Lennox-Gastaut Syndrome Diagnosis
Just wanted to take a quick moment to let everyone know that Kylee was back in the hospital on Monday and we are still here. Sounds like we are going to be here for awhile. We are at Children's Hospital in Milwaukee (about 2 hours from home). They ran lots of test on her and have found that she has Lennox-Gastaut Syndrome. I don't know a whole lot about it so it will be a learning process. Right now they are trying a new medication on her but because she has failed so many other medication she only has a 5% chance that this one will work. They said if that doesn't work there is a low carb high fat diet we can try however they would want us to leave her tube feed on that only eat a little by mouth for taste. Then there are a few surgeries also and 2 new medications that should be out so. So right now we are on a trial and error process.I really miss my boys (Jason, Collin and Keegan) and can't wait to see them this weekend. Hopefully we will be out of here soon. Not have a lot of time to write as Kylee has to have someone with her 24/7 so I just got out for a quick break. I'll try to post again soon.
.gif)
2 comments:
Awe, Get better soon Kylee, we all Love you and Miss You !
Love Your Cousin,
Christina Marie
Oh, I'm so sorry to hear this. I'm sure you've had a very long week. Hospital stays are not fun at all, but I bet the staff there is great and supportive. I sure hope that you find a solution that will work for Kylee. I read a post or two on the yahoo site about this diagnosis and it sounds like a few people are familiar with it. I've never heard of it like you. Why would she have surgery? She is adorable as can be and I sure hope she gets home soon with you and your boys. I'm sure everyone misses each other. Being two hours away doesn't make a quick trip home even possible. When Alayna was diagnosed we were 1 1/2 hours away and I think Dana only made the trip once during the week. I was lonely and getting stir crazy. So, I pray for you. Get out and take walks when you can...even if it is only to the cafeteria and back! I enjoyed getting a good coffee from Starbucks! Thanks for keeping us posted. We are thinking of you and praying for you. Life surely isn't easy for us is it? I know God must have a reason for all of this....I know that when I get to the gates of Heaven someday he'll see me coming and he'd better have a really good answer for me. I'll be listening! Take care.
Hugs from Illinois!
Post a Comment