Wednesday, April 19, 2006


His EEG for his possible seizures is next week, not this week. But I am feeling better about the whole mommy's gut instinct is telling me it's not seizures, but more like a "tic" behavior. We'll see.

He has been OFF of oxygen during the day for a week now...yes you read that correctly!!! It truly is unbelievable!!! However, the past few nights he has required more O2 but that isn't too surprising considering the condition of his lungs and how shallow he breathes at night.

What is a little frustrating is that during the day, it is difficult to get an accurate reading on his oximeter because he is always moving his foot which sets off the it is constantly beeping and so each time I have to think, "is that real, is he ok?"

We are in a "weaning" process right now. This week and next I have about two nights covered and then we are totally done.

Today we finally received Max's latest set of ear molds for his hearing aides. One side fits pretty well and was able to stay in for several hours tonight without too much feedback. However his "floppy" CHARGE ear just doesn't want to accept an aide and unfortunately that is his really weak side. Quite frustrating! These are brand new molds and the one already doesn't fit correctly. I am trying so hard in this area but we don't seem to be making much progress.

Max is working very, very hard on strengthening his neck and upper body. He was doing really well a few weeks ago but then took a few steps back...and now finally appears to be moving forward again. He prefers to lift his head slightly and then just throw himself over to the side so he can get off his belly. He is very insistent on this actually!

Our living room is beginning to look like a therapy jungle gym...we have nearly every therapy toy and unit that you could possibly imagine. I like to think the more variety the better! But it certainly is quite a comical sight!

This is an area in which Max has recently made some significant gains! So exciting! He is using his voice more and more...I love it, I love it, I love it! We talk back and forth all the time! It was very strange when he first started "talking" because I would be out of the room and hear him in speaker (baby monitors) and think "what is that???" I would walk in and Max would be talking to his foot. So funny!!! I so much want to beat the "verbal" challenge of CHARGE. I am determined to give him every advantage in this area.

Oh how we are trying! I am making a renewed effort to really push this issue but still keep it enjoyable for Maxwell...but that is quite a fine line! He pushes his tongue out a lot during eating, which makes it difficult, but his OT and I think it may be because of his extremely high palate...not sure. We try this at least once a day (basically just tasting and playing) and he does seem to enjoy it. I make sure to keep it very fun with laughing, tickling, and getting messy with food. Max loves to take the spoon and just play and play. At least he is accepting of the "process." I like to think we are making progress. :)

I attended my first Parent 2 Parent support group meeting this week. It was ok but I was really hoping to meet more local parents of special needs babies...most parents had older children. Fortunately I get immense support from my CHARGE groups, not sure what I do without that bond! There is an international list serv and several of us parents in WA state have formed a statewide group. I connect very well with these women...just wish we all lived closer so we could help each other out more! :) Next summer is the international CHARGE conference which I definitely will be attending. I hope to learn A LOT and connect with all these parents who have provided me an incredible amount of love, support and advice these past ten months.

I finally, finally took the time to go get a haircut. I know that sounds silly to post, but literally I have only had my hair cut once in the past year...just have totally forgotten about it! Wow does motherhood change your priorities or what? :) So I was very proud and excited that I finally made an appointment and I actually got a "new do" which I really like! And most importantly, Max approved! Upon my return he gave me a "Max Attack" and pulled me closer with my hair and then nibbled on my nose. What was funny is that Eliz and Jim were watching Max while I was gone and Eliz said that Max got totally confused and thought she was me...he smiled really big for her and tried to give her a Max Attack. She said it was very obvious he was thinking it was me. (And she was also very impressed with the strength of his grip!!!) Her baby confuses us too sometimes! Quite funny!

That's all for now...lots and lots of updates! :)


elle said...

wonderful glad you got some you time all mums deserve that love you

Drew said...

Lot's of updates! Thanks for keeping us posted. It's just so impressive that amount of progress he continues to make. I would love to hear him talking! That's pretty funny that the boys get you and Eliz's not like you look alike or anything. :)

Come on, a new hair-do and no pics!?! ;-)


Meredith said...

Thanks for all the updates. Maxi-Max is making great strides...and looking more gorgeous than ever! I remember when Jackson used get you and Elizabeth confused, too. Maybe one of you should go blonde:)

Sending lots of hugs and kisses - Meredith and Davey

Steph said...

I agree with Drew -- we want pics of the new do!! PLEASE!!! Come on, gorgeous lady!

And thanks sooo much for the updates on Max. We'll be anxious to hear the results of his EEG...but now I'm feeling better about it too since your instincts are so spot on when it comes to your beautiful baby boy...and what amazing news about the oxygen!!! Awesome.

Hope you're doing ok with the nurse weaning process...and that you figure out a way to build in some time for you with a nurse or trained person to stay with Max from time-to-time.

Love you lots,