Friday, December 7, 2012

We Have a New Therapist!

I can do it!
At the end of October, Rae went to the local children's hospital to have a modified barium swallow test done. We were always aware that she has some difficulty eating, but not anything severe so we didn't worry too much. However, after a visit to a pulmonary specialist (another section for the "Big Book of Boo-Boo's), who ruled out asthma for her constant coughing, she suggested the swallow test to check for reflux. Instead of finding reflux, we found out that Rae has been aspirating liquids. The liquids are seeping into her lungs which gives germs/bacteria something to eat, which in turn causes infection and can cause pneumonia (whee!). what?

All her liquids must be thickened with either rice cereal or a thickening product (one we tried was called "Thick It" and it continued to thicken over time turning milk products into sludge...ick!). Apparently, the new rage is a gel thickener, but it's more expensive. There are different levels of thickening and Rae needs to have her fluids thickened to "nectar" consistency, which is the lowest, the next being "honey" and the thickest being "pudding" (might as well just eat your liquids with a spoon). I'm very thankful we did not have to go any higher on the viscosity scale because that means we're much closer to our goal... No more thickener!

Ok...trying to make a long story short.

Rae's tongue came out to touch
the Nuk brush!
They also recommended we see a speech therapist for feeding therapy. I called Dr. A, requested a referral to the local children's rehab, and managed to get our first appointment scheduled for the same morning we were leaving for Atlanta (whole other story). I wanted to get the ball rolling and knew the first appointment would be more of an assessment. After our first meeting, I walked away with almost two months worth of appointments scheduled every Tuesday and Thursday (now we're up to 4 therapy sessions a week).

This week we had our first official appointments with Ms. Nichole (she's kind of funny). Already, Rae has surprised Ms. Nichole with the variety of foods and textures she's able (and willing) to eat. It was also a great relief to her that Rae isn't scared of new people so we don't have to have an adjustment (getting to know you) period. Rae isn't the only one learning...I've also learned a few things too! When Rae throws her head back durning meals, she is trying to move food around in her mouth (I thought she was just being silly). I'm looking forward to working with her and with Rae over the next few months and hope the feeding therapy will help resolve the aspiration problem and maybe a few other issues (tongue lateralization...side to side movement).

1 comment:

  1. Hang in there girl. I know all the therapy can drive you crazy. I've got two special needs kiddos with 5 therapies a week plus 4 days of preschool. It can drive you batty but I know you know it is totally worth it.