Monday, March 30, 2009

More Benefit Pics

Benefit pics preview:

Here is a preview of our fantastic evening:


Thank you for a WONDERFUL evening! We are still overwhelmed by the turnout and the support. I want to thank everyone who came, made a donation, sent a basket, collected gift certificates, helped prepare in any way and took the time to help us.

Thank you so much to all our elves who came early to set up and stayed late to clean up. Thank you to everyone for your patience with us over the past few weeks while I've been a little "stressed". Thank you for all the cards, letters, checks and "anonymous" donations.

Thank you to the gentleman in Orchard Park, a perfect stranger, who felt compelled to help Chase and sent $500.00 after he opened the paper to Chase's story.

Thank you Paula, for making me cry. I was so touched by the bouquet of daises and roses placed on the bar with candles in Trey's memory.

Thank you Michelle, Toby, Paula, Mike, Patty, Tom, Jake, Erin, Merrie Jo, Clark, Dawn, Clark's Dad (sorry I don't know you're name!), Jamie, Sabrina, Austin, Alex and Justin for being our "Special Elves".

Thank you to the Flyin' Blind Blues Band...Everyone LOVED you! Thank you to our rockin' DJ!!!

Michelle, Toby, Paula, Mike, and Jake, Thank you for the idea, the planning, the preparation and the friendship involved in putting this benefit together. Thank you for everything, the yelling, the laughing and the crying. You can't do that with strangers!

I will post pictures when my eyes are more open....


Wednesday, March 11, 2009

Slight change in plans...

We had to put off yesterdays upper GI and esophagram, Chase has a bit of a bug. We hope it isn't RSV again. He made it through the entire winter without even a cold after having RSV three times last year...

We took him to the pediatrician yesterday, she put him on amoxicillin (just in case) and had a home care service deliver a suction machine yesterday afternoon so we can help him keep his throat clear. He tends to bring a lot up from his lungs and then can't clear it.

We will reschedule the tests as soon as he's feeling better.

Have a great week everyone!

Thursday, March 5, 2009

Surgery Consult

Sorry, I was worn out yesterday or I would have updated sooner. We met with the surgeon in the morning and to make a long story short, next Monday Chase goes back to Children's for an upper GI and an esophagram, then some time next week he will wear a pH probe up his nose, down into his stomach for 24 hours. After we get those results surgery will be scheduled. The question at this point is whether or not to do the fundoplication. The surgeon said that because Chase is already so low tone, doing that particular procedure could put enough pressure on his lower esophagus to make swallowing impossible for him permanently. We think it can be avoided and are hoping to be able to do a Gj tube surgery soon. He also told me to stop thinking of the feeding tube as a temporary thing.

One day at a time, one test at a time....

On the 20th we have someone from the county along with an architect from UB coming to plan out the ramp for the front of the house. I'm excited to be able to roll him out easily for walks when the weather gets nice. I know the grading rules say it has to go out a foot for every inch it goes down, I have images of this thing going WAYYY out into the back yard, LOL. Or having to zig zag multiple times before we reach the cars. We'll have to leave an hour early everywhere we go just to get down the ramp, LOL...

Well, tomorrow is his 18 month check up with the pediatrician. It really seems kind of pointless...they haven't seen him since any of this exciting news, and I'm not sure they'll be all that happy to see us, LOL. I think we scare them!


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 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. 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!!!!! :*)