Thursday, July 31, 2008

"Severe Speech and Language Problems

and learning disabilities are among the most common" problems associated with VCFS according to Therapy Techniques for Cleft Palate Speech and Related Disorders, by Karen J. Golding-Kushner. The author is also the Executive Director of the VCFS Education Foundation and was a speaker at the conference.

Ok, I did not know that. I did know that there were speech problems and language impairments. My interpretation of that, was I knew hypernasality and speech delays were involved. So honestly I figured "ok, not too much of a big deal!" Well that is not the case! It is a big deal! Not until I heard some of the kids talking did I really get it. Unfortunately I get it, but not enough to really explain it to you...not in a few sentences anyhow.

Some of the speech/language problems found in VCFS are: severe Hypernasality, severe articulation impairment, delayed language, dyspraxia, high pitched voice and hoarseness. What does that mean? Basically it sounds like someone is pinching your nose, and your talking without really pronouncing the consonants, and it may sound high pitched. There may also be an additional sound made, called a glottal stop which is like the sound you make in the middle when you say uh-oh. Confusing? I know!

I borrowed an example from a fellow VCFS mommy (Pam hope you don't mind) her little girl sings Minel Minel mina Nar, Ho oner wha oo are. (Thats Twinkle Twinkle Little Star).

The m-sound (lucky for ma-mas) is not affected. Some of you may have heard Angelina say (or holler) Ma-ma all the time. When she is not yelling, I really do consider it a blessing that she can say that much. Otherwise Angelina is a very quiet baby. Once in great while she'll say da when referring to Daddy, and Haaaa! for Hi. Being able to pronounce other consonants is definitely a good thing!

So not until she actually starts talking will we know if she'll require surgery. For now the right kind of speech therapy is important!

Enough info for now, but stay tuned: They said absolutely
NO SIGN LANGUAGE!

A few pics from the trip!

Monday, July 28, 2008

So what happened at the conference?

It was truly a neat experience. Some parts intrigued us, some made us sad, some went over our heads (these parts were meant more for the professionals), and some made us wonder.
Some of the topics that stuck out to me, were: speech impairments, feeding issues, and psychological problems. On the topics of speech and feeding I made sure and payed special attention. These are current issues for us, and I want to make sure we do what's best for Angelina.
Feeding: VCFS babies tend to be smaller and skinnier than most kids. Most of us think that the chubbier the baby- you know the type that we can't help but pinch their cheeks- the healthier they are. Not true for VCFS babies. Actually VCFS babies tend to be overfed!
So why does Angelina have those big pink cheeks? Well regular formula has 20 calories per ounce, we've always fed Angelina 24 calorie/ ounce formula, as prescribed by her doctors. Now she's actually on 30 calorie per ounce formula! She's suppose to take 3- 8oz servings of this a day, along with what ever she'll eat! Well, that's not really what we are doing with her. . .
I had my doubts about this to begin with. I wondered if this heavy formula (similar to Ensure or Pediasure) wasn't making her so full that she would not want to take anything else? Well after having our 1:1 with Dr. Shprintzen and having heard from other therapists at the conference we came home and changed how we were feeding Angelina. And guess what? This girl loves to eat! She actually hollers at us if we don't feed her fast enough! I almost can't eat at the same time as her, because while I'm trying to take my bite of food she already wants her next bite. We still give her the higher calorie formula, but only 1- 8oz serving, otherwise she drinks regular milk or water.
Dr. Shprintzen talked about a separate growth chart for VCFS kids. That way they won't be pushed to eat more than they can handle. Hopefully this will be accepted amongst all pediatricians. Angelina wasn't even making it on the regular growth chart for a while, now she's barely in the 5th percentile.
When we were in the airport somebody commented on how cute she was, and asked if she was about 8-9 months old? They were shocked when we said she was 16 mos! At least we know that this is really ok. Plus look at us, our kids will always be on the smaller side!
Will tell you more about Speech and Psychological issues next time!

Saturday, July 19, 2008

Up early in the morning!

Every morning we have breakfast with the experts. Which means we get to eat and pick at their brains at the same time! Well, Breakfast starts at 8 a.m. and since we are not at home, this means we are not in our pjs, but ready to go for the day...including Angelina! Normal wake up time for her is usually 9-10. So in the morning this is the look I get: Why Mommy?

Friday, July 18, 2008

Our first day....


Wow, it's been a good day! Very informative, and in a little bit we get to go to a "Motown Magic" family dinner with music and dancing. With all this new info I think we are more ready for a nap!
We actually got our first 1:1 today with Dr. Shprintzen, this was very exciting as he is the founder of the Velo-Cardio-Facial Syndrome Education Foundation, and the first to really describe the syndrome! I'll tell you more about this later, for now we have to run!

In Michigan!

Wow we are here! Yesterday was a bit of long day, but we survived! Angelina did so well on the plane, we are very proud of her! This airport out here is huge! We did so much walking just in the airport, and we must have gone up and down elevators at least 6 times in the airport alone! When we finally got to our car rental destination @ the airport, they shuttled us elsewhere, then ge got to wait for an hour in a small, badly air conditioned room, with a long line of people. Needless to say we were all hot and sticky, but
Angelina has been such a trooper, still smiling and clapping when she was happy about something! Three hours later from arriving in Detroit Michigan, we were finally in our room. Sleep was good! There's a 3 hr difference over here, so I'm up getting ready for the first day of our conference! Yeay!
Thanks again to all you who made this possible!

Wednesday, July 16, 2008

VCFS conference

Oh my goodness, tomorrow we will be in Troy, Michigan! I really can't believe we are going! Feelings are mixed about this new adventure: excited to be able to participate in a conference specific to Angelina's syndrome; edgy....I can handle all this information good or bad right? Nervous, haven't flown since before 9/11, which means I haven't traveled via plane with my children! Lets hope Angelina enjoys her plane trip!

Angelina had her hearing test yesterday. I'm not sure how I feel about the results. Her left ear has very little hearing loss. The audiologist said it wasn't something that she would need a hearing aide for, and that it was very minimal. In her right ear there is no hearing loss BUT there is a delay- huh? The message from the ear to the brain is slow. Ok, that doesn't sound good right? Still not sure what to make of it, it's troubling because well, what's causing the delay? And why only on one side? So now the recommendation is to see a neurologist. One more specialist to the list of her doctors!

On a good note, little Ms Angelina is eating so well by mouth! She is definitely a frijolera! (loves beans) Now that she doesn't get continuous tube feedings through the night, she is waking up early and hungry! We are so happy to see her eating so well! If she keeps it up, then we won't need a G-tube anymore!

Wish us luck on our trip, I will try to post from Michigan on how our trip is going! Oh, and comments are always welcome! Just click on comments!

Wednesday, July 9, 2008

A day at the Firehouse

I've been meaning to thank the Rancho Cucamonga Firehouse Association for making a donation to Project Angel Heart. Not only do they help out our community in all kinds of emergencies, but they are also generous! Thank you for thinking of us! And while we hope we don't need you any time soon...its nice to know that such wonderful people have our backs!


I also wanted to thank fireman Matt Eddie. He gave our family a wonderful tour of the firehouse. The kids LOVED it! So not only did he approach the association about a donation for us, but we had a great educational evening with him at the firehouse. Thanks Matt! Unbelievable to think we have known each other since elementary school!

Monday, July 7, 2008

Update on Angelina

As you may know Angelina has a feeding tube called a G-tube, which we feed her formula through. She has had it for a year, and we've been working with the help from Occupational therapy to get her to eat orally. Its been a slow long process, but I'm happy to say she eats quite well by mouth now. Why, you wonder did she not do so before? 3 reasons: 1. Cardiac babies tend not to be good eaters, 1 because it tires them out, and 2 because when they do heart surgery they come very close to a nerve related to eating. 2. DiGeorge babies are known to have eating difficulties. 3. Angelina use to have severe Reflux or GERD, and everytime she threw up it always flowed right out of her nose. It was horrible. So this gave her a major aversion to having liquids in her mouth.

Luckily she is doing really good with eating now. So our goal is to get her to a point where she does not need her G-tube at all. Last weekend I think she was trying to make a point by pulling it out 3 times! Not cool! Had to involve 2 other nurse friends in the process, because she was a wiggle worm, fighting us when we would try to put it back in! Twice we were able to put it back in, we finally ended up having to make a trip to Loma Linda's ER to have them just put a new one in. I think she's trying to tell us she's done with it!

Angelina's G-tube