Saturday, March 11, 2006


My little brother, Bennett, is coming to visit this weekend and should be arriving any minute. :)This is the first time he is meeting Maxwell and cousin Thomas. We are sooooo excited to see him and share our beautiful lil' guys!!!

So tonight I have been trying to clean the house a little BUT apparently Maxwell has other plans for me. I can't leave the room for more than a minute without his monitor going off. For some reason he is having bradycardia (episodes of low heart rate) terribly tonight, but it has self resolved each time thus far. So since I am resigned to being in his room and he is busy snoozing, I thought I'd pull out the laptop and do a quick post!

This week, the dreaded Gtube "pull out" finally happened...eeks! He has been grabbing on the tube more and more, but it is pretty safe because of the balloon inside. However, the balloon had apparently deflated a bit and he gave it a yank, and out it came! Getting it back in was a little tricky. Knowing that you are inserting something RIGHT into your baby's tummy feels so invasive...and additionally, it didn't feel very good and he let me know that. Then just a few hours later I noticed it was loose again so I had to remove and re-insert a new balloon. And again he was miserable...sorry Max, but PLEASE leave your Gtube alone and that won't happen!!! :)

Earlier this week I met with a hearing and language specialist. She will be joining our "team" and what a team it is! I believe we now have nine specialties and five therapists!

We will be meeting with her one to two times per week, in addition to OT and PT. We are worried that Max isn't responding differently with hearing aides in place, but want to give it some more time. Additionally, the fluid currently in his ears might be causing this additional temporary loss.

Max is far behind on his language development (no babbling for example) and has a few issues (significant hearing loss, a very high palate, medical concerns) that will hinder his progress. She said his current communication skills would possibly be that of a three month old, which doesn't surprise me very much. But she was particularly pleased with how well he responds with smiling for me and looking for me when I leave the room! Max and I are in love! :)

ANYWAY, she said she feels "pretty good" about his chances in speech, but it will primarily "depend on extensive, intense parental involvement" with lots and lots and lots of therapy. Yikes for two reasons. First, that isn't much of a responsibility, is it? Second, even though I know hearing loss can hinder speech, I never really thought about Maxwell not being able to speak. Just the thought of him never speaking simply breaks my heart. I know there are other ways to communicate but I just am not ready to give up that dream of actually hearing "I love you mommy!"

Sometimes I wonder if I am overly optimistic with my thoughts of Max's I not being realistic? Why am I so determined and convinced that we will beat the CHARGE statistics? I guess that is the only way for me to wake up every day and go on...I ignore the "what ifs" and proceed as if we can accomplish anything and everything. I am hoping that is the best route for Max. :)

I best run...Max's milk is running low. I guarantee as soon as I leave the room, he will brady...crazy Maxwell! Have a great weekend everyone!


Sara B said...

depend on extensive, intense parental involvement" Lady-that is a TOTAL, PERFECT description of you. If that really makes the difference, then there is no problem. I have never seen any 2 people with the intense connection that you and Mr. Max's a beautiful thing and I'm honored to witness it. I know, I make fun of you...but it's so hard to resist!

Ruthie said...

Amy you are the queen of optimism and because of that you son is doing very well considering the circumstances. Its your love for Max that makes these little successes keep happening. Reality always enters when it needs to. So just focus on what you need to and the rest will fall into place.
Take care-

Steph said...

Hope you had a great time with Bennett!

On the How do you do that? I'm trying to imagine what that's like (I'm so scared of all things medical) and I'm just so in awe of what you're able to do for Maxwell. Wow. Wow. Wow.

On the hearing specialist...I just know Maxwell will talk. I just know it. You two are such an incredible team that the possibilities are endless. I truly don't think you're being overly optimistic...I think you just know what lies within you and what lies within your sweet baby boy.

Love you,

Heather said...

Maxwell will have a voice one way or another. Maybe the first time he says "mama" won't be with words but with sign. I doubt the meaning will be any less. As amazing as Max has been in the 1st few months of life, just think of what he can accomplish in a few years!
Was wondering what SLP you are seeing for speech... Brady sees Missy Bartel. Also I keep forgetting that "Brady" means "slow" in medical terms. I swear the baby books said "a broad island"! Ha, ha.

Anara said...

You two have made it this far, with love, strength and conviction. If you can make it through this, you can make it through anything....and you have tons of people here to help you see tomorrow.