Originally published 12/21/12
Well our first “business week” at Kennedy Krieger is quickly drawing to a close and I thought that perhaps the best way to keep everyone informed about what is going on may be a virtual letter. It has been a very busy week for the boys.
Our trip down to Maryland was great thanks to our speedy driver (thanks Justin!) I was able to even get some knitting done! (Note to self: That will probably be the last time I am knitting for the next 8 weeks. haha!) We went out to Bubba Gumps for dinner Sunday night for the boys “last meal.” It was right across from the hotel at the inner harbor and was loads of fun. The food was delish and Justin and I had a great time playing Forest Gump trivia. We didn’t do too bad, either. It’s too bad there aren’t any near us in Buffalo. The food was delish and the whole experience was lots of fun. The restaurant concept was very cool. The menus were ping pong paddles, the boys food came in little ships, and everything was delish! Of course Dom and Zac’s favorite was the blue Jell-o.
Our arrival at the hospital was truthfully nothing short of a whirlwind. Despite my determinedness to go alone it was very nice to have Justin there to lend a hand. The hospital was busy, VERY loud, and has taken quite a bit for Dom to get used to. After we signed in the meetings began. I don’t think that Justin even had a chance to catch his breath as we were ushered from one meeting to the next and then he had to leave.
Our “condo” is lovely (see pictures below!) The boys have tents on their beds to keep them from escaping in the middle of the night. They actually really like them and keep talking about how we are camping in the hospital. Since there are two tents in our room the sleeping quarters are tight. However, we have still managed to have fun crafting (thank you for all the crafting Christmas presents!) and hanging out with the nurses. 
My bed leaves something to be desired…However, it’s funny talking to some of the other moms here. The joke is that “you know you’ve been here too long when you accidentally put a hole in your egg crate when you are setting up your bed at night.” So far mine is pristine….but if putting a hole in mine might mean we get to go home sooner I might consider putting a hole in mine just so we can be home for Christmas.
Thankfully the hospital has actually had a few Christmas activities to help provide a diversion from missing home. So far we have had visits from Christmas carolers….
and the police! (Sorry for the terrible pictures…I took them with my camera, but forgot the cable to download them on my computer at home. As a result, I had to take pictures of the pictures with my iPhone….)
There are more and more visitors arriving each day. I think Zac is really enjoying the attention and holiday activities. Dom has enjoyed watching at them from afar. He is really struggling with adapting to hospital life….but he is getting better each day. I’m sure that in a few more days he is going to be giving people the grand tour! In the meantime he is busy charming all of our nurses! Haha!
But I should probably talk about the real reason we are here. So far they have been conducting a lot of assessments regarding feeding/drinking for both boys. They are being their typical selves…which is good. It gives the specialists a realistic picture of what we are dealing with daily. I was able to record one of their sessions. I like to call this one “Zac vs. the Cup.” ****I have tried all day to upload the video with no luck. I’ll have Justin show me how once he comes up next week! In short, the cup lost the battle and its contents ended up all over the table. Zac-1, Cup-0*** All the therapists have been pleased with the amount that both boys are eating orally and feel like decreasing their dependence on g-tubes is realistic. We just have to get them drinking! What that looks like…I’m not exactly sure. But as long as they are moving in a positive direction I’m taking it as a good sign! I’ll keep you all posted!
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