Wednesday, September 5, 2007

Our new routine...

Michael is doing better than we had ever expected. He is off all the medications except the anti-seizure drug which he will have to take for a year or two. (But we would like to get him off that as soon as possible as this particular drug can affect the liver.) He took the last of the steroid Monday so he has had quite a bit of swelling on the side of his head the last couple of days. He has also complained of a headache for the first time since we left the hospital so we assume there is some internal swelling too. I spoke to the surgeon's office and they said to raise his head while sleeping and it should go away in a couple of days. They also reiterated what a fantastic recovery he is having.

Michael is still eating almost non-stop! Part of that is from the steroids but I also read an article that said brain swelling can also increase appetite. We can't keep bananas, Rice Krispies, Popsicles or ice cream in the house. He has gained 5 pounds since coming home from the hospital (for a total of 8 pounds since the seizures stopped). He looks wonderful. He had gotten quite thin since all of his symptoms had started. He is eating breakfast for the first time since he was an infant. No matter how we tried, he just wouldn't eat in the morning. I wonder now if that was due to the slow growing tumor, if even before the morning vomiting started, he just didn't feel good when he woke up.

We went to an open house at our elementary school yesterday where Michael will hopefully be going to Pre-K in a couple of weeks. At first he didn't like school or the thought of going there. By the time we left an hour later, he didn't want to leave! He said tonight that he likes his new school and he can't wait to go (yeah!!). He is already making plans for what toys he would like to take in for show and tell and which books he would like to share with the other kids. None of his classmates seemed to pay attention to Michael's lack of hair and his large incision (phew!). I think by the time he goes to school, his hair may actually hide his scar.

The surgeon's office told us today what milestones to look for to gauge when we can send him. She thinks by October 1st he could go with some restrictions. They don't have formal gym class so Michael would just have to stay next to the teacher or play inside if they go out to the playground. Of course by October, there probably won't be too many outside play days left. He still has to be careful about getting hit in the head (for 6 months or the end of February) but we want to get his life back to normal as quickly as we can as safely as we can.

For now, Jeff & I are working opposite shifts since Michael can't go to daycare (the doctor's were pretty insistent about that). For instance, this week I worked 7 am - 3 pm and Jeff worked 4 pm - midnight. When Jeff works midnight - 8 am, I will work 9 am - 5 pm. And, when he is on days - ugh, I don't want to think about that. I am very lucky that my bosses are good to me and are very accommodating. Jeff has to work a double tomorrow (8 am - midnight) so I will be home all day and then I will work extra hours Friday (Jeff's day off).

I think Michael & I may go to the zoo tomorrow. He has been spending a lot of time watching TV & movies and the zoo would be a way to get him moving. That way we can get some safe, quiet exercise. I have to admit, I am getting to spend a lot more time with Michael since all this started and I guess that would be the one good thing to come out of all this.

Michael told me to night he likes being home a lot better than being in the hospital. I hope that means his stays there are becoming a distant memory. He has started to ask questions about his illness, which is like the Michael we know and love and is definitely a good thing. Thanks again to everyone for caring about Michael. JoAnne