Andrew's year

There doesn't seem to be much happening around here. The boys are back in school tomorrow and hopefully we will have no more snow days. Planning for Scouts is starting to pick back up as we have several big events coming up in the next few months. I have to say that I am greatful to the upcoming leadership with the Pack committee. I am beginning to feel comfortable with stepping back and letting others take over. Which is big for me.

Andrew had his annual physical today. It was pretty uneventful as far as "his" physcials go. The main topics covered his GERD, seizures, sleep apnea, bowel movements (always pleasant) and his hamstrings. He also has some hearing loss going on which I'm not prone to do anything about as long it isn't a physical issues (wax, etc). With all the other stuff the hearing seems relatively minor and he seems to hear ok to me. I'm not sure what we would do about it anyway. He's already so sensitive to noises, which are also major seizure triggers for him.

So lets go down the list:

GERD (reflux)- We are having issues. Mainly because Andrew's mom is a dunce and lost the script from Dr Bishop for the Prevacid. So Dr W called in a new order which of course wasn't covered b/c it was a different dose and different dr so it nullified the prior authorization. *sigh So Loren called me from the pharmacy tonight because they wanted $300 for a 30 day supply of Prevacid. NOT!!! I was able to talk to the pharmacist and got that straightened out and hopefully we can get the reflux back under control. Although my friend Dawyn who happened to be a PA in Dr Bishops office and who now lives in a Alaska told me a wonderful secret.... Mylanta works wonders for the quick short-term relief of the GERD. So a quick 2 tablespoons through his Mic-Key gives some relief. (and yes, that is 10 pts for bad mom of the year).

seizures- They're baaaack! Yes, after a year and a half vacation Andrew's seizures have returned. I've been pretty hush hush about them because they don't seem too bad at this point, but they've been around since about September. He's having 1 to 4, 8-15 second myoclonics per day. Which is still much much better than what they used to be. We don't want to make any changes in his meds right now. I am not scared by this seizure monster, I am more scared of the meds at this point. We will re-evaluate if he starts having tonics that increase in number or if the TC (tonic-clonic/grand mal) start back up. At his worst Andrew was having up to 80 myoclonics, tonics and TC seizures per day.

sleep apnea- Dr W and I spoke at length about my concerns about Andrew's sleeping on his back. The thing is, that he sleeps on his tummy and wakes very quickly (30-45 minutes) if he rolls onto his back. We both agree it's probably because his airway is so floppy and he has to fight with his tongue falling back into his throat. Dr. W is more than willing to do a sleep study but I would like to hold off for a little while.

bowel movements- Will probably never get them the way they should be consistantly. Enough said.

hamstrings- They are so so tight and they make me sad. The hamstrings are the symbol (to me) of Andrew's not walking or sitting or even scooting. Dr Dietz wants to put any kind of hamstring lengthening off as long as possible. Preferably after Andrew hits puberty. It is starting to get difficult for me to get Andrew into his chair though. His legs cross and his feet get hung up under his butt when I put him in, add that to the thrusting and I need about another 2 arms to add to the eight I already have. I'll discuss this with Dr Dietz in April.

Ok, I think that covers the list. All in all it wasn't a bad appointment. I was pretty happy, no surprises and I didn't leave in tears. All of which is major progress over the last eight years.

So here's to another year!!! May this next one be better than the last.