Monday, February 28, 2011

Howdy

I don't know why I can't get myself to work on this blog. But ANYWAYS. LOL
So Joey is off the Keppra, no more seizure meds and he is doing just fine. :) Taking both kids to the regular pediatrician today though, Joey has had a snotty nose for about a week and a half (I'm talking can't breathe at all through his nose, big green and yellow blobs coming out LOL) and Emmy has turned into a mouth breather, she seems so congested and I'm wondering if its her tonsils or adenoids. But everything is going really well otherwise. Even though the kids are yucky feeling, they are still happy :)

Tuesday, December 7, 2010

Finally, an update

Sorry I've been neglecting my blog!

So we started Keppra, and it changed his behavior to the point that it was interfering with his therapy. He would just scream and cry and would not stop. So I called his neurologist and asked if I could wean him off of it because he had never really even had a seizure, and it was affecting him so badly. He said yes (and wants us to come in and talk about other meds - not sure I like that idea) and while Joey was coming off of it, he had a seizure :( But I still think it was BECAUSE of the meds. He has been off of them for a while now and is back to his happy cute self. :) Oh, and his favorite movie is The Sound of Music! It's so cute when he watches it :)

Thursday, November 4, 2010

Results

Well, the EEG showed some abnormal spikes in the lower left part of his brain. So now we are the proud owners of Keppra and Diastat. He has never had a bad seizure, just little partial ones. But the neurologist seems to think he is at high risk for epileptic seizures so he wanted us to start Keppra. I hope Joey doesn't have any of the behavior side effects, he is such a happy guy and I don't want him to start being cranky or aggressive. :(

Sunday, October 31, 2010

EEG

Joey had an EEG on Wednesday. The reason we did this is because he had an episode a few months back that I think may have been a partial seizure. He had been acting himself at all that day, only had like one bottle, and slept pretty much the rest of the day. That night I woke him up to get him to eat. He drank about half, and then didn't want anymore, so I didn't push it. About 15-20 minutes later, he threw up. Right after that, he went completely out of it. For about 10-25 seconds he wouldn't respond to me at all. I shook him gently, snapped my fingers, clapped my hands, all while calling his name, and he didn't look at me at all. Once he came out of it, he wasn't fussy or anything, he just fell asleep. And slept all night without waking once. So that makes me think it was a seizure of some sort. We go back to the Neurologist this coming Wednesday to get the results, so I'll update then. If any other Hydro moms are reading this, I'd love to hear your opinion on whether or not you think this was a seizure!

Wednesday, October 6, 2010

I have a wonderful letter written by my blogging friend Jill. She wrote a letter meant for moms who have gotten the same diagnosis as us with Hydro babies, its an amazing letter of comfort. I just wanted to share it with you here.



Monday, September 27, 2010

Well...

it's been a long time since I updated! Joey is just chugging right along :) He is doing really well in speech therapy. He has already overcome most of his feeding issues! His therapist says he is now eating just about right for where he is physically. Not crawling yet, but sitting up unassisted, and rolls around like crazy. He still hates it on his belly, so I don't know what we are going to do about crawling. Maybe he will skip it and go straight to standing and walking!

We just got back from a weekend stay in Gatlinburg in a big cabin up on a mountain. It was so beautiful! It was a 4 bedroom cabin, with a pool table, arcade games, wrap around porch, and a hot tub! My parents came, and my brother and his wife, and their kids. It was tons of fun for Emmy, she had a lot of fun playing with her cousins. My mom planned a tea party for us, it was so cute! She found some cheap play dresses and hats, so the girls loved getting all dressed up. Joey hung out with daddy and papaw and Uncle B outside, he loved it! He loves being outside!

Joey having his morning bottle with Grammy, out on the balcony.

The view of the mountains from the balcony :)
Emmy and her cousin, Marlee, all dressed up for our tea party!





Thursday, July 22, 2010

Hi!

Ok, finally an update! Joey is doing great :) Still getting PT and OT, and I think we will be adding Speech Therapy because he is having some feeding issues. He doesn't like pieces of food so we are still doing baby food purees. We also have a new toy, a stander. He actually really enjoys it! He is low muscle tone and just can't seem to figure out how to make his leg muscles kick in and stand himself up. He does it in my lap sometimes, but never on his own. He is still not crawling either, but rolls all over the place. He also just had his SECOND hair cut! He has some long curly hair that I LOVE, but he gets hot really easily so we had to cut it so he would be more comfortable. He is such a happy boy :) My sweetie!