Friday, April 07, 2006


Sorry we haven't posted for a few days, it's been busy! We have been running around to various appointments, researching financial support and CHARGE information, and dealing with a few different medical issues of Maxwell's. Additionally, there have been several nights this week without a nurse, but we have done pretty well. I sleep beside his crib and I must sleep pretty lightly now because the beeps easily wake me up and alert me to any problems. Last night he had a pretty good desat (73) and I jumped up and was pretty scared for a moment, but luckily he resolved it without any intervention. Crazy Max, always keeping me on my toes!!! :)

Today we had a trip down to Children's to meet with Max's audiologist. Yay, he currently does not appear to have fluid in his ears...this is great news. We are hoping it stays this way and he does not require tubes (which can hinder the ability to wear hearing aides due to his "craniofacial differences"). We got him fitted for new ear molds...he is growing out of them so quickly and once they are even a little loose, you get feedback and the aides don't work very well. Additionally we got them programmed a little stronger and we are HOPING that helps Maxwell. We are planning for another hearing test in June...perhaps a sedated BAER or if he is developmentally doing well, we may try a response oriented test. I hope he can do the latter! Ran into several of his doctors and nurses and of course they were blown away with how great Mr. Max is looking! Always fun to show him off! :)

We had our various therapy appointments this week and everyone is very impressed with his recent progress. So exciting to brag about his new "tricks"...lifting head, rolling from side to side, verbalizing more, touching toes. Unfortunately, he is not wanting to lift his head as much like he did earlier this week. He seems to be quite particular about when he wants to do his therapy and when he doesn't. But progress is progress so I am not going to complain.

Then yesterday afternoon we had our car seat checked at the police station. They were incredibly helpful and gave me extra tips to adjust the car seat now and in the future to help ensure his safety with his low muscle tone. Such a great service they provide...I recommend every one does it. Even if you think the seat is in properly, I guarantee they can tweak it to make it even better! I had it near perfect but now I feel much better having it checked by them. Thank you Bellingham Police Department!

Max is zonked right now from his long day on the road, but soon he will wake up and we will get going on our favorite activity - BATHTIME!!! So I must run...and get everything ready for him.

P.S. My biopsy came back negative - yay! :)


ang said...

wonderful news on your biopsy amy....

Congrats to Mighty Max on his mini accomplishments this week.

elle said...

godo oen max and amy ive got my charge blog if u want look go hugs ellen

Drew said...

So relieved to hear the biopsy came back negative! Max really does seem to be making some serious leaps recently. Kudos to both of you.


iman said...

That's awesome news. He looks too precious in those pictures. The dog hat!! I'm sure he'll give you a lot of grief on that one when he's older :)
Love to read your posts.
so glad to hear the biopsy came back negative.

Steph said...

what a relief on the biopsy results...phew!

and so wonderful to hear about all of max's latest "tricks"...such amazing progress.

of course i love your plug about getting child safety seats checked out...right up my alley!

love you,