Monday, February 27, 2006

DEVELOPMENT / HEARING UPDATE

This morning we met with the speech therapy team for the first time. I was sooo excited to share the good news with them about Max's oral progress. They too were thrilled! They encouraged me to continue trying different textures, toys, tastes, etc. (I of course have already run to the store and bought a bunch of new toys and foods!!! So fun to do that!!!) The next step is to order a swallow study to see how much we can push Maxwell with food and liquid. However, first he has to be able to swallow 10 cc's and we are definitely not there yet.

So while the session was great because of that, we also discussed at length his communication skills. And after our "interview", they classified Maxwell as "severely delayed" in this area. While I know he is far behind, it always hits you in the gut to hear such a classification. But I am definitely getting a thicker skin because it used to REALLY bother me, now I just nod and say yes, I know we have a lot of ground to cover...we are going as fast as we can! :) And then I always point out all the amazing progress he has made already!

I am really going to put a lot more focus into Max's hearing and communication. We have tried but it is really hard with the other issues going on too. He has a significant hearing loss (severe in one ear and moderate in the other) which is one of the main reasons for his "severe delay." He has hearing aides, however aides are not easy with a baby with weak muscle control. He cannot sit up yet and therefore his aides easily get knocked out of place when his heads move from side to side. And then all he hears is a buzzing sound...not pleasant. Additionally, his "funky monkey" ear doesn't have much good cartilage to it so it barely holds the aide in even if he is sitting still. And of course the inevitable...Max has learned how to take out his own aides!!! The other day was hilarious. I put his aides on and left the room for a second to grab the phone. Came back in to find Maxwell had taken his aide off (even with the tape that helps to hold it on) and he was sucking on it like a binky. Nice $3,000 toy Maxwell!

Currently we try his aides for short periods of time throughout the day, but I am really, really going to try for even more time. Not sure yet how, but we will find a way. (Hard to focus on the rolling over skill with aides on...just doesn't work!) I am hoping we can see some progress in the next month or two.

We are adding yet another specialty to Max's team....a hearing specialist who will help me learn what he can/cannot hear with/without his aides and what we can do to improve his communication. Additionally Max and I are going to start working with baby sign to give him an alternate way to communicate. Really looking forward to that...hmmm, when will we fit that into our day??? Definitely worth it though!

What is encouraging is that Max is ahead of a lot of kiddos in having his hearing loss defined and getting hearing aides. A lot of CHARGE families that I know did not learn about their child's hearing loss until 10 - 18 months old. So hopefully being "ahead of the game" will help Maxwell...and it eases my mind at least slightly.

7 comments:

Nancy F. said...

Amy,
The pictures are super -- especially the thumb sucking one! He is so adorable, you know. And, Amy, you are absolutely amazing in how much you have accomplished with Max's treatments and therapies. I know God has given you courage and strength.
P.S. I miss you back here in Elkview.
Nancy

Anara said...

It sounds like your apt. went fairly well, and that Max is ahead
will really make a difference. I can just see Max with his hearing aid in his mouth going "this is different". What a cutie!!!
Lot of Hugs, Kisses and Snuggles
Love you two!
Anara

roxanne said...

Amy and Max:

You are truly an inspiration. I start each day reading your blog.
I keep you in my prayers.

Roxanne from WV

Rixmanns said...

Amy, we so enjoy reading of Max's progress. You are such a wonderful mama. Max looks so wonderful and it is just amazing how far he has come. Your love and dedication are such an inspiration. Max may be "delayed" in the eyes of medical professionals, but he will be so far ahead of most children emotionally and mentally due to the devotion of his mama. We pray for your strength and wisdom in caring for your little miracle.
Love,
Leah Rixmann

ang said...

Amy you are gonna just love baby sign..I just have this feeling Maxwell is gonna take off on that and it will help you so much talk to each other even more..

Wait until he learns the signs for milk and cookie...

I'm so excited for you both.

Jaye said...

Amy...I taught all my kids babysign. They catch on SO quickly and it is a God Send. I never had crabby babies, cause they could always tell me what they wanted long before they could verbalize! And how cute is Max going to look asking for 'more fishy crackers'? hehe..

michelle f. said...

Amy,
You are doing such wonderful things for Max. The baby signs are easier than you think. The hardest part is getting into the habit of doing them each time you say the words. Before long you don't even realize you are doing it but Max does and he is learning from it. We started with the book "Baby Signs". It is great and the signs are for younger children who still use their hands symmetrically. Some of the sign books are for older kids who have more control over their hands.

Keep up the good work.

Michelle Friend in WV