Tuesday, March 31, 2009


I finally have an update for Vinny! We got good news from his GI doctor last week saying that it is not recommended for Vinny to have a Fundal Placation. The surgen said at this point Vinny is to small. If he is still having reflux issues in six months, they would then re-evaluate him.

So with that being said, we were able to schedule his belly tube placement for April 9th! That is alot sooner that I had thought. I am excited to finally have a date set, but scared at the same time hoping that nothing will go wrong! The GI doc said that he will admit Vinny to the hospital for 2-3 days following the tube placement.

I took Vin in for a weight check last week and thought I would have his doc check him out because he woke up with some congestion. Well little did I know he had a RAGING ear infection! Poor little guy. He showed no outward signs of this- grouchiness, fevers, etc... I am coming to find out from other mom's that our little CdLS guys have a high pain tolerance. The doc put him on a round of Amoxicillian to take care of his ears.

This is the FIRST ear infection that he has had! I am so proud of him, as my other boys have all had numerous infections and had ear tubes by 9 months of age.

Vinny had an ABR hearing test done on Monday. It came back showing mild to moderate hearing loss in both ears. As well as fluid in both ears. The audiologist wants to retest Vinny in 3 months in a behaviorial sound booth.


Loudness Example- Quiet/whispered speech, clicking fingers


Loudness Example-Quiet/normal conversational speech

Possible challenges and needs for Vinny: He may have difficulty hearing quiet voices. He should understand normal speech spoken from the front and up close. Will benefit from "hearing instruments".

After the test he was fitted for hearing aides. It will take a little while for the molds to be made and the instruments ordered. The audiologist did say that Medicaid would pay for them!! Yipee!

Oh ya Medicaid!!! We also found out last week that Vinny is appropriate for the "Aged and Disability Waiver". By qualifying for this waiver, he will automatically get Medicaid! I am so so happy! Medicaid should pay for all medical bills that our insurance doesn't cover. What a relief! I tell you....those medical bills sure add up. Vinny doesn't even have as many medical bills as some of the other CdLS babies that we know.

So as you can see we have finally gotten some (good) answers to the questions we have had and have been waiting for. Please pray for Vinny to do well during his surgery on April 9th!!


  1. you did get some very good answers to your questions!

    Mason is the same way with ear infection. he once had one so bad (without outward symptoms) he ended up having a siezure from fever). so now, if he feels warm to me, i take his temperature (usually once a day LOL)... and if it is above 99.9 degrees, I start with the tylenol and call the Dr. so far, he hasn't had another siezure, but with our little ones, you can never be too careful considering their high pain tolerance.

    love the picture of him. and glad that everything is coming together!

  2. I know very well how those bills add up. It took us several months to get our medicaid and family members were shocked at how much we paid out of pocket even though we have regular insurance.