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

Sunday, January 11, 2015

Test Results, Bowling, and a Kiss!

First things First - MRI results:

We received the following from Bryan's neurologist: "Hello. I wanted to let you know that Bryan's MRI of the brain as well as the lumbar spine was normal. His CK was also normal. It tells me that there is not a tumor and there wasn't trauma to his spinal cord causing his leg problems. 

At your next visit on 1/16/15 with myself and Dr. H., we can discuss the next step, EMG/NCS vs. Biopsy vs trying to do genetic testing."


Like a good mom I googled the different tests listed above.  


The EMG/NCS study examines the integrity of the peripheral nerves and muscles of the
body."
What is the Nerve Conduction Study or NCS?
The NCS involves examining the nerves in your arms or legs. This consists of attaching
wires to the surface of your skin, and administering a small “shock” to see how well the
nerves react and function. These results are monitored on a computer.
What is the Electromyography or EMG?
The EMG examines the muscle activity in your body. This study consists of inserting a
sterile, individually wrapped, needle into your various muscles and monitoring their
activity. These results are monitored on a computer. You will probably be stuck 5-7
times per arm or leg. There is NO shocking during the EMG.
Is the EMG or NCS painful?
The “shocks” during the NCS are not painful, although they may feel slightly
uncomfortable. The needle “sticks” during the EMG feels like a small ant bite, and can
sometimes be uncomfortable, but not painful.
Muscle Biopsy:
This procedure is usually done while you are awake. The health care provider will apply a numbing medicine (local anesthesia) to the biopsy area.

There are two types of muscle biopsy:
A needle biopsy involves inserting a needle into the muscle. When the needle is removed, a small piece of tissue remains in the needle. More than one needle stick may be needed to get a large enough sample.
An open biopsy involves making a small cut in the skin and into the muscle. The muscle tissue is then removed.
After either type of biopsy, the tissue is sent to a laboratory for examination. 
 
Those tests SCARE ME! 

 PLEASE PRAY for Bryan's January 16 appointment. That the doctor's will have wisdom in deciding the next steps in finding a diagnosis for Bryan.

 Over Christmas break Bryan went bowling for the FIRST time!
(Daddy is a BIG Denver Broncos fan!)
 
We were AMAZED as he caught on right away to the "rules" and understood when he did well!


 I love the expressions on both Bryan and big brother Darren's faces!


 What a sweetie!

Did I mention how EASY he is to LOVE?

How well he fits into our family? How well he fits into MY arms?

AND this week I got MY FIRST KISS!!

We snuggle A LOT! We hug A LOT! I carry him A LOT! I kiss him A LOT! We even nuzzle our faces together A LOT! (And he sees me kissing the other kids A LOT)

BUT this week.....after being Bryan's mama for almost THREE MONTHS -

HE KISSED ME!!

Blessings, Sandy
 

Sunday, January 4, 2015

MRI and a Movie!

Bryan had his MRI this week. 

He did AMAZING! 


We love the ball maze toy in radiology! It definitely passed the time as we waited.
(It brought back so many memories of waiting with Darren! Bryan enjoyed the balls as much as Darren did!)


 Bryan was gowned up and ready to go.

Child Life came by and showed him a little bit about what to expect. We LOVE that program that helps to make our kids feel comfortable during medical procedures!

Since Bryan has an unknown "muscular disorder" they needed to avoid certain anesthetics. He was unable to have the gas they usually give kids before putting the IV in. They upped the dose of the medication they gave him to help him relax before they took him back. 

There were NO tears leaving us or getting his IV
(ANSWER to PRAYERS!!)


 AND they called us back before he even stirred!!!

(YAY for the nurses who listened to my request! With attachment/bonding/learning to trust so new we felt it was VERY important that we were there when he woke up)


 Bryan woke up - with NO tears!!

He ate a popsicle and had some apple juice. Before Bryan even figured out he had an IV in his hand they were taking it out - YAY!)

And then we headed home! YOUR prayers meant so much to us! 

The day went better then I even DREAMED it could!!

(Bryan has a doctor's appointment on the 16th. We don't expect to hear any MRI results before then)


Later in the week Bryan saw his first movie in the theater.

Isn't that little face just TOO CUTE?!

Luckily The Penguins of Madagascar was showing at the same time as Night at the Museum. We sent the big kids to see the Museum movie and took the 4 littles to see the Penguins. I didn't think Bryan would make it through the whole movie. Thankfully it was really just a cute movie without a scary part. Minutes into the movie I snuggled him and his popcorn on my lap and he sat quietly through the WHOLE movie!

Blessings, Sandy