The days go on...

Update from Friday.....

Noah's appointments went well....When we went to the pediatrician we finally got his 1 year shots...a little late we are....but not bad considering all he has been through. We also got to see that he has gained a little weight. He is at 16 pounds 11 ounces. He has gained 8 ounces since his surgery 3 1/2 weeks ago. The surgeon looked at Noah's g-tube and said it really looked good, which I was shocked because it was very irritated looking. There is some granulation tissue but he said if it got any worse they could just cauterize it in the office...YAY no more surgery! Prayers were definitely answered...

I have seen this many times and I wanted to share it. It is used by many to describe raising a child with a disability...It is very fitting....And a perfect analogy....

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Welcome To Holland

By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.  You buy a bunch of guide books and make your wonderful plans. The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It’s just a different place.  It's slower-paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever  go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
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Even though we ended up in Holland, we wouldn't trade it for the world. Noah is an amazing little boy and is the light of our lives....

Surreal......

I am just getting to updating about the early intervention meeting from Tuesday. It went very well, they will be setting us up with a physical therapist as well as an occupational therapist. They will also be helping us with evaluating and fitting Noah for a stander. Our first evaluation with the PT will be on November the 29th. Today is a busy day...we have an appointment with the pediatrician...and after that we go see the surgeon that did Noah's g-tube surgery....Praying for that because it is looking like there is some granulation tissue forming. (Meaning the hole is trying to close. Possibly can be cauterized but if not another trip to the operating room....oh joy.) Will update on these visits later tonight....

All I really know to say is what a ride this has been. Last night putting Noah in the tiniest wheelchair I have ever seen was a defining moment. It was exciting but just as much as it was exciting, it was a huge slap of reality. Why did this happen??? Why Noah....why our family?? Why anyone?? SMA is a terrible beast. It has ripped apart our dreams and the dreams we had for Noah.....it has crushed our inner beings.

I must admit...I am torn.....I never thought I could love something so much, yet hate it so much at the same exact time. I hate the wheelchair for what it means....but I love it because it gives Noah the independence that he so desperately needs and desires.

Bitter sweet victory! (by Lane)

As I sit here and write, I can't help but notice this extremely tiny wheelchair sitting next to our sofa.  "Yes! It's finally here," was our first thought.  Excitement, anticipation and curiosity were my emotions from earlier this afternoon.  But as I sat and watched Noah learn and explore his new "toy" (22" tall at the top of the back support), my heart completely broke and tears started flowing.
"This is what my son has to live with for the rest of his life."  "God, why did this happen after everything we had to go through just to see his smiling face?"  "Will they find a cure in time so that he can have a chance to walk?"  "Will he EVER be able to walk?"  These were and are my thoughts after seeing him sit in this absolute marvel of engineering and technology.  My emotions quickly changed.  Anger, frustration, bitterness, and complete sadness.  These were now filling every fiber of my being.

But then something happened...as he was sitting there holding the wheels just rocking back and forth, he let go after a forward push.  He looked at us as if he was saying, "What happened?"  Then he did it again and this time the biggest smile came over his face.  It was if he knew "Now I can actually go somewhere."  It was like he knew this was his ticket to mobility.

I'm excited to see how he does over the next few days, but at the same time I know it is going to be hard to watch.  On top of everything else, two weeks from today, we have to box it up and ship it back to the distributor (it is only a two week demo).  Then new questions will arise, "How do we pay one of these?"  "How long will it be before he can have his own?"

But until then, all I can do....no, all WE can do is take it one victory, or defeat, at a time.

Figured it out.........

45 days.....

Tuesday, we will be meeting with the Early Intervention group. They will be evaluating Noah to see what type of therapy he will need. Then Friday, we meet with the surgeon that did his g-tube surgery and then the pediatrician. Needless to say another busy week....

We continue to struggle, our hearts torn by SMA. SMA is not something that will define us but merely an obstacle that we are trying to conquer. It will always be a part of our lives, but we don't want it to BE our life. It's hard sometimes to even look at Noah and not think of SMA. We are constantly surrounded by it, so much in fact that it is suffocating. It has been 45 days since Noah's diagnosis, but it feels like a lifetime already. It's crazy to think that we have barely even gotten our feet wet with all of the things that will be a part of our new "normal".

We continue to pray for strength as we face the financial, emotional, and physical toll this has taken on us......

Psalm 18:1-2   I love you, LORD, my strength.
                       The LORD is my rock, my fortress and my deliverer;
                       my God is my rock, in whom I take refuge,
                       my shield and the horn of my salvation, my stronghold.

Amen.........

Exhausted.....

Last week we found out that our insurance will only pay for a power wheelchair or a manual but not both. The crappy thing about that is that he cannot get a power wheelchair until he is two. So we will have to pay for a manual wheelchair in order for him the have the independence and mobility he needs and craves. We would definitely rather pay for the $4000.00 manual wheelchair then the $30,000 power one. YIKES!

Another SMA mom suggested that I look into our states Early Intervention program for services. They provide services such as physical therapy for developmentally delayed and disabled children under 3. We will be meeting with them on the 15th for an evaluation of what Noah needs, and then they provide the services in our home. Thank you Lindsay!!!

I hate SMA.....It has completely taken over our lives....

Since we got Noah home we have had issues getting him his full amount of feeding through the night. He gets too full and wakes up gagging or throwing up. So, on top of all of our other issues he is sleeping worse than a newborn. Needless to say Lane and I have been running on about 3 hours of sleep each night.

I know we have both been questioning our faith. It's so hard to believe when it seems like nothing seems to be getting better....I don't expect it to be a walk in the park, but I thought the things we are doing to help him would make it easier. It seems that each day and night continues to be more of a struggle. It puts a huge cloud of hopelessness and anger above me. I hate feeling so helpless. I hate feeling so negative about everything...We really need a break....At least to just catch our breath.

It's bad enough seeing your child struggle. Then to know that their life will be cut short because of a terminal disease. We want the best for him and it hurts to know that giving him the best we can will never be what we actually want to give...it will never be enough.We want to give him strength....we want to be able to cheer him on as he plays baseball, football and all the normal things kids do that so people many take for granted. Knowing that he will never have that opportunity is heartbreaking to say the least. There are no words to describe the feelings that SMA has brought in our lives.

We are SO tired..........

Finally home....

Wow is all I can say about the last few days. It's been a whirlwind of craziness.

Sunday morning when I got to the hospital the nurse told me that we were going to be discharged.....WOW what a little trooper we have. We are totally amazed at how well he did. Children have such a resilience. It's incredible. We got home Sunday at about 4:00 p.m. Shortly thereafter I called home health to let them know we were home. About an hour later the deliveries of supplies and equipment began. Respiratory came first and dropped off the pulse ox/heart rate monitor, cough assist, and suction. Shortly after that, all the g-tube supplies showed up and after that the nurse came to show us how to set up and use the infusion pump. Talk about overwhelming...

The first few nights on our own have went okay for the most part. It's definitely been a learning experience. We see the surgeon on November 18th, for a follow up and then Noah will have his sleep study on December the 4th. I was able to stay home with Noah yesterday which was nice to get him situated at home again...

I am trying to be strong but it is a constant fight every day. I feel the darkness closing in on me and feel as though I am suffocating...I hope this feeling eventually goes away... It has been 24 days since he was diagnosed and I feel like it's been months. I just want to be able to breathe again.....

1 Peter 5:9-10   Resist him, firm in your faith, knowing that the same kinds of suffering are being experienced by your brotherhood throughout the world. And after you have suffered a little while, the God of all grace,who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you.