Emma was given a small amount of liquid to drink that contained barium. While she drank it she was sat in front of an x-ray video machine which showed the path of the barium from the cup and down her throat.
The purpose of the study was to see if the liquid, and therefore any other substance she ingests, took the path to her belly or if it went into her lungs. The latter was possible because cranial nerves are involved in the swallowing process and Moebius Syndrome is a disorder of cranial nerves.
The good news is that of the small amounts they gave her nothing went in to her lungs. However the process of her swallow is different than a child her age.
Firstly Emma has microagnathia (small lower jaw), a very small tongue which does not come out much past her lips, a high pallette (roof of the mouth), and she is unable to close her lips. If you watch yourself eat you'll see you close your mouth (I hope!) to create a seal while the tongue pushes the food back across the roof of your mouth. Not so easy when the parts are not the optimum size.
Then, once food gets to the back of your mouth/tongue it triggers a swallow (cranial nerves carry that message from the brain). Emma does not swallow at this point, she swallows when the food is further down her throat. So, if we put too much in her mouth when she does swallow there is too much to handle and it could leak into her airway by mistake. Also it took her 3 swallows to clear just a small amount of liquid.
This means she needs to eat in very small doses and swallow several times between spoons. In reality this could mean several minutes between spoons as Emma does not swallow very often and is too young to comprehend the instruction, we think. Time and maturity will be the keys to improving her eating capability as she has to learn to eat in the same way most babies do from day one. She's just starting very late and with additional difficulties.
The speech pathologist did say that she thought it would help if Emma was able to close her lips. You can see here that her top teeth are exposed because her top lip is attached to her gums...
I had previously spoken to her plastic surgeon about a lip augmentation that would give her that ability so it is likely sometime in the future. She still wouldn't be able to move the top lip, but it would cover her teeth and the bottom lip comes up.
Both Scott and I were able to take Emma, and one of her therapists, Melissa came too. We didn't know Scott would still be off work so Melissa had planned to come. I had to stand in the hallway during the study due to the x-rays. Interestingly the staff there didn't notice my pregnant belly until I pointed it out!
Standing outside is hard because you have to hear your child scream and not be able to go to them. She settled down after the speech pathologist let Scott feed her!! D'uh!
For once I was the good guy and got the comfort hug after the bad people made her eat!! It was all over in under an hour, from check-in to leaving which was great.
Compare: Emma today...
Emma one year ago...
1 comment:
Wow look at that hair! She is so beautiful!
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