Thursday, December 10, 2009

Wrapping up week 7!

I can't believe it's almost over! One more week left to go! Looking back at our first week here, it is overwhelming to think how far he has come. We have learned so much and even though we still leave with lots of questions, he has made incredible progress. I can truly appreciate how difficult and involved feeding issues really are. I can't stress enough how blessed we are to have found the team at St Mary's. What we've learned here, coupled with the partnership of our therapists back home gives me so much hope that we are moving in the right direction, even if the steps are small.
Noah has been taking slightly bigger volumes of food this week, and they have introduced a few table foods in their whole form for his crunching and chewing exercises. Much like I would not throw a hunk of steak on Elliot's tray and expect him to know what to do with it, Noah has to learn the same. His food will be pureed for quite some time until he fully develops the skills needed for proper chewing, tongue movement, and swallowing. The only way to learn that though, is to practice. We are actually holding the food in his teeth and cuing him to crunch and chew. It's not always pretty, trust me, he does not like it, but he's getting better. We will slowly advance to gritty purees and thicker textures, but it will be awhile. I am excited that my "baby food making" obsession will be put to good use again! I love making Elliot's food! We have been encouraged to make Noah's meal times separate from our own so that he is able to concentrate without the chaos of typical meal times. We will continue to put him in his chair with a timer and he can not get up while we eat and if he expresses interest in our food, that's fine, but it will not be required of him just yet. I know Zane will be frustrated that a different set of rules applies to Noah for right now. Eventually, Noah's eating will be integrated into our mealtimes, just not right away.
I was questioning a lot of behavioral issues today regarding anxiety vs. 2 year old fits and how to handle certain situations. (seriously, when will I have a behaviour psychologist at my disposal again?) There are many times that you can tell Noah is terrified and other times that he's just being a toddler. Noah loves the therapists at the clinic as well as the other staff at the hospital, but many of them, it has taken the better part of 8 weeks for him to warm up to. Dr Clawson said that Noah kind of missed out on that part of his infancy where he learned to self soothe and with all the Dr's, test, surgeries, procedures, etc, he is so highly sensitive to people and his environment. We were having this discussion as we were leaving the clinic, and as if on command, Noah launched into a fit because he wanted me to carry him out and I told him "no". It was awesome, he threw himself down on the floor, kicking and screaming at the top of his lungs. What a perfect time for a teaching moment...I waited at the front doors while he pitched himself around on the floor in the hall. Dr Clawson just sat down next to him and waited it. Man o' man did we get some looks from people passing by. It was a beautifully orchestrated meltdown. In the end, after 20min, we won, and he walked to the car. Obviously, this was not one of those anxiety occasions we have been talking about, this was sheer 2-year-old will, that is freakishly strong!


Weylin and Tori said...

Wow! I can't believe that you are almost done! Don't you love the tantrums?! What else can you do but laugh, hiding it of course! After all the boys have been through, it is certainly great to see them doing age appropriate things!


bikurgurl said...

You go Mama! Having the willpower and where-with-all to take the time for that necessary teachable moment....I am SO proud of you!! When Xaven was two I would give in, give a sucker, and get on with the day . . . it's coming back to bite me now that's he's a three year old!

The time has flown by that you've been there and I'm so happy that you've been given so much hope and perspective on what Noah's path will look like going foward. Being able to see more reasonable expectations to give Noah the best outcome - you did the right thing holding out for the best answer and not just pushing through.

You are an amazing mother and I thank God every day that He gave you and Brian Noah to love, care for, and nuture! Noah is blessed to have such wonderful parents!

We love you all and are excited for your family to be reunited! Hope to see you over Christmas, but if we don't, know that we love you and you stay in our hearts and our prayers!

Love, Kelly, Jeff, Xander, and Xaven

Jaime's World said...

I am so thrilled that Noah has come so far in just a few short weeks. I'm sure they haven't felt "short" but in the grand scheme of things...
Jaime, too, does not know how to self soothe, I didn't even think of how that will affect him when he's a toddler and beyond...YIKES! Thanks for the eye-opener!
Wishing you a GREAT week this week!