Sunday, October 4, 2015

A Bike for Bryan!

We were INCREDIBLY blessed by CSHCS Fund -

Bryan received an Adapted Bike!!!

He is soooo EXCITED that he can ride a bike like his big brothers and sisters!! 

Bryan still  needs a little push from behind - but there is a handle for that!

Can you see the special pulley system with the pedals? And the pedal straps actually keep his feet ON the pedals! 

We are so HAPPY that Bryan has another activity that HE can participate in!!

Blessings, Sandy

Thursday, September 24, 2015

Darren's Cardiology Appointment

An update on Big Brother Darren - our "original" China blessing!

Darren had another six month cardiology check up today. 

That means his heart is doing well enough to not have to see his cardiologist more often - but not well enough to move to one year check ups.

On a day to day basis Darren looks REALLY good!

Healthy, full of energy, PINK with really big muscles!

He grew almost 2 inches and gained 2 pounds since March!

Darren had an echo

The technician mentioned how it is always fun/interesting to see a heart like Darren's. She said that most hearts are normal/boring - but Darren's is very complex and makes for an interesting echo. We adopted Darren BECAUSE he had a complex heart that needed a complex repair - we are BLESSED that open heart surgery was possible - but it still makes me sad for Darren....I want him to have a boring heart.

Darren had an EKG

and then the cardiologist came in.....

Sub aortic stenosis of the left ventricle is new and was noted on the echo - so we return in six months to see if it continues to get worse. The solution involves open heart surgery....something we didn't want to hear. 

And then we asked about the "leaking" that the cardiologist was concerned about six months ago (and apparently the reason we had to come back in six months later).....and he didn't remember being concerned about leaking.....WHAT?! He did look at the echo notes from Darren's last visit - it noted some increased leaking with Darren's patch - but he didn't remember anything else. (This mama wasn't happy with the lack of remembering - WE have been WORRYING about the leaking for SIX MONTHS! - and now you don't remember it!)

Erik also mentioned about Darren needing OHS when his conduit needs to be replaced - and the cardiologist casually mentioned "Yes - he will need multiple OHS over the years" broke both our hearts to hear this comment :(

So - we continue to LOVE our boy and feel VERY blessed we are his parents!

PRAYING that God gives Darren many, many more years to be a silly, delightful, demanding boy and grow into a wonderful man!

Blessings, Sandy

Tuesday, September 1, 2015

Bryan is FIVE!

(Yes - I am LOVING our new DOUBLE sized cake pan! Now *everyone* can have seconds!! #bigfamilyprobs)

HAPPY BIRTHDAY to our sweet Bryan Jinhua!

 Your easy going, sweet disposition are a JOY!

We are INCREDIBLY blessed to be your parents

....although today we also think of your birth parents who must be remembering the day of your birth. We long to tell them about what a wonderful little boy you are - I know they would be so proud of you.

Last year we celebrated Bryan's birthday without him as we waited for the end of our paperwork to be processed

In China Bryan celebrated with a cake from Miss Tammy.
She also shared with him our photo album letting him know HE HAD A FAMILY!!!

I love this picture of Bryan seeing HIS mama and baba for the first time!

I just LOVE the sweet look on his face!

"Is that REALLY *my* fire truck bed?!"

oh sweet Bryan - we are soooo BLESSED to be your family!!!

(AND his little friend will be joining HER new family in a just a few weeks!! We will have to make the trip down to FL to visit her sometime soon - thank goodness for skype to bridge the distance!!)

----a little update----

3 weeks ago Bryan had blood drawn for a genetic test - we await the results.

2 weeks ago during PT a very experienced doctor observed Bryan. She must have been almost 80 and has seen thousands of patients. She has also traveled the world seeing patients in India and Africa with polio. She felt very sure what she was seeing in Bryan was polio. 

Our hearts continue to be hopeful that Bryan's diagnosis will not be degenerative!!


1 week ago Bryan had casts made for a new AFO for his left foot - we have an appt. later in September to pick it up. I am hopeful that it will work better than the last one.

(We brought Duplos to pass the AFO making time)

THANK YOU for your continued prayers for Bryan!

Blessings, Sandy

Friday, July 17, 2015

Bryan Update!

Bryan has now been our son for NINE MONTHS!!

How is THAT possible?!

Bryan is doing AMAZINGLY well! He loves playing with his siblings. He is getting stronger. He is a good eater - although he is still 29 pounds - but he has grown 2 inches since he came home. Bryan is an easy going, happy child - we are so blessed! He can understand what we say - but understanding his speech is hard (we catch maybe 25%?). He isn't  potty trained yet - we tried a bit this summer and decided to wait a bit longer.

 Bryan LOVES playing outside and will frequently get his siblings to push him up and down the driveway in this little car :)

 Since Bryan's speech is coming a little slow he had a hearing test just to rule out a hearing issue and thankfully passed just fine! We will give him a few more months at home before we start speech therapy.

We are still waiting on insurance approval for genetic testing.

We are still waiting to hear back from the dental department to find out where Bryan will best be treated for his extensive dental work.

 Look who is using his walker ON the wood chips!!

 Bryan is able to walk around the playground to each of the places he wants to play! Freedom for him - and mom and dad :)

 Bryan is even getting strong enough to use his walker on the grass a little bit - assuming it is flat and cut :)

Bryan was THRILLED to take a kayak ride with Jamma! He was SO excited to ride on a BOAT!

Bryan's first time playing on the beach!

He LOVES the water and the outdoors!

Bryan playing at the sprinkler park. He is getting really good at using his walker and walked ALL over!

and the BEST for last....

Bryan LOVES swimming!

Bryan had a few aqua therapy appointments before vacation. With Jamma's help he has turned into a fish! He LOVES the water!! 

AND it is soooo good for his muscles/core strength!

Luckily Jamma is a fish too so she takes the kids swimming almost daily during our vacation month - win win - since cold water and bathing suits are not my idea of a vacation!

Blessings, Sandy

Monday, July 13, 2015

Standing is Stupid!

I *love* this blog post! 

It is a quick read and I encourage everyone to read it - especially those parenting a child with a special need.

It is only natural to get excited when Bryan takes a few independent steps.....but I have always felt it was a little bittersweet when the kids and I get so excited and cheer him on.

On one hand - it is EXCITING and Bryan is EXCITED to be walking....

On the other hand is it really "everything"?! What if he never walks independently? And we have put so much emphasis on walking.....

Does it mean Bryan has less value? Does it mean we love Bryan any less?

We LOVE Bryan just the way God CREATED HIM!

Blessings, Sandy

Sunday, May 31, 2015

First Dentist Appointment

Bryan had his first dental appointment this week. 

He did REALLY well - he cooperated for everything including x-rays!

but.....turns out he has EIGHT CAVITIES :(

including THREE teeth that need root canals and crowns :(

This really isn't unusual based on having spent his first 4 years in an orphanage...

but Darren came home with GREAT teeth and we had hoped the same for Bryan.

Oh - my poor sweet much dental work is no fun :(
(I was hoping he might be able to get it taken care of in the hospital - all at once - and where he wouldn't remember it, but it doesn't look like our insurance covers such treatment)

Please pray for Bryan - that he would be in no pain while we get our insurance coverage figured out (he may have to wait until January for treatment)....and that he won't have a negative dental experience.

Bryan just LOVES playing outside!

Did I mention how much I just LOVE this sweet boy?!

Bryan definitely has MY HEART!

 and I thank God daily for opening up my heart/allowing me to LOVE Bryan as my own!

Blessings, Sandy

Saturday, May 23, 2015

BIG Day!

Bryan had his BIG appointment today. The one where he sees his neurologist, physical - medicine - and rehab. doctor, and PT all at the same time. 

And....He ROCKED it!


Although he is still a MYSTERY - they are leaning AWAY from SMA!! and towards polio or another virus that effected his nerves and muscles.

They think he is getting STRONGER!!

They think he is asymmetric - which would again rule OUT SMA!!
(Although they do admit they know almost nothing about Distal SMA which is what they have suspected he has.....)


The HOPE in that room was PALPABLE!!


Bryan starts additional PT in June....Aqua Therapy - how COOL is that?!

Also in June we FINALLY have our appointment with genetics.

Feeling hopeful and resting in the HOPE given by Jesus, Sandy