Friday, October 16, 2009

I have been remiss in posting medical updates ...

I noticed I haven't posted any medical "news" in awhile and thought I should catch up.

A couple of weeks ago, Michael went to see his pediatrician, Dr. Swan, for his annual checkup. She thinks he is doing great and it was great to see her (she is still my hero). It was also time for Michael to get a couple of vaccinations.

Unfortunately, when the nurse came into the room with the needles, Michael had a complete panic attack! For a little boy who has had in the neighborhood of 75 needle "pokes" over the last 2 years with nary a complaint, his response was very unexpected and totally heartbreaking. Once they were done though, Michael calmed right down and admitted that it wasn't as bad as he thought it was going to be.

Then, last Thursday, the 8th, Jeff and Michael made the trip to Syracuse for Michael's last antibiotic infusion. That means Michael has been off chemo for 6 months and all of the chemo drugs should be out of his system. We are going to Rochester the first week in November for Michael's next MRI and if everything is stable, his port can come out anytime after that. And since I am in a constant state of worry about his port, I will be thrilled.

For instance, Michael loves playing soccer and his favorite position to play is goalie. Two Saturday's ago, Michael stopped the other team from scoring by taking a soccer ball to the face. The poor thing dropped like a stone and the coach thought he was out cold. But, he got right up and finished playing the game. Of course like all parents, my heart stopped and I was holding my breath until I was sure he was okay. Unlike most parents (who would have been upset that their child took such a hit to the face), all I could think was "Thank God it didn't hit his port."

Shortly after school started, we received a letter from the school's occupational therapist. She said she noticed some deficits in Michael's fine motor skills and recommended she work with him to see if we could refine those skills. She doesn't think it is serious and isn't even recommending we do any special testing at this point. But she is aware of Michael's medical history and thinks we should be proactive as opposed to reactive.

After I calmed down and started breathing normally again (okay - I admit I overreacted but after all this is something neurological we are talking about), we agreed to let him go to the special classes. He actually loves it! They do crafts and play games and after each class he looks forward to the next time.

But in light of this development, I have made an appointment to see his neurologist when we head to Rochester next month. And while we are there, I intend to restate my arguments on why we should try taking Michael off Tegretol.

I talked to Dr. Swan about it, and she agrees with me that trying to wean him from the medicine with the understanding that we would put him back on it at the first signs of seizures is a good idea. She also pointed out that Jeff and I are the parents and the decision is ultimately ours and not the doctor's. "Yes" I told her but doctors have a way (intentional or not) of making you feel like a rotten parent if you go against their advice. (Remember the surgeon that implanted Michael's port?) Keep your fingers crossed that I can be persuasive this time.

I guess that is all the news for now. Until next time, please keep Michael in your thoughts and prayers, JoAnne.

Wednesday, October 14, 2009

Did you hear ...

... about the six year old boy that was suspended for taking a knife-fork-spoon utensil to school? Well, last weekend Michael found a swiss army knife that belongs to Jeff and was fascinated with it. So, I thought it would be a good idea if we have a discussion on how taking something like that to school would be a big no-no. It went something like this:

Me: "Hey Buddy, you know that knife of Daddy's you were carrying around last weekend?"

Michael: "Yes."

Me: "You know not to take anything like that to school, right?"

Michael: "Yes Mama. Why?"

Me: "Well there is a little boy the same age as you who took a camping utensil to school and he got in big trouble because it was against the rules. And now he can't go to school for a while"

Michael: "Oh." (He thinks for a minute.) "Why can't he go to school?"

Me: "Because the rule says that if you bring something to school that could be considered a weapon, you get suspended. Do you know what suspended means?"

Michael: "Yes. Dad told me."

Me: "Good. We don't want that to happen to you."

Michael: "Don't worry, Mama. I got in trouble in Kindergarten for taking a screwdriver to school and I won't do that again."

Me: "Ouch." (That is from the pain in my neck from whipping my head around so fast to look at Michael.) "You took a real screwdriver to school? When?"

Michael: "Last year and the teacher told me not to do it again, so I won't."

Me: "Well, good. I am glad we had this talk."

And, since Michael has carried tools around since he first learned how to walk (although they are usually toy ones), I am extremely grateful that Michael's school apparently has a lot more common sense than that of the little boy in the news.

Please keep Michael in your thoughts and prayers, JoAnne.