Sunday, February 26, 2006


It is soooo wonderful and reassuring to see our dedication and intensity pay off! YAY! Max and I have been very focused on his oral therapy, and while he was making some progress, it was a little slow. And I was getting worried when we would reach a breakthrough.

As a reminder to everyone, Max only receives nutrition through his GTube and has never had anything orally. Most CHARGE kiddos have significant issues with swallowing and breathing due to a variety of reasons and some do not eat for many years. In addition to that, Max tends to breathe somewhat fast (better than before but still an issue) so he is at more risk for aspiration.

So when babies do not eat by mouth AND they are intubated for long periods of time (like Maxwell), they can develop serious oral aversion. (BIG issue when we approach eating down the road....and oral aversion is already a big issue with CHARGE kiddos b/c often they have intense issues with senses). To help with this, we have been on a fairly strict oral therapy program...different textures, techniques...anything to let him know that the mouth is a happy place and not to be afraid. I have bought a million and one gadgets and binkies to let him explore. Between therapy appointments, constant work with his mouth, and all these different gadgets, something had to click.

Well sure enough, everything "clicked," and in recent weeks Maxwell has made tremendous gains and I am absolutely thrilled...beyond words!!! GO MAX GO!!!

Last month he really started to explore his mouth, but just recently he actually learned how to truly suck his thumb and it is soooo incredibly sweet! He has learned to LOVE his mouth.

AND I have been so longing for the day that Max would voluntarily put toys in his mouth...well that day is here! I AM SOOOO EXCITED!!! He shoves everything in his mouth now...literally everything and sometimes all at once!!! So funny and so absolutely adorable!!! He gets very intense and sometimes frustrated when he can't get the object in (still working on some eye and hand coordination), but he is very determined and with a little mommy help, he gets what he wants!!! He is making big progress on this every day!

We have been working hard with him to get a "good suck" with his binky but that is really hard since so many months of the instinctual phase have passed and because of his very, very, very high palate (which makes it difficult to get a strong suction). But that too has been falls out a lot still, but he does love it when it is in and every day it seems he is doing better and better with it!!!

AND drum roll please....I am also SUPER excited because we hit a milestone this week (I think!). We meet with the Speech Therapist tomorrow morning and I am also going to put a call into his pulmonologist and I am hoping they are as thrilled as I am. What I have learned in my brief time in this role as a "special needs mom" is that sometimes you must trust your own instinct. So I did!

On Max's eight month birthday, we went to the grocery store (yep, you read that right, Max joined me!) and picked out some yummy delicious fruity baby foods and went home and tried just the tiniest of amounts...literally like less than a pea size, but still that is a lot compared to nothing! And he really, really got into it! He especially loved playing with the spoon (as pictured here!)

We have been doing this every day since...again, just the tiniest of amounts but he really seems to be getting into it. And so am I! The first day the food got all over my shirt and I was sooo proud. Felt like such a badge of honor for a mom! (Didn't even change my shirt until the next day b/c I was so happy about it!!!) We have waited EIGHT months and to even have baby food in my cupboard is thrilling!!! :) This lil' guy amazes me each and every day!!!

Pretty amazing, isn't it? He is 100% incredible! He fights hard each and every day to get strong and make progress developmentally. Thank you everyone for your continued prayers...the support nationwide continues to be overwhelming and heartwarming! :)


Kerry said...

Amy - this is such wonder news! Congratulations Mr. Max!!! Good for you!!! Amy, you can give the credit for Max's progress to yourself and all the hard work you do working with Max, loving him and caring for him. Your persistence is paying off. God bless you!


alisen barlean said...

GO MAX GO!!! Before you know it, he'll be eating everything in the house!!! Mighty Max defeats yet another obstacle! Great Job li'l buddy! Lots of love, Ali

Drew said...


That is such great news and a real testament to the hardwork, dedication, and love you have provided sweet Max. Congratulations lil' buddy. As always, those are adorable pictures too! fruit!


Anara said...

What a big boy you are Max!!! You and you're Mommy have worked VERY hard on you're skills and it looks
like you have got the hang of it!!
You are such an amazing boy and it's a joy to have you in this dreary world of our's. You keep up the great work Maxi, we sure do Love you....
Love you two,

Anonymous said...

congratulations to you both. how incredible and wonderful. thank you so much for continuing to share max's successes with us. I love reading about him daily.

Keep it up Max!! Wait til you taste your first happy meal at Mc Donalds!!

rebecca said...

You are the man Max! I am in love the the thumb sucking picture; there is nothing more adorable than a baby sucking on their thumb. Max, with a great mom like Amy, the skies the limit. Keep the good work up.



Ruthie said...

Max you are on fire!! Keep up the great work. All this progress is amazing and so wonderful to read about! Congratulations on yet another success!
Take care-

Dana said...

I am thrilled to see the pics of Max enjoying his thumb, toy, and spoon!! You are doing a wonderful job as a Mommy, Amy.