Friday, February 6, 2009

New Wheelchairs, new ramps and Feeding Clinic Appointments, OH MY!

Chase was seen at the Children's Hospital feeding clinic this morning. His intake has gone down to half of what they want it to be and he is becoming more and more "congested" after he has a bottle (he still doesn't do any solids).

We are taking him next week for a scintiscan to check for reflux. On March 4th we have an appointment with a surgeon to learn about G-tube surgery which would also include fundoplication ( ). After this appointment, which is pretty much to educate ourselves on the pros and cons of the surgery, we will go back to the Dr. we saw this morning and decide whether we want to go ahead with the surgery. The doctor saw Chase eat a very small amount and heard the gagging that followed, he said this made him suspicious of aspiration. He did have a swallow study a few weeks ago, but he wouldn't eat much for it so they didn't get good results.

Because Chase is low weight right now he said we have to be careful because "Chase has very little reserve and if he got sick, he could get very sick"...this only makes me want the g-tube more. I went in there today ready to demand one (sounds odd, but we need to build the little guy up). The doctor said both cases have pros and cons, we keep feeding him as we are and he could end up with a serious case of pneumonia. If we do the surgery, there are the risks that come along with that as well.

On a fun note. The rep from Buffalo wheelchair came this week. We have Chase's paperwork underway for his "supercool wheelchair" and while we wait for it we get to keep the demo chair she brought which is nearly identical. We tested it out and took it to the hospital this morning (SQUISHED it in the trunk! LOL) It is SO nice.

We also have begun paperwork to get a ramp added to the house. I just learned today that we can get one to go over the stairs that wouldn't be permanent. I was very happy to hear that because we rent and I didn't want to make permanent changes. Our landlords said we can do whatever we need to, but this would just be easier.

Now we are on the market for a van, then Chase's Early Intervention coordinator is putting in MORE paperwork to get it modified for the wheelchair with a ramp etc...

BUSY BUSY BUSY! Hey, things are moving in the right direction, we're just trying to keep up!


  1. Hi! Just happened upon you guys on Kayleigh's page... Our son is a former 23-weeker who's now 10 months old... At 8 months they discovered he has cerebellar hypoplasia, no pons, and also a missing septum pellucidem. Daxton's cerebellar space was not filled with fluid, instead, the rest of his brain has grown into the space... We've gone genetic testing and nothing has been found. Our neurologist at first diagnosed him with Joubert's Syndrome, but that has since been ruled out. We, too, have no idea what the future brings, mostly because our son is doing so much already that he shouldn't be doing... And we can't see any delays so far that can't be explained away by prematurity and being in the hospital for 8 months... So we'll just let him continue being the boss :)

    At any rate, just wanted to offer you guys some support and let you know we're in a smiliar boat. Chase is so handsome, and I look forward to keeping up with your blog!

  2. Are you in Buffalo, NY? We live in Rochester but 2 of our boys had nissens and gtube placements over the summer at Children's. Dr Caty (ped GI who did the surgery)was AMAZING!!! Feel free to email anytime if you want to get a personal opinion about the surgery! Best of luck to you and...PS...Chase is adorable!!!!!


  3. Hi! I came across your blog from Kayleigh's and just wanted you to know Chase will be in our prayers! I have to agree with the other 2 posts, Chase is very handsome! It sounds like he is making great progress despite his diagnosis. What a guy! I think he is going to continue to amaze you. He is very lucky to have such loving parents.

  4. I found your blog from Kayleigh's page.
    As an infant I had a nissen fundo done and a g-tube put in, as a newborn, because I couldn't swallow anything.
    As an adult, I had my nissen fundo redone (11-04) and a j-tube ( goes into small intestine, not stomach) (8-08) put in, because my stomach stopped working.
    I know that Chase will be fine during thos surgeries, and I will be praying for you and him.

  5. I didn't realize that Chase was going to need a wheel chair. I'm glad that you are getting all set up with things that will make things easier for your family!