Thinner Liquids???

Since I have not updated the blog in forever many of you may not be aware of the newest developments in Claire's medical situation.  Back in November Claire had the latest of her endoscopies.  This is what resulted in the diagnosis, etc. as stated on the blog.  Then Claire's baby brother was born a week earlier than planned and blog enteries went to a stand still.  I apologize for that.  Here is what has happened over the last few months.
In December, Claire went to see the ENT Dr. Richter and had a swallow study.  The swallow study did show some aspiration (fluid into her lungs) at a nectar consistency.  However, Dr. Richter did not feel this was a huge issue at this time.  He feels much of this is because Claire's muscles do not have "practice" or the "know how" to swallow correctly.  So he has written a protocol which he uses with "swallowing kids" like Claire to teach their muscles how to swallow and return them to drinking a liquid consistency.  So, Claire has been drinking a bit thinner liquid, "thin honey" if you will.  We will thicken with the honey consistency thickener so she is by no means drinking a thin liquid, but it is thinner that what she has ever had in the past (since the tube placement).  She has tolerated this well with no issues.  That is thrilling for us!!  If she continues with no complications the hope is to have her on normal liquid consistency in the next year to year and a half.  We shall see how that goes.....we remain very hopeful!!
She was also taken off all feedings through her G-tube/button.  We only use it for medications or if she is sick and cannot take in enough fluid.  Some of her numerous medications were discontinued, which is always a wonderful thing!!

Claire also saw the allergist at the beginning of February.  After testing for 33 different allergies, it was determined she was not allergic to any of them.  Overall, the allergist does not feel she is allergic to foods although he cannot rule it out completly.  He did not know the cause of her very red cheeks but felt we could work it up further with a dermatologist if we desired.  Per the pediatrician and our wishes we are not pursuing that as we feel Claire as spent far too much time in doctors offices for medical issues.  Red cheeks are not a huge issues and not something life threatening.  We will see what happens with time.

We also saw the GI doctor in February.  Nothing much to report from there as Claire is so stable he does not feel he needs to see her for at least 8 months.  Mostly we are on a holding pattern as we wait to see what happens with her swallowing condition and her acalasia. 

All in all, life is going well for Claire!!  We can see a bit of light at the end of the tunnel.  Claire is a happy littel girl who can light up a room.  She doesn't let her tube stop her at all.  In fact, she helps us by opening it when she gets medicine and even can give herself the medicine by pushing in the syringe.  She definitely is starting to realize she cannot drink what others can, and this is very frustrating to her.  It is hard, but we push through it and try to distract her.  We all look forward to the day when she can go to Chick-fil-A and order a happy meal and drink the provided juice/milk.  Until that day, we wait and hope......