Whoops

Long time no see. Sorry about that. Life's been busy here like everywhere. I'm not even going to attempt to chronicle the rollercoaster of the last few months. Let's just say there was much more fighting with the school district, trying to get Little Man what he needs, and with Beans' school trying to get them to understand what having a chronic illness is. It ultimately came down to the district here is not willing to do the things needed to keep them safe and help them in the areas they need help. So I did something (again) that I said I'd never do - pulled them from school completely and we're a home schooling family now. Yikes!

Sure never thought we'd be here. We're only doing this short term until the end of the school year. Then we'll get them setup in the next district after we move to Connecticut this summer. Though its something I initially dreaded, the difference in both the kids is amazing. Beans is more happy and giggly than I've ever seen him. He's put on 5 pounds!!! since I withdrew him. I don't know if there was something environmental going on there that was causing problems, if it was just the stress of being in the classroom or what, but he's looking great! Little Man's learning comes and goes, he has trouble retaining what he's learned. Using hands on materials where he can see directly what you're trying to accomplish has helped him learn some skills we've been working on for years. I wouldn't say they're mastered yet, but they're starting.

Health wise things are a bit backwards of where they usually are. Beans is actually the stable one right now! Growing and gaining weight, no food is terrible on the mind, but so good on his body. I constantly think what a cruel disease eosinophilic disorders are: you feel terrible all the time so you never want to eat, but take away the food and you feel good and want to eat but can't. He sees the GI next month and we're hoping he can start food trials to find at least something he can safely eat.

Little Man is the iffy one right now. Emotionally he's doing very, very well. Health wise, not so much. He's lost 15 pounds since October. First it was gradual and then he lost a huge chunk in a matter of a couple weeks. He refused to eat and was having terrible tummy pains. The pediatrician double his Prevacid and he sees the GI early next month on the same day as Beans. He is back to eating and has put back on a couple pounds, but still has a lot of trouble with pain and only eats minimally. We're supplementing him with Pediasure until the GI appointment because he simply can't lose any more weight.


Beans will definitely be having an endoscopy to check the status of his eosinophilic esophagitis in May and Little Man is likely facing one as well, possibly even other testing to get his tummy feeling better again. Little Man may be facing more stomach surgery or the GI may have other ideas. We'll just have to see. Ideally we can manage it with meds.

I graduate from college on April 30th, May 5th we head to Orlando for the GI appointments, then we'll hopefully be making our big move in June, July 1 at the latest. I need to leave enough time between the GI appointment and when we move for testing, procedures, and all that fun stuff that needs to be in order before we transfer over to new doctors.

In the morning we're signing both the kids up for soccer! They're so excited. It's iffy whether Little Man will be able to handle it, but we'll never know if we don't try so we're going to give it a whirl. :D