This morning we had to wake Kinley up early so that we could get downtown to Children's Mercy for her OT appointment on time. It was actually really bad planning on mommy and daddy's part because we kept her up late last night for the Royals game and then got her up early this morning. I really don't know what we were thinking. Oh well, live and learn.
The reason Kinley had to see the OT at Children's Mercy was because they have the final say on whether or not to do a swallow study.
We made it to Kinley's appointment on time and soon realized that she still has a phobia of medical personnel. As soon as we wheeled her stroller into the treatment room Kinley started crying. She was not herself the whole appointment, she was really fussy and uncooperative. Whether that was from being back at the hospital, or her lack of sleep, or both I guess we won't know for sure. Kinley ate a couple of bites of graham crackers and applesauce for the OT and she took a couple of sips of water from her sippy cup, but that is all we could get her to do before she was done.
After evaluating Kinley, the OT recommended that we cancel the swallow study. Her reasoning was that Kinley will have to be able to take at least 15 swallows for the swallow study and if she is not able to do that then we basically wasted our chance since she will not be able to have another swallow study for another year. The reason she can't have another swallow study for so long is because the study involves a lot of radiation. Basically it is like having a continuous x-ray machine on her watching every swallow.
The reason we originally wanted a swallow study was to see if Kinley needs to have her liquids thickened anymore. The OT recommended that we try clinically weaning her off the thickener instead of doing the test now. To clinically wean means that Kevin and I will be in charge of watching Kinley's reaction to thinner liquids.
We had been using 1 packet of nectar thickener to 6 oz of milk and we are now going to use that same packet to 8 oz of milk so that it will be just a little thinner. Kevin and I will be watching for any signs that Kinley is not tolerating the thinner liquids such as coughing, breathing heavier during feedings, or refusing the bottle. Worst case scenario is that Kinley may get a cold or infection in her lungs from aspirating some of the liquid. (Aspiration is when liquid goes into the lungs instead of the stomach.) This is the time to clinically wean since it is summer. You would not want to clinically wean in the winter because of cold and flu season, plus it would be hard to tell if the thinner liquids caused the infection/cold or if it was just the regular common cold or flu.
We were a little hesitant about clinically weaning because we were not sure we would be able to tell if Kinley was having any problems on the thinner liquids, but we felt better that the OT at Children's Mercy thought we would be just fine. They are usually just as cautious as the special care clinic, so if they were alright with it that made us feel better. Plus, we have already been giving Kinley unthickened milk in her sippy cups and she has done just fine with that. If we can prevent Kinley from having to go through another swallow study and thin her liquids that would be awesome! I was pleasantly surprised that the OT thought clinically weaning was the best course of action for Kinley.
I was also surprised to hear the OT say that we have been "babying" Kinley too much with regard to her meals. Kevin and I have still been warming Kinley's bottles before we give them to her. I guess it was just habit to warm her bottles when feeding her fortified breastmilk and we just carried that through when we switched to formula and most recently to whole milk. We have also been making sure that all the food on Kinley's highchair tray is bite size for her. The OT said we should start giving Kinley her bottles cooler and giving her bigger pieces of food so she has to work to make them bite size for her. It was very refreshing to be at Children's Mercy and hear that we should forgo the swallow study in favor of clinically weaning and push Kinley a little harder at mealtimes even if it meant that her intake may decrease a little initially.
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Glad you guys had a good OT visit. We are still thickening Sofie's milk and pediasure in the bottle and warming it as well, because she just takes it so much better that way. However we never thicken or warm her liquids in her sippy cup. We've tried to stop thickening her bottles, but she doesn't eat as much. I think she had to work harder to organize her swallow and it tires her out quicker. We currently thicken her pediasure 8 oz. with the equivalent of one packet of nectar and 8 oz. of milk with 1 1/2 packets. We're still working toward getting rid of the thickener all together in her bottles. Good luck!
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