Swallow study results

Two fridays ago we headed up to Doernbecher's Children's Hospital for Madelyn's swallow study. It was a whole different experience this time around, because of Madelyn's age, and her awareness of her surroundings. The last time she had a swallow study was around this same time last year...so big difference! She was not at all o.k. with being strapped into a chair and having the equipment all around her. Once she settled in though she was o.k. and we were able to get some good results. And it turns out that Mady is still having some pretty serious aspirations while drinking thin liquids. Just about every swallow is penetrating her lungs! I couldn't believe it, and was so disappointed with myself for thinking everything was o.k. these past few months. I feel awful for flooding her lungs every time I gave her something to drink! So she is back to thickened liquids and will remain on them for at least another year.

After the study, Steve (her speech pathologist) said he is pretty sure by the looks of things that Madelyn will most likely have this as a long term issue. He believes the damage to her vocal cord and surrounding area is too severe and that she will need surgery to correct the problem. We were hoping that with time that her right side would compensate and the issue would correct itself...but Mady's is just too badly damaged. This is what is causing her swallowing disability, and this is what will most likely cause some serious speech issues. We believe that Mady will have a difficult time communicating when she reaches school age because of the weakness of her voice. Which is just one reason why sign language will become even more important for her and for us.

Surgery can be done to correct the issue of aspirating of thin liquids...but of course with surgery there comes more risk. We will eventually have to make the decision of leaving it alone, thus having her deal with this disability for long term...or having a surgery that will correct the flap that does not close when she drinks, and dealing with the risk involved with that. It will not however, correct the vocal weakness. This is something we are considering for a few years down the road. For now we will just continue thickening everything, and working on speech with her therapists.

I am thankful that we caught this before the big cold and flu season, as thickening her fluids will greatly decrease her risk for pneumonia. Her adjustment to having the thickener added again has been a little difficult for her. It's more work for her to drink, and she doesn't care much for the consistency. Now that it's been over a week, she's getting used to it, and is drinking much better.