Tuesday, October 20, 2015

One Year Home!!




How is it POSSIBLE that THIS little face has been HOME for ONE YEAR?!



In someways it feels just like yesterday and in other ways it feels like years ago that we first met Bryan Jinhua in China!


He is now walking with his walker - FAST!


And swimming - he LOVES it!


And riding his NEW bike - with a little help :)


And playing with his siblings!


And receiving LOVE from a family - HIS FAMILY!


WOW! What a difference a YEAR makes!!!


SHORT UPDATE: 
- We are still waiting on Bryan's genetic test results...
-A couple of weeks ago while Bryan was being fitted for a new SMO our *FABULOUS* PT found out two doctors with polio experience were going to be in the building. We camped outside their treatment rooms and they took a few minutes to observe Bryan and ask us questions. One of the doctors currently works with adult polio patients. The other doctor worked at our local hospital's polio ward - at the time there was a polio ward (it has since been closed). They both have LOTS of hands on experience working with polio patients and BOTH concurred that Bryan looks like someone who has had polio.
- We applied for a grant last week for Bryan's dental work. He has 12 teeth that need dental work including THREE that need root canals and crowns. THANKFULLY we have gotten approval to have the work done in the hospital under anesthesia (which our insurance covers). We just need help covering the dental portion (which our insurance does not cover).  

We continue to PRAISE GOD that Bryan is our son!

We feel VERY HOPEFUL that Bryan does indeed have polio (or the after effects of some similar virus) as opposed to the doctors' initial suspicion of a degenerative, fatal condition.

We feel confident that God LOVES Bryan even more than we do and we TRUST in God's plan for Bryan's life!

Blessings, Sandy

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

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!!

OUR HOPE IS IN THE LORD!!

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 Bryan....so 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!

They were IMPRESSED BY HOW WELL HE IS DOING!!

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.....)


He WALKED AROUND THE ROOM WITH HIS WALKER - like a BOSS!!

The HOPE in that room was PALPABLE!!

PRAISING GOD FROM WHO ***ALL*** BLESSING FLOW!!!

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

Friday, May 15, 2015

Mother's Day



Last year I received THE BEST MOTHER'S DAY GIFT *EVER*!!!

This picture - 

of the son we were waiting for, dreaming of, praying for, tackling a mountain of paperwork for....


And THIS YEAR - my first Mother's Day as a MOM to EIGHT blessings!

Blessings, Sandy

Monday, April 27, 2015

Our Sweet Boy!


This boy gives THE BEST snuggles! I get kisses, hugs, and LOTS of love on a daily basis - I am so BLESSED!


Bryan tried this new toy at PT last week. I am not sure what it was called (anyone know?) - but it worked on his core strength (this is all assuming we can build core strength). Bryan's legs had to be tied together so his feet wouldn't fall off. He did really well and had fun riding it!

The PT tested Bryan's quad muscles on his right (weaker) leg. Only two of them responded so she recommends he continue wearing an AFO on his right foot/leg (not a shorter brace) since he tends to walk on the outside of that foot. She gave us an insert to wear in his left shoe. Shoes are still hard - as they have to be HUGE to fit over the AFO (so VERY heavy) and without the AFO he falls off the shoe really unnaturally stretching his ankles.We tend to keep him in slippers (Robeez). 

Bryan continues to take more steps independently each week - but only if he is wearing his slippers. With the AFO and shoe his balance must be off.

Blessings, Sandy

Tuesday, April 21, 2015

Fun Outside!

Bryan's first trip to the park!

He LOVED these spinning cups!


Bryan and Darren had fun on the see-saw!


Bryan had fun digging in the sand - actually he did better than I thought he would do!

And then we had a FEW days of warm weather....so we got to play in our new and improved yard (that the kids say is like a playground now!)


Play Structure (thanks Grandma and Grandpa K.)....with a new slide (thanks Jamma)


 A new sand box - perfect size for two little fellows!


Swings!


And a new disc swing (thanks Jamma!)

Blessings, Sandy

Tuesday, April 14, 2015

Easter and a Wagon!

Bryan has been doing well. He is starting to talk a bit more. This has also lead to a bit more frustration. He knows what he is trying to say....but WE don't always know what he is trying to say. I try and get him to point to what he wants or take me to what he wants, but he just thinks I should KNOW what he is saying. The kids can tell he is getting upset and will start saying "Mom - Bryan is going to cry....he is going to cry...." (We can ALL feel the tension building, but there is NOTHING we can do!) and then the tears come....it is so very sad :( 

Bryan continues to take steps in between furniture, but also crawls enough to put holes in almost all his pants. Thankfully a couple of weeks ago a trip to Salvation Army lead to five new-to-us pairs of pants for $7!


 Bryan finding his FIRST Easter egg!


Bryan coloring his FIRST egg!


We were gifted a FANCY wagon by an agency that helps kids with mobility issues!!
(It was missing the parts to hold on the front two wheels - but nothing a phone call and a waiting a few days couldn't remedy!)


Once the parts arrived we attached the front wheels and then we were off!
(Now we just need a little bit of warm weather!)

Blessings, Sandy

Sunday, March 29, 2015

Stronger?


Bryan's PT is convinced he is getting stronger. She has been seeing him a little less than two months now. She thinks that both his legs and his core strength are increasing.

Two weeks ago she measured Bryan's legs and discovered his left (stronger/dominate) leg is 1 1/2 cm larger in both the calf  and thigh diameter.

Bryan has been taking a few more independent steps - between the chairs and couch or between the table and the island.

.....but then I remember how his PM&R doctor said that Bryan could appear to get stronger - just because he is now moving around more and getting better nutrition - not because he actually doesn't have a degenerative condition.

It is hard NOT to get my HOPES up - and I think that is partly because I *DO* believe that GOD PERFORMS MIRACLES.....I do believe that HE can HEAL BRYAN - so I will continue to PRAY THAT EVERYDAY!


 More play time in the johnny-jump-up type contraption!


 Shooting baskets just like Baba, Alex, and Jason!


 Bryan wasn't that sure about the ball pit. Of course he was hanging more ABOVE it than actually sitting and playing IN it!


Look at those skinny legs!


I love seeing Bryan just walking along :)

Blessings, Sandy

Monday, March 23, 2015

Playing outside and PT fun!


We had a taste of spring this week - YAY! Bryan loved playing outside!

It's a little challenging to find activities that Bryan can do outside. Right now it is wet, muddy, and the ground is cold. We also live in a country sub - so let's just say the grass isn't the manicured type that is made for crawling around on :)

We have Bryan's modified tricycle. My bike has a kid's seat on it and he loves taking rides on that. Just this weekend we purchased a baby/toddler swing for the play structure. I am hoping when we get Bryan's walker figured out that it can also give him some freedom/some more to do outside.


Bryan tried rock climbing. He is quite an easy going child and usually is willing to participate is just about any activity the PT suggests. He didn't like rock climbing 


Bryan got to walk around in the johnny-jump-up type contraption again this week.

He likes it - but was getting tired by that point in the appointment.

Bryan did get to shoot a basket!


Bryan did walk along the parallel bars.


The PT raised him up high so he could "fly"!


And flying helped him reach toys off the top shelf!

----------------------------
We don't see Bryan's neurologist and PM&R doctor again until May. 

We are still "in line" waiting for a genetic testing appointment.

Bryan has been taking a few more independent steps. The doctor said it could be a "false positive" - just due to good nutrition and getting a chance to move around. We are trying not to get too hopeful - but it is hard. The PT thinks Bryan may be getting stronger. She continues to wonder about polio. The last time we saw the PM&R doctor he told Bryan "You are a mystery".

We continue to LOVE and enjoy our JOY FILLED little boy - we are blessed!

We are trying to "be still" and trust God with the future.

Blessings, Sandy