We had an amazing turnout at our fundraiser this past Wednesday. It was very humbling to see everyone there to support the kids, not to mention the silent auction was a riot! People really got into it. We're looking forward to doing it again, hopefully in August. Lori, you are amazing for getting this all set up so quickly!
I also took Sam and Claire to the developmental pediatrician. They are hanging in there, but there's some new neurological things she's seeing that are definitly concerning. At this point Sam doesn't have to go back into his braces, but we're keeping an eye on him.
Sam's been having a rough go though, poor guy. Last week we had to have him fast for 6hrs for a test. Turns out the wrong test was ordered and he never should have fasted. I got him hooked up for a feed as soon as I found out, and gave him a donut but he was off all day. That evening he collapsed while we were out shopping. He was laying on the floor crying and holding his head, screaming that his head hurt. I got water in him right away, and some food until he could get hooked up, but it wasn't until the next evening that he started looking a bit better. So, from here on out Sam is not allowed to fast, ever. If there's a test or procedure that needs to be done he has to be admitted the night before and put on an IV so this doesn't happen again. And, if that's not enough, he had an episode on Tuesday. He bounced back fairly quickly, but he just doesn't look right to us. The geneticist thinks that the heat is making things worse, so we're trying to work out a calculation of how much fluids he needs on certain days to try and help the kid out a bit.
Miss Claire's surgery is set for June 30th. We check in at 9:30 for an 11:30 surgery time. It's expected to last 3-5 hours. They are doing a pyloriplasty (putting a tube between her stomach and small intestine) to help with her stomach emptying so slowly, and per genetics they will be placing a g-tube. They are also taking a skin biopsy for genetics to take a look at. The surgeon will also take a look at her Nissen to see if it needs to be tightened at all to help with her reflux. I can honestly say that this surgery absolutely terrifies me. I know that 3 surgeons, a geneticist, and GI Dr have all decided that this is what's best for her, but damn she's my baby! She will spend a minimum of 5 days in the hospital, and last I heard she was having a contrast study on Friday to make sure her intestines aren't leaking before they let her eat. She's going to have such a tough time.
I hope that everyone has a fantastic weekend! My step-dad is coming over to help Carrigan build shelves in the garage for extra storage. Who knew I'd be so excited about shelves! LOL