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

Monday, February 23, 2015

The Phone Call...


The neurologist called this week. The minute I heard her voice I took a DEEP BREATH!

I knew once she said the results that she couldn't take them back and I couldn't un-hear them. 

Once the words were said then there would be NO TURNING BACK!

She said "Bryan's SMA genetic test showed that he does NOT have type 1, 2, or 3". 

WOW!

WHAT does this mean?!

Has GOD performed a MIRACLE right before our EYES?!

She went onto say that she still thinks Bryan has Distal SMA. 

(Although when we google Distal SMA Bryan doesn't exactly fit the description - which mentions adult onset - but he does seem to be primarily affected in his limbs.) The doctor isn't sure how distal SMA is diagnosed. She also mentioned polio again. He doesn't quite fit the profile for having had polio as his weakness is basically symmetrical and polio usually isn't. Bryan had the polio vaccines in the orphanage so he tests positive for the polio titers. Apparently there is no way to tell the difference between having had polio and having had the vaccines. She also brought up the EMG again - but says she would only consider doing that if it will give us answers. 

We are CHOOSING to PRAISE GOD for this good news!

We suspect that Bryan does have some form of SMA - based on how he presents and other kids we have observed/read about, and that his doctors haven't raised any other strong possibilities. We also PRAY that if that's the case, the SMA he has is not as serious.

It may be a while before we know anything....the neurologist is researching and seeking advice from colleagues. We are still waiting to get an appointment with genetics to get a full genetics screening done. Bryan may or may not need to have an EMG or muscle biopsy. We are hoping to contact the leading SMA doctor to see what we can learn about distal SMA.


Bryan riding in my backpack on a field trip to the Aquarium today. He loved it!


THANK YOU for continuing to pray for Bryan and our family!

Blessings, Sandy

Sunday, February 15, 2015

I have decided I don't want the genetic test results....


Bryan loves Legos!

He also loves to play with trains, cars, and Duplos.


I just love watching his sweet little face concentrate on building.

He sometimes gets frustrated, but nothing that help from a big brother or sister can't fix :)


I am so in LOVE with this little man!

His JOYFUL spirit, his easy going attitude, and his KISSABLE cheeks!

We saw another new PT this week. 

She has seen many SMA kids over the years so has LOTS of experience with them! She agrees that Bryan's AFOs are too heavy, bulky and not helping him (so we won't be using them anymore - YAY!). She is going to make him a cast to wear on his left foot/ankle at night to increase it's flexibility over time. Since he sleeps next to me my mom did mention that it should be an interesting night time weapon :) She also understands that SMA kids don't gain muscle - so typical PT isn't helpful. She talked a lot about preserving what he currently has and not fatiguing him too much. She talked about preserving him for the possibility of  future treatment/cure - that we want him at his best so he can take advantage of what might be coming in the future.

The PT also mentioned that when Bryan walks his hips get cocked funny as well as his back. She isn't sure we should push walking - if Bryan wants to then fine, but otherwise his crawling might be better for his body. 

That was kind of hard to hear....

The walker/gait trainer that is on order hasn't come in yet - I wonder if Bryan will even use it?

The PT did mention ordering a wheelchair at some point in the future. She said we would start with manual. I asked if we would teach him to move it around - but she thought that would be too fatiguing for him so we would push it for him. 

That makes me sad to to think about that.....

We expect to get the genetic test results this week - or next.

I have decided that I don't really want the test results. In my heart I know Bryan has SMA....but that slim, very minute, teeny tiny chance he doesn't have SMA will be gone once the official report is in.

THANK YOU for continuing to PRAY for Bryan and our family!

Blessings, Sandy

Tuesday, February 10, 2015

Dragons, Cheese, and Needles!


This weekend we attended our first Chinese New Year celebration!

It was fun to connect up with other local families with children adopted from China.


 (Bryan seems to be paying more attention to the drummer than the dragon)


Bryan had his first "CAR CART" experience at Lowe's this weekend!

He was VERY excited and apparently has started to perfect the "CHEESE" smile :)


Bryan received two vaccinations on Thursday (He is playing catch up from a few he missed in China). Then on Friday we headed to the hospital for his genetic testing in which they drew SEVEN VIALS of blood! (I was starting to wonder if he was going to need a transfusion!!) 

He was none too happy to see that needle....so between tears he kept saying

"It's Darren's turn....It's Darren turn!!"

and of course Darren was saying "I don't want a turn....I don't want a turn!"

I just had to laugh!!

Blessings, Sandy