Friday, February 26, 2010


I can't believe it! This is the 200th blog post! What started out as a way to share photos and stories of our impending bundle of joy with family members in the mid-west, has turned into...well...I'm not quite sure what.

It has been a while since we've posted any medical updates, so hear goes...

Plastic Surgery:

Noah had a CT done of his head that his plastic surgeon is using to determine if any additional steps need to be taken in the growth and development of his skull. The doctor also feels that surgery can and should be done to correct the partial webbing between his middle and ring fingers. We have an appointment in a few weeks, so we should get more info then.


All is clear!

Ear, Nose and Throat:

Noah had a scope of his trachea done in December. The doctor confirmed his trachea and vocal chords are still fused shut. The decannulation surgery to take Noah's trach out will be quite extensive and the doctor wants Noah to be as big and strong as possible. We have another scope planned for the summer time but are thinking that we will have at least another year and a half with the trach. Such a love/hate relationship we have with the trach - it allows our son to live, but it comes with a whole set of problems and issues.


The doctor is pleased with Noah's feet and is thinking that he will only have to wear the braces at night for a few more months. Once Noah is walking exclusively, and putting all his weight on his feet, that should be enough pressure to keep his feet in correct alignment. Yeah!


The doctor is cautiously optimistic that Noah will have adequate site. Noah does have nystagmus (shaking) in his left eye, but it should not effect his vision too much. He now sees a vision therapist once a month who is helping him to focus on an object and move his eye to see rather than move his entire head.


Noah has surgery scheduled over Spring Break to fix the strictures in his urethra. It should be a fairly easy procedure and we are not expected to have to spend the night in the hospital. Yeah!


Noah had a host of blood tests a few months ago to check his hormone levels. Everything came out clear accept for his growth was actually a bit high. Nothing to worry too much about, according to the Dr. and Papa, but we're keeping an eye on it.


Noah had an upper GI done a few weeks ago because he has been vomiting more and more each day and we were afraid that his fundoplication was coming loose. Fortunately, the fundo looks great, but they discovered a hiatal hernia. We're waiting to hear back from the pediatrician what the next steps are.

Physical Therapy:

Noah has two physical therapy appointments every week. He is doing amazingly well and has made significant growth over the past few months. He is army crawling all over the place {he can crawl on his knees, but chooses not to} and cruising around all furniture that he can. We're confident that he will take his first steps in a few weeks. Look out he comes!

Occupational Therapy:

Noah has seen two occupational therapists in the past year to help with his feeding and fine motor skills. We have loved both therapists, but unfortunately, they have not been covered by our medical insurance. Noah's last therapist advised us to get his vomiting under control before we focus on that's what we're attempting to do. As of now, Noah WILL NOT put anything in his mouth that he thinks is food - he is strictly G-Tube fed. I think his oral aversion will take quite a long time to conquer {if at all}.

Thank you all for following along with us on this amazing adventure. Your thoughts, comments, prayers, and support mean more to us than you could ever possibly know. You have carried us through some dark times and are now able to bask in this awesome light with us. Here's to two hundred more posts!


  1. Is Noah getting any regional center services for OT (feeding)? And/or is he with CCS? CCS helps us get Speech/Feedin gtherapy done @ CHLA with specialist dealing with PMV tolerance.

  2. Congrats on 200 posts and we are looking forward to the next 200!! Noah is one precious little boy who we love and adore :)We can't wait to see him walking...H's got a few tricks to show him. We love you guys very much.

  3. For more information about vision therapy go to
    Dominick M. Maino, OD, MEd, FAAO, FCOVD-A

  4. This little soldier has made great strides in his first year! Thank you for filling us in on Noah's landmarks, as well as the areas that need work in the future. With stellar parents like you two, he will be able to meet any and all challenges and come out smiling! :-)
    God Bless You!

  5. Noah is growing up so fast! It's been fun to be a part of your journey!


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