Tuesday, March 3, 2009

Today's Appointment

We saw Dr. Senn today at the Developmental Center. He's pretty much the one over seeing everything right now. He spent two hours with us and gave us a few projects to work on until we go back to see him 3 months from now. The first starts tomorrow with the visit to the surgeon. Chase lost a pound since he was last at Children's 3 weeks ago. Dr. Senn would like Chase to have the feeding tube and have him on an overnight schedule where he's on a continuous feed overnight via a pump and then bottle fed during the day. He said Chase's brain just doesn't give him that craving for food that he needs.

Next mission...to see neurosurgery on the 19th (we rescheduled the feeding clinic). Dr. Senn wants some tests run to be sure there is no problems with *blood pressures in the brain, oxygen levels in the brain, atrophy in the brain, excess pressure in the brain...etc. etc...so he's requesting an EEG, a more detailed MRI and who knows what else.

From there he wants Chase to see a Doctor (not a therapist) that specializes in bracing. He wants special braces for Chase's ankles to give them as much support as possible. (Maybe he has visions of Chase maybe walking on them one day???) He also wants his back looked at for possible bracing. He thinks the kinesio tape is too weak to support his posture.

Basically, after neurosurgery, he said if we still don't have answers, he said we can go all over the US talking to neurologists, but we still may never get a diagnosis. Then he assured us that he and everyone he talks to is extremely "intrigued" by Chase. Hm, that just reminds us of when Trey was the most interesting case in the NICU...


OH! He DID say that Chase is exploring, reacting, and responding age appropriately to commands etc...told you he's a genius...cerebellums ARE overrated!!!!! :*)



  1. Awesome!!! That's good news! I love having goals to work on... And I love progress!

    I found a link the other day to a doctor who is specializing her research on cerebellum devlopment in micropreemie because... gasp... there is a link in missing cerebellums and extreme prematurity... I'm so happy to see there is a connection somewhere, and that the prognoses vary from one extreme to the other because that means our babies can totally beat this whole missing cerebellum nonsense. Who needs one, anyways???

    At any rate, wtg Chase!

  2. Hello!

    I found your blog and wondered if you had heard of the Oley Foundation.

    We offer free information and peer support for families with a member on home tube or IV feeding. Check out our website at www.oley.org.

    In particular you might be interested in the

    • Tube Feeding Tips page

    • Meet Patients Section (try all three links)

    If you have any questions or would like to be introduced to another family, feel free to contact me.

    Warm regards,
    Roslyn Dahl
    Oley Foundation Staff Member
    (800) 776-OLEY

  3. Hi...I emailed you a few weeks back and I've checked in on your sweet little man since then. I have children with similar issues. We live in Rochester but have been out to Children's in Buffalo for some medical procedures. I would highly, highly recommend Dr. Caty at Children's for the gtube placement if you go that route. He was WONDERFUL with our boys who had gtube placements and nissens last summer. If you ever want to chat, my email is bjencik@rochester.rr.com. Our children (we have 10) have a multitude of diagnosis, from Cerebral Palsy to Down Syndrome, Autism and severe GI issues. We've dealt with some of the same issues you seem to be dealing with. I know how difficult it can be and I give you a lot of credit. You seem to have a great attitude and your little man seems to be such a strong, handsome and happy kiddo. What a lucky family! You're in my thoughts! Britt

  4. YAY Chase for being such a smart boy! And.. LMBO about "cerebellums are overrated!" I'm still praying for y'all... I would love for your darling boy to become "boring" too! Of course, with his happy disposition, he could never REALLY be boring!