Sunday, December 21, 2014

This week:



Bryan decorated Christmas cookies.

What a BLESSING to be a part of all these "FIRSTS"!!


Bryan went to PT...


and OT.


Who says OT has to be ALL hard work?!


         Bryan had an ultrasound on his bladder and kidneys.
        
 
He wasn't so sure about all the goop, but laid still and didn't cry!

We are still waiting to hear the results.

 
We also had Bryan's AFO's adjusted. The adjustments seem to be working - YAY!

We are working our way toward wearing the AFO's full time. 

Bryan seems to be getting used to his AFO's
(Although he still isn't interested in pushing his shopping cart around while wearing them)

I am getting used to his AFO's
(And can usually get them on the first try)

Six out of the ten of us got a TERRIBLE stomach virus this week :(

I was most worried about Darren (and his repaired heart) and Bryan (being home only two months) getting sick. I didn't want Darren to end up in the hospital. I wondered how I would explain to Bryan what was happening to him and hoped I could comfort him.

I worried that both of them would have bad aim and miss the bucket!

THANKFULLY both boys are still healthy! PRAYING it continues!

We are looking forward to CELEBRATING Bryan's first CHRISTMAS in just a few days!!

Blessings, Sandy

Sunday, December 14, 2014

Bath fun!

Bryan *loves* taking a bath!


A bubble bath is a BONUS!


And having a big brother join in the fun - even better!


Lots of giggling!


And LOTS of splashing!


This week during PT Bryan tried out a gait trainer (walker). 

At the orphanage he used a walker that was pushed IN FRONT of him. This gait trainer and the gait trainer that has been ordered for him go BEHIND him. 

Let's just say Bryan wasn't so sure about it. 
Apparently it seems wrong to have it behind him and not in front! Hopefully with time he will learn how to move it along - he was moving *faster* than the walker! (His walker with have some sort of friction built in so that doesn't happen)


During OT Bryan made a couple of ornaments!

It was really sooo sweet to see him working on the crafts!!

The OT had him sitting on a ball WITH special white shorts on (I know they look like a diaper in the picture!). The shorts have the legs sown together - so Bryan had to use his core to balance on the ball and not spread his legs to balance - pretty sneaky of her huh?!

GRIEVING UPDATE:
Bryan hasn't cried his so.very.sad - break.your.heart grieving cry in over a week!!
(Although he has cried the "I want that toy" cry and the "I am scared of the dark and don't want to ride in the van when it is dark" cry)

PRAISING GOD that our son is adjusting to his new life!!!

Bryan had his urology appointment this week. 
They have scheduled him for an ultrasound next week to get a look at his bladder, kidneys, and other inside parts. I have a Mandarin interpreter scheduled to be at the appointment. Hopefully he/she will be able to help me keep Bryan from getting scared and hold still :)

Blessings, Sandy

Sunday, December 7, 2014

AFO's


Who knew fitting AFO's that were made from a cast of YOUR OWN FEET/LEGS would take so long?!

Good thing we brought Legos!


And we took FUN selfies to pass the time!


TWO HOURS later we had fitted AFO's!

Bryan is supposed to wear them 3x a day for 30 minutes each time. 
(Apparently you have to build up a tolerance to wearing them. You have to be careful not to get sore spots/blisters.) In time he will wear them all his waking hours.

Bryan doesn't like them...but tolerates them. 

And truth be told....I don't like them either. 
I don't like that I have to force him to wear them.  I don't like that they can cause his feet to be sore. My number one "I don't like" - that they make it harder for him to walk now. In the end I know they will help him - but for now it is hard...it is hard to watch him struggle :(

Yesterday - shoes that actually fit around these crazy, wide AFO's arrived in the mail - that helps a lot! Today -  socks long enough to fold over the top of the AFO's arrived in the mail - they should help too. 

(Don't ask me how many stores I called and visited trying to find shoes and socks!!)

I am praying Bryan gets used to wearing the AFO's. It has to be hard for him. He has walked on the sides of his feet for 4 years. He is having to learn a new way to walk AND find a new center of balance....praying that happens soon!


Bryan at his weekly PT appointment.

He was supposed to stand up - remove the car that was taped to the mirror - and bend his legs as he sat back down. Bryan locks his knees and tends not to bend them - so this activity is supposed to help with that.


THEN Bryan got to RIDE A TRICYCLE!!!

WOO HOO!!! It was definitely a DREAM COME TRUE for him!!!

You could just see him thinking 
"I am getting to ride a bike like my BIG brothers and sisters!"

I was soooo PROUD of him and amazed that with the help of the handle on the back and velcro on the pedals BRYAN COULD RIDE A BIKE!! 

Any guess what Bryan might be getting for Christmas?!


 This week the kids decorated gingerbread houses


Bryan worked really hard on his house - look at that concentration!


 I didn't know what to expect. 

Although he is 4 years old....he acts more like a young 3 year old.

I didn't know if he could do this activity or how much help he would need.

Bryan's fine motor skills are really good. 
(He will only need a couple of more OT appointments.) 


 I spread the frosting and he placed all the candies. 

And he did a REALLY good job!

 Soooo FUN that Bryan could join "the big kids" for our yearly gingerbread house decorating!

I *love* making memories with Bryan included! 

Blessings, Sandy

Sunday, November 30, 2014

Running!


Bryan had PT this week. Although he doesn't like his hands sticky and dirty (my kind of kid!!) - he tolerated the shaving cream activity. (The OT was out sick so no OT this week) 


During PT Bryan was measured for a gait trainer. It is a Ottobock Nurmi Neo and will look pretty similar to the one above (not sure if those are the same handles). The seat  will fold up when he isn't using it. He did pick GREEN! 

The walker actually goes behind him....so if he is standing with it - the basket will be at his back.


 It will take a few months for Bryan to get his gait trainer. Apparently it takes insurance FOREVER to process the paperwork and issue approvals. 

In the meantime we have a "temporary" walker - a kids shopping cart with a weight in it so it won't tip over. 


 Bryan walked in circles for an AMAZINGLY long time after we dusted off this toy from the basement. He walked through the kitchen - family room - computer room - school room...and around and around again :)


I wish that you could have been at our house!!!

Darren and Jason were running around in circles....with Bryan crawling and trying his best to keep up. Erik offered to carry Bryan and run too! 

O-BOY-O-BOY was Bryan over.the.top EXCITED!!!

He was ALL smiles! He was pumping his fists and just squealing with HAPPINESS!!!


THE JOY on his face - was just WONDERFUL to watch!!

Can you imagine never before being able to run and keep up with the other kids?! And now YOUR DADDY is carrying you and making that possible!!!

My mama heart was BURSTING with happiness for my boy!


Someone got a hold of my phone and learned how to take a selfie :)

Tomorrow Bryan gets his AFO's (ankle foot orthotics). 
Please pray that they don't cause him pain and he can adjust (and LIKE) wearing them. He currently walks on the side of his feet. His feet are frequently turned to a 45 degree angle from his legs. We PRAY and HOPE these braces will help Bryan to reach his full walking potential.

UPDATE:
After reading this post a friend shared:
"I was thinking about daddy running with Bryan and carrying him...so much of what our heavenly father does for us... carries us thru our struggles and gives us joy in the journey!"

Blessings, Sandy

Saturday, November 22, 2014

Our week

TODAY is *one month* since we (Rhiana, Bryan, and I) arrived back home!!

How is THAT possible! The time has flown!!


Bryan enjoyed his OT and PT appointments this week.

Who wouldn't when you get to slide cars down a slide, play with Mr. Potato Head, swing, climb, play with balls, bounce....


Bryan spent some time hanging out in my backpack. 

He even brought along a toy :) Thankfully the back of my head didn't suffer damage :)


Bryan and I made a run to the Chinese grocery store for "comfort food"!


We saw a tank FULL of frogs....um - no thank you :)


And lots, and lots of other tasty foods.

I just LOVE looking around the store - soaking in my China memories. The smells, the sounds, the food - good for both Bryan and I.


Bryan discovered this week that he LOVES sledding!!

Lots and LOTS of giggling!


Today my sister asked me for prayer requests -

I told her:

-my prayer is that whatever Bryan has (disease, condition) it isn't degenerative

-my prayer is that Bryan continues to grieve less and less (he didn't cry yesterday...or so far today!)
(I heard from a fellow adoptive mom this week that her daughter grieved for a whole year - so instead of thinking days and weeks I am thinking it could be longer)

....but we are committed to COMFORT and LOVE Bryan as long as he needs to grieve and process this HUGE life changing/transition - because he is OUR SON - forever and EVER!

Amazing how much I LOVE this little guy already!!

Up Coming Events:
Weekly OT and PT
Dec. 1 - receive AFO's
Dec. 5 - Pediatrian Appt. 
Dec. 10 - Urology appt.
Dec. 30 - MRI
Jan. 16 - joint appt. with Rehab. Doctor and Neurologist

Blessings, Sandy

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!!

------

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

Saturday, November 8, 2014

Snow and an update!

 
 Early this morning it snowed!


HUGE flakes!


So we HAD to get outside so our Southern China - never having seen snow before - boy could SEE the snow UP CLOSE - even in his pajamas!

He seemed to like the snow! Although wasn't so sure when those BIG flakes melted on top of his head!

GRIEVING:
Bryan Jinhua has woken up everyday (except one) HAPPY!! woo hoo! AND he has gone to sleep every night HAPPY - no crying/screaming!! woo hoo!

Bryan continues to have one or two times a day that he just suddenly starts crying/weeping....it is so very sad BUT he also now seeks out AND accepts my comfort!! Oh - my - heart - it is WONDERFUL! Seeing Bryan grieving is still hard, but being able to provide comfort is HUGE!

LAST WEEK:
Pediatrician - mostly a base line type appointment. We didn't learn anything new. Bryan got the flu mist. We are waiting on other vaccines until we get titers drawn. We received bottles to collect poop samples.

Physical Medicine and Rehabilitation - FABULOUS doctor! He gave us referrals for PT, OT, Speech, Orthotics, Radiology, and Urology. He doesn't think Bryan Jinhua has CP, SB, a syndrome, or Ehlers Danos......but guesses it is some type of nerve/muscle issue.

Radiology - x-rays were taken of Bryan's hips, legs, and spine

Laboratory - poop samples dropped off (YUCK!)

NEXT WEEK:
Monday - Orthotics
Tuesday - Neurology
Wednesday - PT evaluation
Thursday - OT evaluation

(Nothing like jumping right in with appointments huh?!)

THANK YOU for your PRAYERS as we continue to seek a diagnosis and therapy to help Bryan Jinhua!

Blessings, Sandy