Saturday, January 30, 2010

Good-bye feeding tube

On August 29th, 2007 we had no choice but to follow through with the surgery to have Ryan's feeding tube placed in his tummy. He was 10 months old, and simply could not sustain himself on the very small amount he was eating and drinking. The temporary NG tube in his nose was no longer a good solution for him either, since we knew it would be a longer term issue. So as Lauren and Zachary went to the outer banks to enjoy a trip with Grandma and Papa, Ryan made another trip with mommy and daddy to Akron Children's hospital for the surgery.

Although we hoped that it would only be temporary, there were many days that it seemed like he would never eat and drink effectively enough to let it go. It wasn't the end of the world, and we are thankful he had this as an option to provide the nutrition that he needed . Yet we are EXTREMELY happy to report that on January 16th, 2010 his feeding tube became a thing of the past!

In my last entry I mentioned we had planned to keep it in throughout the winter and basically use it as a security blanket in the event he got sick and needed extra nutrition or hydration. Well, on the 16th it came out accidentally. By the time I found it on the floor it had been out long enough that I was not able to put it back in (as I had done many times before), at least not without forcing it in. The option at that moment was to take him into the ER and have it placed , checked to be sure it was positioned correctly, and that no damage had been done by putting it in with more force...or keep it out. We decided that fate had stepped in and was trying to guide us in the right direction.

Despite encouragement from the on-call GI doctor to have it put back in, we decided that Ryan had proven his ability to eat and drink on his own, so we left it out. A moment we had hoped and waited for since the day it went in, sometimes patiently and other times not.

The doctor had still planned to use the feeding tube to add more calories to Ryan's diet if he were to lose weight, or stop gaining. This seems logical for most people. Certainly for me, the more calories I eat the more weight I gain. Not so for Ryan. Gaining weight somehow doesn't correlate with the amount of food and calories that he eats.

We are confident that he is eating a well-balanced diet on a daily basis, and he even takes in more calories than his older brother Zachary (who has become a rather picky eater) at this point! Ryan still won't drink milk, any flavor, any type...but he eats yogurt, cheese, cottage cheese by the buckets it seems. He gets calcium in many ways and we continue to introduce milk hoping he'll start to drink it someday.

Overall, he continues to eat and drink like a champ and it's clear that we made the right decision. He continues to blossom in all other areas as well. His speech and sign language are progressing quickly and becoming easier to understand for people other than me. He loves his school and continues to thrive in the preschool program there. There has certainly not been a decrease in his activity level. He has started running full speed with his walker, and can successfully (and very unsafely) climb and descend a full flight of stairs.

Well, until next time...things are looking great here! We are thankful for every moment with him, Lauren and Zachary and blessed in many ways.

Hopefully we will have a new video to post soon so you can see all of his progress yourselves!

2 comments:

  1. Hi I have come across your blog and look forward to following Ryans Story, as my 19 month old daughter also has WHS. I love connecting with other WHS parents.
    We too have a blog called Ellies story.
    Take care, Mel

    ReplyDelete
  2. Just wanted to say CONGRATULATIONS! I'm so impressed and inspired by your decision to leave the tube out, and give him a chance to eat on his own. WOW! BRAVO! Hugs from me and Stella.

    ReplyDelete