Wednesday, December 16, 2009

Graduation Day!!!

Tomorrow, Noah will receive his diploma for completion of the 8 week intensive feeding program! They had a graduation party for him today, complete with cap and gown! Pictures soon! What a bittersweet time it is to be packing for home! We are so unbelievably ready to get home and back to our "normal" lives, but we are going to miss everyone here to much! The therapists and Dr Clawson have given so much of their time, dedication and love to Noah. What a truly gifted group of people and we so grateful for the work they have done with him! They have made this time go by so fast and they feel like family to us now.
Noah will be leaving the clinic eating over 25% of his daily caloric needs, as well as major improvement in his oral strength and muscle tone. We have pretty well confirmed an allergy to milk casein (after a reaction to straight cow's milk last weekend), so we will continue to avoid milk and follow up with allergy testing at home. I think we have been able to manage his high stomach acidity and still look forward to seeing a GI specialist in the near future. His retching continues to be a major issue, but we have been able to slowly move forward with volume in the last week. We are transitioning to pureed table foods of different varieties and he is still accepting over 2oz of formula from a squeeze bottle. His speech and language continues to improve each day. I can't tell you how happy I am to be writing all of the above, when I think where he was just 8 weeks ago, eating virtually nothing by mouth, 100% tube dependant, underweight, chronic diaper issues, skin issues, ranking a 0 in almost every area of muscle tone and strength in his face and mouth, and a vocabulary of only 25 words. I know a lot of work remains, but we have a huge start in the right direction!
There have been so many people "behind the scenes" that have done so much for us to make these two months a possibility. It has been a huge family commitment for us to be here. Our parents have been amazing and have never left us in need of anything. Brian and I are so very blessed to have their unconditional support. Even when things didn't work out for Elliot to stay here, they never hesitated to step up and agree to keep him. Elliot and Zane have hardly even noticed that I was gone! From the weekly care packages to phone calls and emails, we have once again been showered with love! And, as if I didn't already know this, I have once again been reminded of what an amazing husband I have. Brian has been relentless in his ability to keep things going at home, take care of the boys, and keep me emotionally buoyed this whole time, and still work full time and make weekend trips to Evansville. He never faulted and kept a great attitude 100% of the time. I don't know how I got so lucky, I have the best husband in the world. I never even got one call that the house was on fire or that the cops had to break up a wild party...:) Which is more than I can say for here, when it comes to fire at least!
We are officially "outta here" tomorrow afternoon! We hope to be home late tomorrow night!!
Thank you for faithfully checking in on us and as always for your continued prayers!


Jaime's World said...

YEA!!!!!!! Congratulations are in order to ALL of you! You all MADE IT!
Sooooo happy that Noah's better in many ways!
Wishing you continued achievements at home!
Safe travels!

Sue mom to Emily LCDH 1-22-08 said...

You've had a very busy 8 weeks. Glad to hear this program was a success for Noah! He has made HUGE progress..hopefully he'll continue with this trend at home. btw, I haven't forgotten about our "chat" I just don't have much time these past few weeks. Maybe after Christmas life will slow down a bit. I'd love to "talk" more about these feeding issues.
This program sounds so good, but I just don't see me being away from home for 8 weeks. What's the name of this clinic and where is it located?

Congrats again, can't wait to see the pics!

bikurgurl said...

We are so proud of Noah, and so happy for your whole family! You are all truly blessed!! :)

We love you!!

Kelly, Jeff, Xander, and Xaven

Aep said...

That is such great news!!! I am so happy for you all and Noah!! My prayers for continued progress!!
Happy Holidays!
Hugs, Ana

Elizabeth said...

Yeah! And you should be so proud of yourselves. I am just in awe of you all! Enjoy home - and I hope you have safe travels and a wonderful holiday!

With thoughts and prayers,