Landon continues to refuse to suck a bottle, however, he will let it dribble in and drink it. It's so odd? I'm hoping it ends soon. He pulled his tube out again today. I tried to put it in both sides of his nose. After 2 attempts I gave up and we took him to the ER. WHAT A FIASCO! First they didn't have a tube to put in. Then they got one from the pediatric floor, but it was a size smaller than what he had before. A nurse put it in, and then pulled it out. She wasn't sure of herself. They called the doctor in and he did it, but they were so nervous they sent him for a x-ray. I know it's serious, but i'm assuming they have never done one! They actually told me they haven't. Good grief! I should have given it another try here at home...the tube is awful...my syringes don't exactly fit. So now the cap won't go back on because I had to stretch it for my syringes. It really never ends. After 2 hours we finally got to leave. They are ordering the correct supplies for "next" time. I'm praying there isn't a next time!
The diet continues. He seems to be doing better each day. Other than the bottle issues. No seizure activity today...that's a big WAHOO! I mentioned to Brent going on vacation and never coming back. I feel like there is only so much you can watch your baby go through. I'm sick of the needles, tubes, eeg leads, and other things to make him cry. I pray we wake up tomorrow, he takes his bottle, seizures end, and he starts walking. Am I asking for too much? Miracles happen!
Prayers being said as always!
Xoxo,
Heather
No your not asking too much!! as a matter of fact please continue to fight just as you have until those things happen. Then CAN happen!! One small step at a time. Hate to hear about all that trouble you had to go through to get a tube in.. These kids have to suffer enough as it is to have to go through that kind of ordeal at a hospital. Call and check in when you get the chance
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