No Food Yet!!

This morning I took Jordan in to Mary Free Bed for a videofluroscopy (video swallow study) and Oral Motor Evaluation. I met Rose and we talked briefly about Jordan's history and her current oral experiences. Since she doesn't eat anything by mouth her only exposure is through toys, pacifiers, and anything she picks up off the ground and puts in her mouth!! I explained that they had recommended that we allow her to pleasure feed for 2-3 bites for 3 meals a day of honey/pudding thick Pediasure but she cried when we took the food away so I stopped doing that after only a few days for fear of creating a food aversion.

We then went and began the videofluroscopy. We started with a couple of bites of honey/pudding thick Pediasure. the first few bites went okay but on her 4th bite she aspirated quite a bit. We moved on to pudding thick chocolate pudding (which is actually thicker than pudding normally comes) and after a few bites of doing okay, she again aspirated. The radiologist cut off the swallow study at that point and we went into a room to discuss it.

Rose explained that she does not feel that Jordan is ready for oral foods. She has a tendency to let food slip down her throat rather than gather it at the back of her tongue and swallow. She does swallow okay (not good, just okay) but sometimes there is some slight nasal aspiration (it goes up into her nasal passages) and it often doesn't go down completely in one swallow. The most difficult problem we are facing at this time is the fact that the food is not going completely into her stomach. It goes most of the way down and then kinda creaps up. This is not considered reflux because it never makes it to her stomach.

The concerns at this point are that she doesn't seem to be affected by food sitting at the back of her throat, aspirating food without coughing or any attempt to clear it from her lungs, and food not going completely to her stomach when she swallows. The first 2 are controlled by voluntarily means - she needs to learn to hold the food in her mouth before swallowing and to cough if it gets into her esophogus. However, once you swallow food, it is involuntary muscles that control it's passage into your stomach. Rose is concerned that Jordan has some neurological problems causing her to not know to move that food the rest of the way down to her stomach. These difficulties may never be resolved through therapy. Rose felt confident that Jordan would eat at some point but feels that it might be a while.

She recommended that we pursue a "boot camp" of speech and oral motor therapy that does not include feeding to try to make her more aware of and develop her oral skills. She is recommending 8 weeks of therapy 2 times a week. After that we will have several months of continuing that therapy at home and they will re-evaluate her at that time with another swallow study.

I hadn't really prepared myself for this result. I kinda expected to go in and see that she still has some difficulty swallowing and move into therapy to work on teaching her to swallow properly. I am working on processing it all and coming to an understanding of how severe Jordan's situation is. I am once again relying on God to provide me the strength to keep pressing on. I love this little girl with all my heart and I know that she is soooo strong. She makes me stronger every day by the things she teaches me. I am amazed at how much I still have to learn!