Tuesday, May 19, 2009

Busy Two Weeks

Noah has had a busy couple of weeks with Nana and Papa. They have traveled to Children's Hospital several times for a swallow test, upper GI, stomach emptying test, renal ultrasound and voiding cystogram.

The swallow test was to determine if he had any physical reason that he was not able to swallow as well as rule out the possibility of aspiration. Noah passed with flying colors and is now working with his OT, Elsabe, on swallowing. She is putting small amounts of milk in a medicine cup and encouraging him to drink from the cup. Noah is not really a fan, but we're continuing to work on it.

The upper GI and stomach emptying tests were ordered by Noah's pediatric surgeon, Dr. Hodge. We are most likely going to put a G-tube (tube going directly into Noah's stomach) in that will replace his NG tube. We are also considering doing a Nissen Fundoplication procedure in which the top of the stomach is wrapped around the esophagus to create a "one way" valve that will not allow acid or vomit to come up.Noah also had an ultrasound of his kidneys as well as another voiding cystogram (pee test) in preparation for an appointment with his urologist.

He continues to amaze us in his development. He just LOVES to raise his legs and whack them down on any hard surface. Because of his braces and the bar between them, the noise and vibrations are quite impressive. Noah is also much more aware of his surroundings and enjoys looking at the pictures of a good book as well as grabbing my hair when I hold him.
This journey we are on continues to excite and amaze us. The ups and downs of Fraser Syndrome are many, but the love we feel makes it all worthwhile.

6 comments:

  1. Wow! Between you and Kc and Nana and Papa, Noah is in the very best hands possible. Team Noah is alive and well in a most visible way!! Noah is 100% boy with his LOVE of making a good racket. And you gotta love the book time - it's still a favorite time of day for the Tanner family. Keep on amazing everyone, Noah! Thank you for continuing to take us on your journey with you. We are always praising and praying...
    Love, Debbie

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  2. I can't believe you're almost 4 months old Noah! You're getting to be a big boy now.

    Love, Will and Jenny

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  3. We wish we could see you more Noah and be a part of your life more. Sounds like your Nana and Papa are doing such a great job of loving you and helping your Mom and Dad out! We pray everyday for all of you and so pleased to hear of the good news.
    Love, Grandma and Grandpa Jackson

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  4. You're little guy is so amazing. Don't you love it when they start to interact with you and grab your hair? And the hold they have is a death grip! Does he have acid reflux real bad? Is that what the surgery is for?

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  5. I had that Nissen Procedure done in 1997.

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  6. Yay! I'm glad the OT was finally able to start him on cup feedings. I'm not sure why, but OT exercises have been the hardest for me to keep up with (maybe because Mila hates them so much). Hang in there and keep up the good work! It will pay off in the long run :-)

    Launa

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