It Has A Name.....

So the verdict is in, well sort of.  :)   As is common with Claire and her situation, the scope answered some questions, yet the doctor still wants more information before he makes a definitive decision on whether to do surgery or not. 
The muscle above Claire's esophagus was contracted again (hence the above diagnosis) but not as contracted as previously.  The muscle was dilated again and the hope is that it will stay in place long enough for the swallow study to take place (and that Claire will cooperate for said swallow study) and he can make a decision on the surgery.  We have a swallow study and follow-up appointment scheduled for December, and he would like to see that information and move forward from there.  While I hate the waiting, this is okay as I don't think we would have been doing surgery in the near future anyway secondary to Baby Durham's approaching arrival.
The BIG news from this: we have a name for what Claire has:  Cricopharyngeal Achalasia.  She retains her diagnoses of dysphagia and developmental delay; however, this "new" diagnosis could explain her dysphagia and other recurrent symptoms.  It would be very nice if this was the case.  This condition is extremely rare in children and is often looked for only after everything else has been eliminated as causes or reasons for the swallowing problems.  It is apparently even more rare that surgery is needed, but it seems more likely than not we will be headed that way.  Again, hard to tell at this point.  The doctor here gave a very good explanation as to why the other doctors had not found this, which helped Jonathan and I to better understand the situation and how this is only now being considered as the "problem".  We are very thankful we have found a doctor who is able to help Claire and may finally put an end to her "suffering". 
The doctor also looked at Claire's airway.  The inflammation, redness, etc was still there.  As of now, Claire's airway is functional, which is a good thing.  However, the reason for the inflammation needs to be determined.  He still feels it is allergies and plans to send us to an allergist for further workup.  He referred to Claire as a "special situation/case" with the words "as you know".
That is the thing I take most from this situation.  We may not get answers quickly or as often as we want.  She is just too rare.  It is hard to imagine in this day and age of medicine, but we got the "rare" disease.  Guess someone has to have it.
Claire continues to be a happy and loving child.  She remains skiddish and sensitive but that may be her nature her whole life.  Kids in the medical system for long periods, especially at young ages, often develop those personality traits.  She is picking up more words every day and is more adventerous at therapy these days.  She actually looks forward to school and therapy and more often than not goes readily to her activities without crying for mom or dad. 
Not to be left out, Maggie continues to amaze us each day.  She loves school and dance and is very protective of her little sister.  She says she is looking forward to a little brother we shall see..... 
Thanks for all the thoughts and prayers and well wishes!  I will try to post if something exciting happens.  Otherwise, we will be getting ready for the arrival of baby Durham in early December and the swallow study/follow-up visit.

The Night Before a Procedure

Well, Claire will go to the hospital for another "scope" tomorrow.  It will be her 8th time under anethesia (don't think I forgot one...).  This should be a relatively fast procedure.  She should be in and out.  I imagine we spend more time waiting for the procedure then she does in the procedure.  I am not sure how long they will keep us afterward as Claire is usually very cranky and difficult after anesthesia so they may keep us a bit to ensure she calms down and doesn't need oxygen or anything.  However, I envision a relatively short day.  I am not sure how I feel about all this and what I want to "happen", honestly.  On one hand, finally finding something that is fixable would be nice, especially if it fixed everything.  However, that would mean a surgery that I am not sure I am ready for.  So, I will just wait and see what is found or not found.  The waiting is always so hard....that and not being able to feed a 2 year old any food until after the procedure.  :)
Thanks for all the thoughts!!!  I will update on the blog as soon as I can. 
Good night!!!