Just Another Day

I kind of threw this blog together forever ago knowing I needed a place to update people but never could find a good way to start it. I guess I'm just going to jump right in and here goes!

Over the past year I feel so grateful to have been given Riley and I learn to appreciate the new perspective I have on life every day more and more. Yesterday evening Wil, Liam, and I were sitting by the lake out front of Arnold Palmer relaxing. Riley had finally fallen asleep and we were enjoying being outside. When we were about to cross the road back to the hospital the Arnold Palmer ICU ambulance came around the corner to pull into the hospital. They had all there lights and sirens on and Liam thought it was cool. I told Liam that was the same ambulance that had come to get sissy when she was sick this weekend. He then says, "wow mommy that's cool, next time I'm sick I want to ride in that ambulance". I then tell him without even thinking you don't ever want to have to ride in that ambulance b/c it's only for really sick kids. Then I got the look... the one you get when just for that split second you realize you said how sick she really is, out loud. And he realized it too. It's so amazing how desensitized you can become when living in a hospital. Especially when you are lucky enough that your child looks almost perfect on the outside. I think there is also a strong unity among mom's with severely ill children. We may all seem rock hard on the outside but we all have our moments the ones where the reality of the situation hits you. The majority of the time however we just go on being as strong as ever because that is just what you have to do to get through this....

Riley had a good day and a wonderful morning she woke up smiling and having a great morning. As soon as the large dose of IV benadryl and tylenol got in her she went wild and proceeded to pass out for the morning. We almost made it through her IVIG without incident but 3hrs into it she woke up shaking and miserable. She ended up getting a temp of 102.6 and slowing the infusion and it still didn't help. It then had to be stopped but it's been about 8hrs and we are going to try to slowly start it again. She definitely needs every bit of it!

We are now fighting to go home. Everyone is trying to drag there feet for god knows what reason but we are ready to go! Liam gets so wrestles with the whole hospital thing and lets face it it's not a fun place for a 3 year old who isn't sick to live. But at the same time he is getting very upset when he's not here with us so we really have no choice. I cornered the GI on call and MADE him promise to have us out of here by Fri. at least. I had hoped for tomorrow but I suppose beggars can't be choosers... We are just happy another crisis has been diverted and we all made it out with no lasting effects and maybe we can breath a small sigh of relief until the next time at least! So, I'm off to go tuck Liam in at the Ronald Mcd house and then snuggle right into my hard and loud hospital cot. Just another day....