MIGHTY MAX UPDATE

Monday, October 02, 2006

VOMITING UPDATE

Many of you have asked how his vomiting issue is coming along. Well, it's about the same, maybe slightly better. I'm just so confused and frustrated on what to do.

It's about every other day that he vomits, and I am doing everything I can to prevent it. Just tonight everything was going great and we were right on track with the feeds. Then he wakes up from his nap and vomits like crazy. Very upsetting for both of us.

I am going to talk with pulmonary tomorrow and ask that we involve the surgery team again and get their thoughts. Something needs to happen. I know we don't want to put him through another surgery unless it is absolutely necessary, but this is also getting ridiculous.

EEG AND NEUROLOGY APPOINTMENT

Tomorrow EARLY morning we head back to Children's. He has an EEG scheduled for 8 am. Not too bad but I forget until this afternoon that he needs to be sleep deprived for the test, because they monitor the brain waves during sleep. Not sure exactly how I am going to do that.

We have a nurse tonight so I am thinking I will have her wake up Max at 2am and play with him. Then he and I will head to Seattle around 4:30 am and get there about an hour or so early. That way I can play with him and wear him out again, because I'm sure he will sleep on the way. If only he knew how to drive, this would be great. I could sleep and he could drive...perfect!!!

After the test, we have 5 hours until we meet with the neurologist to discuss the results. Not sure what we are going to do because Max will want to play, nap, etc. and I don't really want to hang around the hospital too much because of germ exposure. We'll figure something out. We might try and get the ultrasound for urology...hopefully they can fit us in.

I am trying to not get nervous about the EEG. My suspicion (I'm an eternal optimist about Max, I know!) is that everything will be ok, but he definitely has some strange head movements that are causing some concern. Each therapist and doctor has their own theory. Hopefully my gut is correct, but I am also hoping the neurologist can explain better exactly what is going on with my lil' guy.

PLAYGROUP

Today we had playgroup and Max was actually healthy enough to go! YAY! We had a good time, and Max even experimented another type of baby food. (The only bad thing was that it stained his brand new super cute outfit. Bummer!)

All the other kiddos were trying yummy banana bread but Max tried pureed carrots and beef. Hmmm...he better learn how to eat soon so he can enjoy all the yummy stuff too!

After snack time, Maxwell showed everybody his new "creeping" (attempt at crawling on knees but with head down). They were very impressed! :)

I am so happy with our Birth to Three program in Bellingham. We are very fortunate to have such wonderful therapists and an active special needs community. :)

Sunday, October 01, 2006

WAITING, WAITING, WAITING...

During our appointment, our endocrine doctor had to consult with a few other doctors regarding Maxwell. So in the meantime we had a lot of time to kill in the office. After doing a series of therapy exercises, we thought we would do another photo shoot. We always enjoy those! :) And of course, Max obliged and looked super adorable as always!

Hey Mom, I'm unsnapped here. Can you help me out?

How much longer do you think the doctor will be?

You've gotta be kidding me.

Well then, I guess I'll just kick back and relax.

GREAT DISTRACTION!

My camera seems to bring much joy to Maxwell, and it also serves as a great distraction for him during stressful times.

I used it during this week's blood draw and it helped tremendously!

Here's Max doing his new favorite face - Mr. Fish! So cute! With the camera out, he isn't even noticing that his foot is being warmed up to draw blood.