yakety - yak. . .

{the bowl is back}

so it seems anyway.

Jack has had some rough nights lately. Wednesday, his overnight feed had to be shut off and he wasn't wanting to keep his O2 on either. He was really nauseated and retching. Thankfully the Zofran finally kicked in and he fell asleep just after 4am., then I was wide awake!

So we both were exhausted by 8am., I dragged Jack out of bed to get Logan off to school by 8:45am. His new 11am modified schedule hasn't been very successful, so far anyway. Or at least it hasn't helped him attend more days. But theres been some real benefits too, great for Logan, now that he doesn't need to worry about me showering first thing and getting Jack altogether--meaning the fighting with tooth brushing's and just trying to get him alert enough to dress. So Logan is extremely happy with this new schedule! He has a lot of anxiety about being tardy for school. The kid will pace the floors with a frantic look on his face, its very stressful. Especially when I'm struggling with Jack and anxious about trying to get him in the car and off to school.

Hopefully this isn't a start of a new cycle. The gas meds that I'm giving him 4 times a day now isn't helping like I had hoped. He still has stomach pain but more of that awful cramping. Probably due to his bowels trying to get the air out. He gets all Elecare and no blended food, in hope this will help eliminate the air accumulating. Thankfully his weight hasn't changed much, going down a couple pounds but then evening out ok.

Some positive news, although he isn't attending school much, only 1-2 days. His PT introduced him to the Alpha Smart which he loved! He can type and then it can be printed out. I really think this will help him keep up with his peers better. They often will be on their 3rd paragraph while Jack is still struggling on his first sentence. he still needs more time to learn it but I'm hopeful we found something that will allow him to participate in the class assignments.

Jack brought home his "letters home" notebook today. Its a project his Teacher started with the kids. They all have a notebook and they write in it every Thursday. They write a letter to their parents and then the parent writes back to the child. What a fun idea, love to read this book years from now.

Jacks 1st letter:

"went to the clinic 3 times today and another kid went 2 times and he went home"

hmmmm... now that's just sad. The "clinic" is the nurses office, he told me he was having some bad stomach pain today.

So now I need to write back to him... thinking on what I should say. I'm really hoping his next letter ends up being more about fun things and not just about ending up in the nurses office. Our poor kids, they live such a different life than their little friends.

Here's to better days ahead.