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

Sunday, February 1, 2015

Approved!

We got the call on Friday that our insurance approved our request for Bryan's genetic testing!
(We thought we would be waiting MONTHS to hear back from the insurance! Maybe the months are how long the testing takes to process?!)

WOO HOO!
(None of those scary tests with LOTS of needles in his legs!)

So Tuesday we will head into the hospital for a blood draw.
(Armed with a new Lego Duplo toy!)

These brothers have sooo much fun playing together!!


You might notice the walker sitting in the background. It is on loan from our school system until Bryan's arrives. He has used it only THREE times in the two weeks we have had it. A few days ago I tried to gently encourage him to show daddy how he could walk with it (and he can walk really well!). He broke down in tears/started sobbing. We are not really sure why. Daddy hasn't even seen him use it.

 Bryan seems to prefer to crawl, be carried, hold our hands while walking, and even use his shopping cart to get around.

We see another new PT this week at our doctor's office. She specializes in kids with SMA and also has extra training in wheelchair use. Maybe she can help us figure out his resistance to using the walker?


I have found myself tearing up so many times this week that I have lost track.
(Normally I go MONTHS without crying/tearing up!)

But then I look at our HAPPY, JOY FILLED son and it is hard to feel sad!!

Thank you for your continued prayers for Bryan and our family.

Blessings, Sandy

Monday, January 26, 2015

Blessed with support!


We have felt an AMAZING amount of SUPPORT and LOVE this week!!

THANK YOU FRIENDS!!

99 friends commented on my facebook post and many sent me a message as well!!

This week the tears have fallen often and even more often have welled up in my eyes...

at those times your SWEET words of SUPPORT have helped so much!

It has brought us great comfort knowing that so many of you are lifting up Bryan and our family in prayer 

AND joining us in praying for a MIRACLE!!

ALL of the comments were sooo encouraging to me, and I read them many times.  Here are a few examples ...

"Hugs my friend! Tears are healing. We have to remember that we are ALL "terminal"., just some of us have a name for it. God brought him across the ocean and placed him in your family for a purpose. Live each day intentionally and know that at the end, "Good and faithful servant" will be your reward. Raise up an arrow to pierce the darkness. Nothing is wasted in the Kingdom of God."

You wouldn't believe how many times I have repeated to myself this week:
"we are ALL terminal"!!

"Praying for healing & clarity in his diagnosis. I know this was a hard weekend for you friend & I continue to be amazed in God's perfect peace, healing & miracles when we get stuck in the pain of those words. Grieving is normal & healthy, but also know you have an incredible amount of people praying over him & your entire family & will not stop supporting you guys through everything!"

"Mourning with you but with the expectation and hope of God's miraculous power bringing something good and glorious from this. You are not alone, and now, praise God, Bryan is not either." 

"Sandy-I am having trouble with words. I have sat in a room and been told I have a child with a terminal disease. There is no other experience like that. And yes, there are oh so many tears. We were told Laney's life expectancy was three. She will be 19 this spring. We don't know the future, all we have is today. And today you have Bryan laughing and living and loving in your family. Cry when you need to, treasure every snuggle, make his life as wonderful as possible. You will never have any regrets."

"My heart aches with you, Sandy! But I am also rejoicing that Bryan is so blessed to have your family so he doesn't have to go through this alone! Mostly, you are bringing Christ in his life, the most important thing in our lives! Father, I pray that you pour blessing to the family and bring healing to Bryan, but mostly that Christ's presence is palpable through the Holy Spirit in their lives! Amen!"

" Standing with you on God's promise that He will never leave you. May Jehovah Rapha, our Healer God, use Bryan's illness to show His power and glory!!"

The comforting and supportive comments were salve to our souls. Offers to connect us with other families with kids with SMA and ALL THE PRAYERS - mean so very, very much!!

We can not thank YOU enough!!

...and now a couple pictures of our sweet Bryan:

Bryan CAN NOT get enough of playing outside in the snow!


 I pull him around in the sled. He LOVES going down the hill!
(Did I mention that I don't like the cold?!)

God also brought a new PT into our lives. We met with her last week for an evaluation. We went back again this week - and ended up with more love and counseling than therapy! 

God knew just what we needed!

She later texted:
"Thank you for bringing Bryan to see me. He's a beautiful child with a loving family. We both know miracles do happen and he is perfect as he is. Even if he does have SMA just take one day at a time, enjoy him as you are doing and be hopeful."

She empowered me AS HIS MOM! She said I should/could use MY judgement on what I thought was best for him (AFO's, walker, wheelchair etc). She also encouraged us to help him reach his full potential.

WHAT A GIFT TO THIS GRIEVING MAMA!

We have also found comfort in scripture including:

Habakkuk 3:17-19
Even though the fig trees have no blossoms,
    and there are no grapes on the vines;
even though the olive crop fails,
    and the fields lie empty and barren;
even though the flocks die in the fields,
    and the cattle barns are empty,
18 yet I will rejoice in the Lord!
    I will be joyful in the God of my salvation!
19 The Sovereign Lord is my strength!
    He makes me as surefooted as a deer,[a]
    able to tread upon the heights. 

 Blessings, Sandy

Sunday, January 18, 2015

Our hearts are breaking

Typing in the blog address to write this post I am reminded that indeed it is a journey of FAITH!

Friday was hard....

We are still processing the appointment so it is hard to put my thoughts into words...

We are mostly feeling SAD for Bryan as his future...seems....difficult...

The doctor's don't know his diagnosis yet. We decided together to try and pursue genetic testing. Apparently insurance companies don't like to pay for it. The doctor says we are not in any rush so we will try and take the time to convince them to pay for it before doing other potentially painful tests (good idea!!).

Both the neurologist and physical medicine and rehabilitation doctor suspect Bryan has Spinal Muscular Atrophy (SMA). 

SMA is a terminal and degenerative disease that causes weakness and wasting away of  the voluntary muscles in infants and children.

SMA is the #1 genetic killer of young children

SMA occurs in one out of every 6000 births

1 in every 40 persons unknowingly carries the gene for SMA

SMA is a pan-ethnic disease - it does not discriminate based on race, ethnicity, or gender

There is currently no cure or treatment

Researchers estimate that a cure or treatment is attainable in as little as five years

There are 4 types of SMA...it is likely he has type 2.

We PRAY Bryan doesn't have SMA!

We PRAY for a MIRACLE - God still performs them!

And:
We love Bryan with ALL our hearts!! 

We are soooo BLESSED that he is a part of our family!!

Knowing what we know now....We are STILL glad that we adopted Bryan. We can't imagine him going through this without a family LOVING him. 

I feel INCREDIBLY blessed to be his mama!

AND....I have cried more tears this weekend then I have cried in a loooong time. 

My heart BREAKS for Bryan.  


  Bryan LOVES playing in the "see-no" (snow)!

Thank you for covering us in PRAYERS!!

Blessings, Sandy