Cleft Palate Clinic

Before I start talking about our morning adventure, I thought I would share this picture.

Let's see, we put the sheet down on the carpet so that Bella can roll around and not get dog hair all over her. Except the dogs love to lay on anything soft, so blanket, sheet, bathmat, clothing, you name it and it's theirs to lay on. Kind of defeats the purpose.
As most of you know, Bella was born with a cleft palate. We had it repaired December of 2008 when she was a little over a year old. And I believe we are supposed to continue to see the cleft palate clinic (at Children's Mercy) yearly until she is around 5 years old.

I had been dreading this appointment all week. The clinic usually takes around 4 or 5 hours long, and anyone who has had to wait around a doctors office with kids will know, that is an excruciating long period of time to keep them happy. Not to mention that this year I would be tackling the visit on my own. And to top it off, in normal Bella fashion, she was up at 4:45am this morning, so we were a little tired and crabby.

I shouldn't complain too much, she actually behaved herself quite well. She just got tired of sitting in her chair, and I needed to let her roll around for a little while.

Here's what we learned today (or already knew but more clearly defined):

Plastic Surgeon reported that her cleft repair looks good, and he doesn't need to see her again until she is 4 years old. We would only need to do a repeat surgery if her talking is nasally. And we won't know that for years.

Occupational Therapist reported that we are doing great things for Bella taking her to Children's TLC and continuing to see our home therapists weekly. They knew we had done a swallow study on Bella (That's a whole other issue I haven't even discussed on this blog yet), and acknowledged that even though they gave us the recommendation that she should be tube feed only (nothing given by mouth), she thought at the time it was the safest recommendation and understood that it most likely wasn't necessary and that maybe we should think about repeating the study. But for now we should continue to work on drinking through a straw, and getting her to chew.

Nutritionist reported that her weight of 26.4 pounds puts her at the 15%-20% mark, and with this progress they are officially not worried about her weight gain. Which also helps in proving that she eats orally just fine and is able to take in her calories. She is also such a great eater and has no problem eating from all the different food groups, now if only mom and dad would follow her example!

The Audiologist performed a hearing test, and even though we couldn't get any clear results (you have to be able to hold your head up and look in different directions as you hear things in order to pass the test), I can tell you that Bella did a hundred times better than last year. Last year she just hung her head and didn't respond to anything. This time she would pick her head up and actually turned when the ladies voice came from the side calling her name. If it was just an object making noise she did not turn. I would imagine that was because she didn't care what the noise was, and didn't want to make the huge effort to pick up and turn her head. So again if we want to get a clear picture of her hearing we have to do a brainwave test that must be done under sedation. But I am not really worried about her hearing.

The ENT (ear doctor) informed us that she still has fluid (infection) in her ears. We just can't seem to get rid of it. They are going to take another culture to see what bacteria it is, and see if we need to do a 2 week oral and ear drop antibiotic regimen to get rid of it. We are also going to go back in 2 weeks to keep our eyes on it, and make sure it is really clearing up. We also are going back to putting cotton balls in her ears when she bathes so that she won't get any liquid in her ears. And if the infection doesn't clear up in the next month, we may be scheduling a surgery to get new ear tubes put in. They now have tubes that have a new antibacterial lining on them, so that she tubes themselves can't hold on to infection.

The speech pathologist did a language and perception test (consisting of asking me different questions). We know this is Bella's lowest ability and she showed perception (knowledge based) as a 2 month old and expression (talking) as a 4 month old. The speech pathologist did say that based on the different stories I told her, she would more accurately guess that Bella is in the 6 month range for expression and perception. So we need to continue to work with the speech therapists so that Bella and the world (or even just mom and dad) can find a way to communicate with each other.

And that was the cleft palate clinic. A lot of waiting around and moving to different buildings, rooms, etc to see all the different specialists. So I guess we will be back when Bella turns 4.