Saturday, September 10, 2011

our week in summary

Monday: Holiday. No school for Rhys. Cody and I "slept in" since the kids didn't get up until around 7 a.m., then we did some work around the house.

Tuesday: Zoe has MDO, which was rather horrible for her. Lots of crying, though maybe a tiny bit better than last week. Rhys has school, he's getting better about getting on the bus without fussing. Immediately after Rhys gets home we set out to the med center for a doctor's appointment. He isn't allowed to eat because he is being sedated for Botox. I work myself up thinking how crappy it's going to be watching him have Versed shot up his nose, but he really surprises me and takes it like a champ! Dr. writes scripts for new AFOs and a feeding chair for Rhys.

Wednesday: Rhys has school, we skip OT so we can once again immediately head to the med center for a swallow study. As a first time visitor I have to navigate through Texas Children's Hospital, and quickly learn there is apparently more to the West Tower than just the one building. I find the hospital depressing as it is full of children with various illnesses. While trying to rush to make his appointment I get attacked by the elevator door and walk away with only half the nail on my big toe. Swallow study reveals a normal swallow as we predicted, Rhys is starving because they contaminated all his food and brilliant me didn't bring extra. Once home I have a message on my phone from the pathologist who did the swallow study. She finds what appear to be enlarged adenoids and recommends an ENT visit. Enlarged adenoids are apparently a common contributor to eating issues so I'm beyond annoyed no one has mentioned this to us before.

Thursday: Zoe does a lot better with MDO, though she is still crying a little. I left her lovie this time so maybe that helped. Rhys has PT in the afternoon and did great! The PT thinks the Botox really helped, she was able to get Rhys to walk (assisted) in his gait trainer about 15 feet. Rhys is in a great mood all day, I am really happy he seems to be taking to his new therapies so well.

Friday: Rhys misses school to have a gastric emptying study. No reason to believe he's having issues, we're just trying to rule everything out in an effort to get his eating on track. Cody takes Rhys while I stay home with the kids. About ten minutes into the procedure I get a text from Cody saying "shoot me". I actually find that funny and think welcome to my world! No word on the results yet, glad it's over. Swim in the afternoon in which Rhys was completely fed up and refused to participate in any "monkey crawling" around the pool.

Saturday: Not sure how I managed it, but I got about 9 hours of sleep last night. Who cares if it was occasionally interrupted by a hungry infant, that's about 4 more than I normally get!

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