Friday Oct 30

Hello everyone. Jordyn is taking a nap, so I thought I'd take this opportunity to update the blog. Last night, Jordyn was very tired from all of the moving around she had done both with the therapists, and with Jon and I. We did a bit of our bedtime routine, including a sponge bath and stories. She had just fallen asleep when yet another doctor came in and woke her up. This time, we had to check her blood sugar right before bed. She hates getting her finger pricked, as was quite upset. They have been monitoring her blood sugar all day. The steroids that she is on can make a person hyperglycemic, so they wanted to keep a close eye on it. At lunch, her sugar was up to 315--very high. They decided to keep monitoring all night in case there were any spikes. Fortunately, the levels went down during the night, and they decided that it wasn't going to be a serious problem. We will have to keep watching it though, as long as she is taking steriods.

The nurses also had to re-tape her IV last night before bed. She had been moving around so much, it had began pulling out. This was quite an ordeal, and made Jordyn upset. They actually had to tape her arm to a board to keep her from bending and twisting it at the elbow. She really didn't like this, but was so tired that she didn't fight it too much. This just made therapy today a little bit more difficult.

Once Jordyn fell asleep last night, her heart rate dropped into the 40s. We were all very worried because she is normally in the high 60s-80s. I had a hard time sleeping because her alarm kept going off and her heart rate was so low. She was sleeping soundly. Finally they called in a doctor and he checked her out. He told me that he wasn't worried about her rate, because, although low, it was steady. Her oxygen was good, and her breathing and blood pressure were good. He said that with this disease (ADEM), there are not really heart problems associated. What he was worried about was blood sugar, and that seemed to be ok as well. Some people just have lower heart rates, and as long as all the other things are ok, there is nothing to worry about.

This morning was eventful as well. Jordyn woke up and was in good spirits. She wanted to look out her window. She walked over to the couch I slept on and we sat and looked out the window. Then the doctor visits started. The rehab doctor came in and told us some good news. Jordyn will have to go to rehab only 3 times a week, and she'll get to go to Community East, right by our house! She thinks that this will be sufficient to get to a full recovery. The neurologist team came in and they told us that Jordyn is doing very well indeed. They explained that this sort of disease is usually a one-time-only thing. Once a child heals from it, it doesn't usually come back--in 95% of cases. In the rare case that it does come back, it usually indicates that there is something else going on. But it is rare. We will have to check her blood pressure once a week, and get a kit to check her blood sugar. She will be on a course of steroids, gradually reduced in dose, for six weeks. We aren't sure when she'll be able to go back to school yet.

A little while later, I went down to visit with Olivia and Gloria in the cafeteria, and two carebears came to do physical therapy with Jordyn and Jon. A lot of the nurses and doctors are dressed up today for a costume contest at 1pm. I hope Jordyn is up to going and seeing all the costumes! Her IV was taken off and she was able to move around cord free. In therapy, they had Jordyn walk to the playroom and play a fishing math game. She did very well, controlling the fishing pole and getting down on her knees and up again. She had a little trouble with the math, and using her fingers to count, but we'll work on it. Next they had her walk up and down a set of stairs. She did ok going up, but going down was very difficult. She definitely won't be able to navigate stairs alone for quite some time. But she has made so much progress in such a short time--we are thrilled!

Now for the best news of all....ready? Jordyn gets to come home...Tomorrow morning!! We are so very excited! There is a lot we will need to do to get the house ready for her, like adding an extra railing on the stairs and a baby gate, a railing on the porch steps and maybe a futon in the living room. But we are ready to get home and get started. This also means that she will be able to dress up for Halloween and help hand out candy. It's the next best thing to trick-or-treating, and she seems excited about that. Well, that's all for now. I'll be sure to post any other news or changes as I can. :)