Now that we had the date for surgery scheduled we decided to have an early birthday party for Gage. We were told that because of the choking that it was almost certain that Gage would become non-oral once the g-tube was in. I think knowing that was what made the decision so hard. I couldn't fathom the idea of everyone sitting down for Thanksgiving or Christmas dinners and my child not being able to enjoy the food. It seemed beyond unfair. I was really starting to wonder how much more we could take. But we went ahead with it....and it ended up being a good move. Gage put on much needed weight and started to look healthier. As hard as the decision was I'm glad we made the choice to do it.
Once that was done we went ahead with trying to control his seizures. His neuro. played around with dosages...adjusted his VNS settings....but nothing was helping. It was around this time that the Dr. thought Gage had moved into Lennox Gastaut Syndrome We were devastated. Out of all of the different seizure disorders this was the one nearly impossible to treat.
Around this time Gage's neuro. moved from Chicago to Milwaukee and being that we're pretty much smack dab in the middle of the two cities we followed. It seemed we had come full circle. The very first neuro. we ever saw back when he was just a couple months old was in the very same clinic that his Dr. had moved to.
Because of the LGS diagnosis his Dr. revamped his medication and decided to put him on the combination of Valproic Acid, Felbatol and Clonozapam. The side effects of all of these drugs sucked. Gage was losing the ability to do anything. Therapies were pretty much done at this point because he was 3 and that's the age when Early Intervention stops. Not that the therapies ever really did any good.
The realization that Gage would never be normal was completely set in. The picture I once had of watching my son play baseball was gone and in it's place was vision's of me pushing a wheelchair. It hit Kris even harder in that aspect. I know how much he was looking forward to doing all the father son things. We were really discouraged but we had to keep going. What choice did we have??? None of this was fair or right or made sense. This was not how parenthood was supposed to be. I mean you hear about kiddo's like Gage but you never for one second think that could ever be you. At least I never did.
I know this part is short but I'm going to finish up the rest of the story next time...
October 11, 2007
Posted by Shannon at 6:50 PM