Who We Are and Why a Blog

Hi!  I am starting this blog to see if it will help family and friends keep updated on Claire.  We have had so many questions and requests for updates that we thought a blog might help.  Then you can choose when and how much you want to know or be updated.  I hope you like the idea.  With the new doctors here in Arkansas seemingly more aggressive and with Claire growing older, it seems there are more changes, more often.  I hope you find it helpful!!!  We are so thankful for all of the love and support you have shown to us through this journey!

As most of you know, Claire has a number of health problems which have resulted in numerous "diagnosis codes" being used to describe her condition(s).  They even ran out of lines on the military paperwork when it came to diagnoses.  However, the simpliest way to describe Claire's diagnosis today is Severe Dysphasia of Unknown Origin with Developmental Delay.  This does not begin to cover all of the little details the doctors continue to find every time we go, but overall this covers her. 
She currently has a "Mic-Key Button" feeding tube that was placed at 5 months old.  She was fed only through tube feeds from 5-9 months when pureed foods were introduced.  Also at that time, honey-thickened liquids were introduced.  Presently, she still remains on honey-thickened liquids, which she drinks through a straw (she has very little ability to drink any other way); however, her "food" diet is not restricted.  She struggles at times with chewing and with weak muscle structure; however, she undergoes therapy to work with that.  She has progressed to nearly eating everything a normal two year old would eat, as long as it is not liquid (ie soups, popsicles, etc or they must be thickened).

Claire undergoes 5 sessions of therapy weekly to work on various issues, mostly as a result of her developmental delay.  She has two sessions of physical therapy a week to work on strengthening her muscles nearly all over her body.  Her abdominal region is particularly weak, and it is likely that one hip/leg is stronger than the other.  The physical therapist is confident she will catch up quickly.
She has occupational therapy once a week to work on her sensory integration disorder.  This is a somewhat common disorder that encompasses alot of different characteristics.  Our pediatrician attributes Claire's issues to the fact she has been in the medical system since 3 weeks of age with all kinds of people prodding and all kinds of tests.  She is making great strides and hopefully we will see her become less skiddish over time.
If Claire has a biggest need for assistance it is in speech and feeding.  At evaluation, one of her speech percentiles was at less than 1% of children her age (which means 99% of children her age were farther along than she was).  She goes twice a week and works on both speech and feeding during her sessions.  The feeding is coming along nicely as is the speech.  She has added many words just in the last month, and we are so excited to see that she seems to understand that she needs to speak our language for us to understand.  She had very little issue with receptive language and that continues to be a strong point for Claire.

Overall, Claire is a happy and loving child.  We are very blessed to have her and realize her health issues are not as severe or limiting as some.  For that we are thankful!!!  
I will try to update at least once or twice a month depending on the going-ons of the month.  I will certainly update whenever we find out something new or things change.
Thanks for all the support and love!  We are blessed!!!!