2 years

It all started with an ear infection (so we think at least) and led us to where we are today. Waiting, still, to hear from Kennedy Krieger to hear about when he starts his treatment.

Its surreal to think that its been two years, especially since he's only 2 years and 8 months old. This has been a struggle for most of his short little life. It's been worse lately. He's been eating only graham crackers and Puffs. No yogurt which seemed to provide at least some nutritional value. After a two week long battle with terrible diaper rash, he doesn't seem to trust it right now. He'll sit in his chair for the appointed 15 minutes that KKI recommended and stare at his bowl without touching it for the entire 15 minutes. What can I say? He comes about his stubbornness honestly. So Puffs and graham crackers and Pediasure. That's all. It's hard to see him have such a limited diet. I worry about his health all the time. I know that even with Pediasure, he's not getting what he's supposed to.

It's hard to believe that in a few months that he could be eating more foods. I won't say like a normal kid because we don't know that. But more foods. I try to not get too hopeful because just in case it doesn't work, I don't want to get my hopes up too high, only to be utterly disappointed. Steve and I were talking about how crazy it would be to see him take a bite of chicken or a peanut butter and jelly sandwich or spaghetti or broccoli or anything, honestly. I don't know how I'll feel to see him eat. I can't wait. I want him to be a normal kid, to do normal things and have a normal life.

I wonder what would have happened if he wouldn't have gotten that ear infection. Would he have stopped eating anyway? Would this all have never happened?

I know life is too short to spend any great length of time of the "what ifs" but I think this one will always bother me. Regardless, I hope he starts KKI soon. I'm calling Monday to see if there is any update to his start date since his original date of "January" is almost over.

NEWS!

I am getting really bad about updating this. Honestly I think its because we really haven't (hadn't) heard much. Until recently.

I heard from KKI before Christmas. It's true but I didn't update because honestly, I wanted to pretend like he wasn't going and try to have a normal Christmas and New Year's. For the most part, it worked. The kids both had a great Christmas. Steve got both Christmas Eve and Christmas off and got to enjoy the time with us. Anyway, back to the news.

I had called KKI because I was so sick of sitting in limbo, I was trying to find Daphne daycare and I needed a better idea of when he was going to start to find her a place to go. When I first called they had said early January. Like the first week. So like right now. But she wanted to check on something for me and she'd get back to me. Apparently, what she had to check on was Outpatient Therapy.

They want him to do 3-4 sessions of Outpatient Therapy before he does In Patient. They're hoping that it will cut off some time that he'll have to be there. They'll focus on getting him to stay in his high chair and stuff like that. She said doing that in Outpatient, they won't have to focus on it during his first week of Inpatient and they'll be able to dive right in with "fixin" him.

Anyway, that's where we are. His first Outpatient session is tomorrow. Luckily Steve is off and can go with me since I know that its going to be very hard to watch.

As far as Inpatient goes, he should be starting this month. Probably after the 15th sometime, once he completes his 3-4 sessions of Outpatient and they feel like he's made the progress they want him too.