want me to hold jessie still while they put 1000 electrodes with glue on her head . Really people have u ever met jessie ??!! So I was sweating for this one . Then they wanted her to go to sleep while they watched her brain waves and looked for seizure activity. Well jessie does to go to sleep on command and I forgot a bottle. Luckily Jordan and tony came to my rescue with bottle . Jessie fell asleep for prob last 5 minutes of the exam. Then we went back to room and met with team again and went over to childrens inn for about an hour before heading back to hospital for Jessies sleep study . Well of course they wanted her to go to sleep at 7:00 again they do not know my precious little princess . I told him she doesnt go to sleep until between 12-2:00am!! So tony and Jordan stayed in room downstairs after getting me and jessie settled in on 7 th floor. The tech had to put more electrodes and more glue on her head . And the. Wanted her to be still and sleep . Again this is not happening. I had to put her in her wheelchair just to strap her down. She ate and watched clifford and smiled a lot. Finally got her to sleep at 12:30. And I finally went to sleep on cot beside her at 2:00!! The tech told me on sat am that she started moving sound 4 but he was able to get what he needed . We dont have those results yet but another long but productive day . Jessie N Jordan Stinchcomb
Posted on: Tue, 28 Oct 2014 16:36:28 +0000