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

Monday, March 16, 2015

More PT Fun and a Darren Update!


 PT continues to be full of FUN new gadgets. Bryan laid in this contraption and played with toys. It allowed his legs/hips to move around with zero gravity - which is supposed to be great way to exercise them.

Bryan tried out a new style walker/gait trainer at PT too. The new PT thinks he might a little more support than the walker we have on order/what our old PT thought. This one has a sling style seat so that if/when he falls when walking it will catch him. Also it has a padded band around his chest to provide more support.

The PT is hoping to have a loaner walker for us to take home next week.

Although in our untrained minds a simpler walker that Bryan can get in and out of on his own seems better. It is true that he falls often when walking so maybe this is what he needs. The bummer is we will have to put him in and take him out - so it is a little less flexible for just a quick walk across the room.


Big brother Darren (our ORIGINAL journey to China blessing) had his six month cardiology check up this week.


He had a EKG


Darren also had a ECHO.

The hope was to clear Darren for one year check ups. The ECHO showed a couple of areas that have changed since his last visit. The aortic outflow has increased obstruction. His VSD patch is leaking a little bit more. (I think THAT is what they said....boy-o-boy are hearts complicated/confusing!!).

So we have to head back for another check up in 6 months as they want to keep a closer eye on Darren's heart. 

It was a  bit of a wake up call for Erik and I. Darren does SO WELL day to day. Last summer he learned to ride a bike! Last summer he learned to swim under water (thanks to Jamma!)! He runs, he plays, he eats, he doesn't tire faster than the other kids, and he never complains about heart pain.......BUT he had a COMPLEX heart repair. We need to remember that! 

It was just another REALLY good reminder to LIVE each and EVERY day to the fullest!!

Blessings, Sandy

Monday, March 9, 2015

PT and more Holes!

Bryan had a *fabulous* PT appointment this week!

He got to WALK around in this Johnny Jump Up type contraption - although it didn't bounce/jump - just walking!
 There were tracks ALL OVER the ceiling so he could go anywhere!


 Bryan LOVED the freedom to walk and explore!


For the record: Two more pants developed holes - BECAUSE Bryan is ACTIVE!

Blessings, Sandy