How do I feel you ask? Excited, scared, nervous, anxious, and happy.
So many emotions for one day. She gained 1/2 pound in about 1 1/2 months, and that was with pretty much no feedings at all!! For most that is not a lot of weight, but now comes the time we have been dreading, that her growth slows way down, but for a child with Russell Silver Syndrome that is an amazing growth for virtually no g-tube feedings.
We have been working on more meals, less grazing and I am happy to say it is working very well. Shes starting to try new things like chicken and penne pasta, and thats without even starting feeding therapy yet! We start FT on Wednesday and it should be an enlightening experience, on how to help her as far as techniques, and helping her learn how to swallow things that aren't just grain.
I am so excited for her, mostly because when I told her about whats happening next month she said, "Good, I dont want this stinkin' tube anymore." That made me feel like we for sure made the right choice for her in going to CHOC. I am nervous and scared though, because I hate hospitals first of all lol, but also because the doctor said that 10% of patients with RSS still need to have their tube in order to grow and live, but 90% are able to have theirs taken out. Those are great odds, but for some reason that 10% just scares me, mostly because I know how bad Caitlin wants it out.
Also Caitlins teacher said the other day, "Sarah, shes thissss close to being a 'normal' kid, all she needs is the g-tube out and she will be like the rest of them". Some people would be pissed that a teacher would say something like that, but for us, that is our goal. We had some hard times in school, but now shes reading at about a 3rd grade level, excels in language arts, just a completely different little girl than even just 6 months ago.
Shes developing so well, and adapting to situations accordingly and it just makes us smile to know this is pretty much the last step in helping her lead a normal life of sleepovers, eating food, and growing like shes supposed too.
