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

Sunday, March 1, 2015

Holes


Last week Bryan got holes in the knees of TWO pants....


This week so far he has gotten ONE hole....

At first I was feeling a little bummed - after all spring is still a loooong way off and I hate to buy more little pants....

BUT I realized (yes - I am a little slow!) that HOLES in the knees of his pants means he is ACTIVE!!

and for THAT I am PRAISING GOD!!

I sent a message to Bryan's neurologist. Along with a few other questions I asked:
"Is Distal SMA considered a less severe form of SMA than type 1, 2, and 3?"

From what we have read (googled) it seems to be less severe - but I wanted to get her thoughts/opinion. She replied:
"Not as much is known about distal SMA so it is hard to say if it is worse or better, but in my opinion I would probably consider it to be less severe than the typical SMAs, although it can progress just like the typical kinds."  

We continue to pray for a MIRACLE and know that God LOVES Bryan even MORE than we do!


They might appear that they are wresting - but no - Darren and Bryan are SLEEPING!
It looks like Bryan crawled over and decided to use Darren as a pillow - ha!

Blessings, Sandy