Chinese proverb

"An invisible red thread connects those who are destined to meet, regardless of time, place or circumstances. The thread may stretch or tangle but will never break."
(ancient Chinese proverb)


Saturday, September 14, 2013

Audra's busy week

Because this blog is somewhat of a journal for me to reference related to "all things Audra" I have ALOT of things from this past week to write down.  However, for those of you who want to cut to the chase, scroll to the bottom for the really good stuff...recent, oh.so.adorable pictures!

For those of you who haven't scrolled down and are hanging in for the long haul...here's a recap of Audra's busy week:

Friday, Sept. 6th
Hematology appointment:
This was a follow-up from Audra's hospitalization in May when her hemoglobin dropped down to 6.7
Audra's recent lab work indicates that she most likely has iron deficiency anemia in addition to Beta Thalassemia trait.  Nothing much to do in this department except check her CBC in a few months :)
after that she had her...
GI appointment:
Her GI doctor still doesn't quite know what to think about Audra.  After being home for over 4 months and consuming plenty of high calorie/high fat American food, Audra should have gained some weight by now.  She is basically the same weight (give or take a few ounces) as she was when we brought her home.  Her height is essentially the same as well.  So, she wants to do another endoscopy/colonoscopy, maybe this month...maybe next.  She continues to review Audra's case with her colleagues to see if anyone else can come up with something.  We came home with another set of containers for "samples" that needed to be collected.  These will tell us if her body has trouble absorbing the nutrients from the food she eats.

Monday, Sept. 9th
Audiology appointment:
Audra went back to the same audiologist for more extensive hearing tests.  She had an otoacoustic emissions test which showed exactly what the audiologist expected...impaired function of her middle ear on both sides.  She tried again to use the bone oscillator for part of the hearing test and it really startled Audra!  She feels very confident that Audra hears very little (if anything) from her right ear.  And the left ear has moderate hearing loss.  She would like to fit Audra with a hearing aid for her left ear soon.  As far as the right ear goes...it would not be helpful to use a hearing aid because her hearing loss is too profound.  The ENT surgeon has been in touch with us and he has decided that an MRI of Audra's temporal bones is needed.  Once he has the results of that he can move forward with surgically repairing her perforated left eardrum (and anything else that needs fixing!) and also decide how to best aid her hearing.  No one had mentioned this to me, but I am assuming that he will then be able to determine if a cochlear implant is an option for Audra.

Wednesday, Sept. 11th
Pediatrician appointment (well check):  Yes, this was actually the first of Audra's many, many visits to the pediatrician where she was really, truly well!  So, lucky Audra was finally able to receive the catch up vaccines she needed...4 total!  And she did great!  Her pediatrician, though...I'm not so sure...she said Audra's medical record gives her a headache!  Audra definitely makes sure she earns her money :)

Thursday, Sept. 12th
Developmental evaluation with the Intermediate Unit:
I was very happy to hear how optimistic the therapists were about Audra's potential.  They feel that she is VERY teachable!!  Yes, she has AOT to learn...but, most likely, she has never had the opportunity to learn, never been taught.  They were able to see how social and engaged she is and they know that that will be a benefit to her.  Right now, her biggest set back is her ability to hear.  Once we can improve her hearing they think she will "take off" in her developmental progress.  They were able to share with me that Audra will receive a special instruction teacher, speech therapy, occupational therapy and hearing therapy.  We still need to have the IEP meeting where all the specifics will be determined.  But overall, I was sooo happy at the end of her evaluation. 

What's up next week?
Wednesday:  MRI
Thursday:  Immunology appointment

Stay tuned...

For those of your who read all the way to this point....thanks for hearing me out!

And now the important stuff...

 
 
 
  

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