So it's been long overdue for me to update you all. I have been in a rug, and I THINK I'm finally coming out of it. I have been forcing myself to be in the holiday spirit. I haven't felt like shopping, decorating, wrapping, and I can't seem to get that warm excited feeling. I guess that takes me to why I'm so down these days.
Landon still hasn't had any improvement on the diet. And he of course isn't tolerating it at all. Now he is throwing up daily. He still hadn't drank anything in 8 weeks, so he continues to have the NG tube. He is going to the bathroom A LOT, even though he tested negative for C Diff. He also had a weird rash off and on, which I was told was eczema. Oh yeah, and he has been really fussy off and on. Not sleeping well some nights. His seziures are actually kinda getting worse. We are seeing a few more than usual, and they are pretty intense. He is also doing a very odd excited thing. Brent thinks it's normal, but I however have a bad feeling about it. It's when he is awake, which is different from his normal seizure pattern, and he is normally playing. His arms and legs stiffen and shiver, hands clinched, and his eyes stare at his right hand. It's on a few seconds and it's back to playing, and then 5-10 seconds later it happens again. Our neurologist said he though it was normal last appointment, but it's really odd? Anyone else see seizures kinda like what I'm describing?
We are taking Landon to Pittsburgh Wednesday to see a GI specialist. Our neurologist also forewarned me that the bar to stay on the diet is pretty high at 3 months. He said you need to see decreased seizures and toleration of the diet, which Landon has neither. So he said we may come off the diet sooner than planned. I'm just hoping I get my happy, healthy eater back when we come off!
I know our family has so much to be thankful for, but this dreary weather doesn't help at all with my sad days. I am very thankful tha Landon is continuing to make slow progress! I had a dream last night that he pulled himself up next to the Christmas tree! Even though it was a dream it was amazing...what are the odds Santa can help me with that? We had an amazing thanksgiving(being with family makes me feel better) so we are looking forward to Christmas! Hope everyone is doing well! Saying our prayers for everyone as always!
Xoxo,
Heather
Hi Heather!! Its me, Sarah... I really appreciate reading Landon's blog, we seem to have a lot in common... which can be very therapeutic, if u will. What u describes as unusual behavior does sound like seizure activity to me... I'm no expert but Nathanael (my son) does the same movements and are considered mini spasms. The stiffening on joints, the blank stare at his hands, or the clenching of the fists. I could be wrong but you might want to record a small episode and show your neuro. My prayers go out to you and your family...I hope you have a wonderful Holiday as well... You seem to be a very strong woman and a wonderful mommy...thank you for introducing me to your blog!!
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