Tuesday, July 21, 2009

How Good It Is...

...To sleep in your own bed! Isabelle and I both got a great nights sleep last night. I put her down around 7:30 and she was asleep by 7:30:15. She did wake up around midnight saying "No medicine" but went right back to sleep. All of the activity yesterday wore both of us out.

Did you know that if you are in the hospital and they order x-rays or other tests for you someone has to come "transport" you to where you are going. Even if you can walk on your own they have to walk with you down there and back. Well when Isabelle got her x-rays done yesterday we were "transported" down to the x-ray room. And by transport I mean I carried Isabelle all the way down while the transporter walked with us. We got the x-ray done and then I had to WAIT for the transporter to come back and walk us back to her room. Did I mention Isabelle's halo and vest are about five extra pounds of weight? And that there is no comfortable way to hold her because it is so bulky? And that we actually got two x-rays done yesterday so we had to do that twice? Needless to say my arm is dead weight right now. I can barely lift my coffee this morning. But, I'm not bitter about that. Not at all.

Anyway, many people have been asking me why Isabelle got to go home so early when we were told it would be two or three weeks after surgery. I asked the surgeons nurse and she said that Isabelle had done so well with her recovery and started eating earlier and better than most other kids that there wasn't really any reason to keep her there. Plus, her pin sites looked great and she was already able to sit a little bit on her own. So, they ordered the feeding tube to come out and for us to go home. So here we are.

Isabelle has adjusted pretty well to being home. When we got here she did ask to take her "hat" off. I guess she figured her halo is a hospital thing and since we are home there was no need for it to be on. I felt so bad for her but I had to laugh when she called it a hat. We have managed to find ways for her to sit and lay comfortably. We bought a study pillow for her to lean against and we prop some pillows up around it to keep her from tipping over. She doesn't want the pillows around her though to she still tips over some. She is able to lean forward and reach for stuff in front of her and sit back up on her own but she does tire quickly. The main problem I am having right now is that she wants to move around the house like she used to but she just doesn't have the balance and strength right now. I am sure after a week or so and she gets used to the extra weight she will be able to get back to almost normal. I'll just be following her around the house like a paranoid nut case but that's ok. We also bought a wedge for her crib so she is able to sleep at an incline and I can put her far enough up on the wedge to where the pin sites in the back are just above the edge. This way she is not laying directly on them which is both uncomfortable and apparently a big no no according to her surgeon. I also gave her a sponge bath last night WITH soap, finally. She doesn't smell so bad now. I am going out today to look for dry shampoo to wash her hair. If anyone knows where to find any or have any suggestions for a good brand to use let me know.

Isabelle woke up this morning in a great mood and she had a big breakfast. She ate almost a whole bowl of grits and drank almost a whole cup of "pink" milk. Also known as milk with strawberry Carnation. Right now she is propped on her study pillow watching Elmo and bossing her Aunt Sissy (aka Krista) around.

Even though we are home I will continue to update everyone on Isabelle's progress for those who are interested. I have also decided I am going to use the blogs for a book for Isabelle when she is older so I will keep writing regardless of whether people are reading them. I do hope everyone continues to keep track of us during this journey though.


  1. Good morning to all! I know everyone slept better with both of you home. Hope you have a wonderful day and all of you get some rest. I think your idea of a book for Isabelle is great. It should encourage her to know how far she has come and the goodness of God and his great love for her. Love you all, Aunt Linda

  2. Yay! I'm so happy you all are doing great.

    As for the dry shampoo, I would check out a Walgreens or pharmacy for that stuff. If no luck there, a medical supply store would have it.

    We had it to use on our hospice patients, but it was always supplied to us by a medical supply company.

    Good luck!

  3. I loved the "hat off" comment. She's so precious and I'm so glad you ladies had a good first day home. And, what a neat idea creating a book for Isabelle for when she gets older and for you to share it with all of us. Great things are destined for your little girl...
    Love, Amy