Thursday, June 7, 2007

Natalie update

A couple long-distance friends asked how Natalie is doing, so I thought I'd give an update on her progress.

First of all, Natalie is a very happy child! Most of you know that she was born with Rubinstein-Taybi Syndrome, which, among other things, causes developmental delay. At 18 months, Natalie is about 50% delayed physically. She is close to crawling and is close to pulling herself up in certain circumstances (about the physical development of a 9 month old).

In the past few months, Natalie has started to make a few more sounds, and yesterday she said "ma" for the first time in almost a year. Last year she was making "ma" and "ba" sounds, but then she stopped those sounds, we think because of poor hearing. She got ear tubes in December and immediately started making more sounds, but she is not talking yet. We pray that she will speak.

Because she aspirated milk, she got a g-tube at four months and was fed exclusively by g-tube until she started e-stim swallowing therapy at 9 months. She's been doing e-stim for about 9 months. The latest swallow study showed that she still has trace aspiration of thin liquids (like water), but is safe on liquids thickened to a nectar consistency, so we add a thickener to any milk we give her by mouth. She loves to eat solid foods by mouth. We still use the g-tube to give her liquids, but most of her calories are now by mouth. The improvement she's made in eating is really remarkable, and her therapists who aren't familiar with e-stim have been very impressed. Natalie had reflux during her first year, but has outgrown that. She will probably have constipation all her life.

The other benefit of the e-stim therapy is that she's able to swallow her own saliva a lot better, so her lungs are much more healthy, and when she does get sick, she recovers much more quickly than she did before e-stim.

I forgot to report her stats at her 18 month check up: she's 21 pounds 10 ounces and 29 3/4 inches long. I think these stats moved her from the 5th percentile to the 10th percentile for typical kids, but she's about the 50th percentile for the syndrome.

Natalie is quite nearsighted: we're expecting glasses to arrive in a few weeks and hope that will help her be motivated to move into the world she sees beyond a few feet in front of her.

Other than g-tube, nearsightedness and constipation, Natalie doesn't have any other health problems (that we know of) that are common with the syndrome. She does see a lot of specialists to make sure little problems don't turn big: pulmonologist, cardiologist, gastroenterologist, ENT and opthalmologist.

Natalie gets 2 hours of physical therapy a week, 1.5 hours of occupational therapy a week and 2 hours of e-stim therapy a week.

I mentioned to someone this week that she is delayed in almost every area except socially. She loves to look at people and say hi (in her own way) to people she hasn't seen in a while. She smiles a lot and is not very demanding (for now). She is a very happy one.

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