Saturday, November 15, 2014

Our week of medical appointments

 Thursday was ONE MONTH since GOTCHA DAY!!
(In many ways it feels like he has been our son FOREVER! He so perfectly fits in our family!)

We are soooo incredibly BLESSED to call Bryan our son!!

He is sweet, cute, curious, playful....and now even cuddly!!

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What an amazingly wonderful, overwhelming, and exhausting week!

A week of medical appointments sure takes A LOT of energy!


Monday was Bryan's orthotics appointment.


They made molds of Bryan's feet/lower legs to custom make AFO's (Ankle Foot Orthotics).
(Who knew they were custom made?!)


It was actually quite a neat process....but Bryan got scared and shed a few very sad tears :(

Tuesday we met with the neurologist at Mott Children's Hospital.
-we provided all the history we knew (not much)
-the doctor observed and assessed Bryan
-we got A LOT of questions answered
-next up an MRI (under general anes.) to rule out spine issues (she doesn't expect any)
-heart and lung (as they are both muscles) will probably be evaluated after the MRI
-the doctors are starting to rule out a few things....
....but also suggesting a diagnosis which may be degenerative :(
-we are HAPPY that Bryan is receiving GREAT care
-we are SAD thinking about what the future may hold for our boy
-we are putting our FAITH in JESUS CHRIST - the great HEALER and our COMFORTER!!!


Wednesday Bryan had a Physical Therapy evaluation.

Our goals - to have Bryan walk with a gait trainer and then walk independently!

We already have an appointment set up with the an equipment person on the 25th. They will measure and fit Bryan for a gait trainer (walker) 

Thursday Bryan had an Occupational Therapy evaluation.

The GOOD news is he only needs 3 or 4 OT visits as he is doing REALLY well!!

His biggest issue seems to be his extremely double jointed elbows. They want us to use a special fabric tape on the inside of his elbows that won't allow his elbows to over bend (my words). I tried wearing some of the tape - lets just say it was annoying!

We will start weekly PT and OT appointments on Tuesday!

GRIEVING/CRYING update: 
THANK YOU so very, very much for your PRAYERS! 
Bryan has continued to WAKE up HAPPY and FALL asleep HAPPY!! YAY!!
He also continues to grieve once a day....so very, very sad BUT he continues to seek my comfort and accept my comfort!! 
(and we actually had ONE day this week he didn't cry!!)

This week Bryan has wanted me to CARRY him A LOT!!

YAY!

AND he has wanted to SIT on my lap A LOT!!

YAY!

Our son is turning into a SNUGGLY boy!!

I just messaged this to a friend:
I have fallen head over heels in LOVE with Bryan Jinhua!!! He is a SWEETHEART!!! I can't tell you what a perfect fit he is for our family!! We are sooo incredibly blessed. I just LOVE his little arms around my neck and his sweet little smile Whatever the road ahead - I am soooo OVERJOYED that we are on that road together!! And I mean that!

Blessings, Sandy

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