Sunday, October 25, 2009


Vinny is going to be evaluated at our local Pediatric Feeding Disorders Program this Friday. This is off a recommendation of his GI doc. A fellow CdLS friend had her daughter successfully go through this program, so I thought we will give it a shot and see what comes out of the evaluation.

Vinny has been eating fairly well, but I can definitely tell he does have some sensitivities to some foods. He has some up days and down days with eating, and is not eating enough to sustain him without the tube feedings.

The feeding program sent me a huge packet to fill out before we go to the clinic, from medical history to a three day food log....

Last night as I was filling out the information, I came across one question that I was not able to answer...

It said "Check one that describes your child's mental abilities"

Normal intelligence

Mild MR

Moderate MR

Severe MR

Profound MR

I sat there for a few moments just looking at the letters "MR"...

Yes I know my child is mentally challenged, but I have NEVER been asked to label him as such. I know he is not of "normal intelligence", but I really don't know how to classify him.

Vinny and I are just 15 months new to this whole "special needs", "CdLS", "challenged" situation...

I am finally feeling at peace with my new life with my little Vinny...

I guess I am just not ready to "label" him yet...


  1. Good luck at your evaluation! I don't know how many of those intakes I have filled out! They take forever! Is this an outpatient program, is it once a week or every day? We haven't considered something like this although we occasionally go to the feeding clinic.

    As for the MR question, #1, imo, they should be using different terms by now and #2, Vinny is too young to be classified yet anyhow. Scratch it out and put developmental delays. My three cents!

    And HE looks GREAT in green!! Nice photo!

  2. I'm with Heidi - it's too early to be able to accurately classify Vinny (even if you really wanted to). Sometimes those questionaires include questions for older patients where the Dr. might need to know that the patient can't accurately understand or communicate what's going on.

    Anna wasn't diagnosed with CdLS until 22 months of age. Even then, her delays were still close to the range of "normal" for when kids start sitting, rolling over, walking and talking. It was too soon to be able to classify her "mental abilities" as compared to other kids.

    Hope you get some answers and encouragement for the feeding issues.

  3. I guess I just don't understand the whole "LABEL" thing! To me Vinny is just like any other kid... he laughs, he crys, he eats and he loves to play...what can be more "normal" than that!!! That's just a grandmas opinion.. Love you guys

  4. Oh Staci - I know how it is to plug away and things are going great and your child with CdLS is doing great and then one little thing or one word or something happens and it just brings you down again. Each day brings new joys and triumphs but unfortunately there are sorrows thrown in there too. Our kiddos are who they are regardless of their level of mental capabilities. And that's what we are happy with - no label applied. Hang tough Staci - we are the voices for our children. (((hugs)))) to sweet, sweet Vinny!

    P.S. Good luck at the feeding clinic Vinny! I know you will show them all a thing or two!

  5. the only label i would give Vinny is "loved and beautiful", i'l be saying a prayer for you guys.... you look radiant with your beautiful boy

  6. Hi Staci!
    Just wanted you to know I still check in on you guys. Looks like you are having a fun fall :o) I loved the video you posted and shared it with a friend who also thought it was beautiful.
    Take care,
    Nurse Amanda from The Nebraska Medical Center

  7. I totally understand. It's hard when stuff like that hits you and you're forced to label things that you shouldn't even have to label. Since Hope started school this fall, I've had to talk to her therapists about a possible wheelchair (for next year possibly) and the type of preschool she'll go to next year (for severely multiply impaired kids). That was a tough label to hear. I'm not ready for that yet. She's only 2!

    Anyhow, just wanted you to know I totally understand. And I agree with Heidi too: Vinny is too young to be labeled anything cognitively. I was told Hope won't be tested until she's at least two and even then the results can be misleading because they're so young.

    Good luck with the evaluation!

  8. I label him "adorable"... every pic of Vinny makes me smile. His amazing eyelashes, thick beautiful hair... too too cute!