Crawling

Two of Ryan's physical therapists have recommend a new piece of equipment for Ryan called a Creepster Crawler.  The Creepster Crawler is a training device to help children learn to crawl while supporting their trunk.  This would be especially useful for Ryan for several reasons.  First, it would give him another weight bearing opportunity which will then strengthen the bones in his legs AND arms.  Second, it could give him a way to move independently.  Third, in technical terms, it will give him proprioceptive feedback meaning it'll give feedback to help him know where his body is in space. Finally, and maybe the most important to Ryan, is that he LOVES moving through space and so he's very motivated, and so we've been really successful with crawling.

One of the great things about the Creepster Crawler is that it supports Ryan's weight so that I can then help him with his arm and leg movements instead of trying to do everything with just my two little hands.  BUT... the physical therapists and our durable medical equipment (DME) provider said insurance doesn't approve them, and they cost about $550.  However, our TEAMability physical therapist wrote a letter of medical necessity requesting one for Ryan.

I know there's a lot of people who have negative experiences with insurance companies, especially lately. But, today our health insurance provider MADE. MY. DAY!!  They approved the Creepster Crawler as a medically necessary device for Ryan!  I'm so thrilled!!! And, thankful!

I can't wait to see what Ryan will do.

Seven Years

Seven years ago tonight I sat upstairs at a desk in our game room feeling nervous about the future, but really unsure of why.  The next day's events were not a new thing; I already had five other children and four of them by c-section. I felt confident in my doctor's and all of the baby's prenatal tests had come back normal.  Yet, I had a sense that life was going to change.  And, boy has it changed in 7 years!

Seven years ago tomorrow, the windows of Heaven opened and I have loved Ryan since the moment I first met him. With each child, birthdays feel like a special moment to reflect on not just the first time I got to hold them, but on the passing years.  With Ryan, each birthday feels a little extra special.  Perhaps not knowing what each day will bring has made me a little more grateful that we made it to yet another birthday.

Additionally, since I don't think Ryan marks time with a calendar and I want him to feel really special on his birthday, I have been thinking about and talking about and counting down to his birthday ... well, let's just say A LOT!  And, it's made me think ... a lot.

Recently, I have read and heard some people question whether God is real, whether prayer works, if God really knows or cares about any one person, and other such things about Him.  So, in honor of Ryan, I want to share with you some things that I have learned because of Ryan.

I know God has a better plan than I do because when Ryan took his "first steps," my friend was there to record the sweet hug Ryan gave me when he finally made it to me. I wouldn't have been able to focus a camera through my tears and I'm so blessed to have that one moment in time caught forever.  I didn't know he'd "walk" that day, but God did and so He made the plan work.

I know that God knows me by name because I have had a friend call to say, "Here's the name of a great Pediatric Orthopedic Surgeon and a great Hematologist Oncologist, and here are their numbers."  I had just found out that I needed that information, hadn't posted it on social media, or told anyone, but God knew.

I know that God knows my needs because I have been rushing out the door to the Emergency Room and accidentally picked up a call on my cell phone. It was my friend (and visiting teacher) calling to check on me. She was then able to help make the necessary emergency arrangements for the other children.

I know that God sends angels, both seen and unseen, because I have felt comforted to go to sleep at night knowing Ryan was being watched over.  I have seen countless angels perform countless blessings and miracles in our lives, including but not limited to a small army of angels that sacrificed to bless us with Ryan's van.

I know that God answers prayers because I have had moments when I have felt the courage and strength wash over me that comes from praying and having others pray for you.  The power of prayer has lifted the burdens, given me courage, and strengthened me to do all that is required.  On my own, I am not enough.

Over the years, there have been comments made to me about what a super mom I am or what an amazing job I do with Ryan.  I want to tell you that I am not a super mom and I don't have any super skills.  And, if you have ever thought for even a moment that you saw a glimpse of a super hero cape on me, it is His power -- the strengthening power that God gives.  I am just a short little girl who really, truly believes that God lives and that He will strengthen me to do His will.  I know with every tiny piece of my body that God loves Ryan and that God sent him to earth.  I don't know why Ryan came in the body that He did. I have some theories, but I don't know.  But I know God does.

And, tomorrow we will celebrate and give thanks to God for such an amazing SEVEN years with Ryan!

Taste of Summer

I found this recipe on Saturday at HEB.  It is SOOO delicious and tastes like a bite of summer.  If you can use tomatoes that are fresh from the garden that would probably be best, but if not, at least use some good vine ripened tomatoes.

1 long loaf ciabatta, sliced
1 pound tomatoes, diced
1/4 cup HEB Basting Oil (Olive oil with some herbs)
1/8 cup HEB Organic 3 Leaf Balsamic Vinegar
3 Basil leaves, sliced
Salt and Pepper to taste
Parmesan, optional

Toast your sliced ciabtta in the oven until slightly crispy. Dice your tomatoes, and toss with basting oil, balsamic vinegar, basil, salt and pepper.  Allow to sit at room temperature for at least 5 minutes. Top ciabatta toast with tomato mixture.  Top with shaved Parmesan, optional.

A couple of notes:  I added just a little extra balsamic vinegar, used sea salt instead of table salt, doubled the amount of basil, and I left out the pepper -- just personal preferences. My family enjoyed the Parmesan, but I thought it kind of dulled everything.  I like the Parmesan by itself.  ;)

Perfect Brightness of Hope

I was driving down the road this week, feeling a little overwhelmed with a particular situation, and I was conversing with my Heavenly Father about it.  I felt I had lost all power of influence with my friend who has some major stuff going on and I felt incapable of being helpful yet I feel responsible to be helpful.  I have invested a lot of time, energy and love into helping this person and so it's tough to watch them make mistakes that may have heavy consequences.

Then a scripture that I had memorized about twenty years ago came to mind:  2 Nephi 31:20.  The scripture says, "Wherefore, ye must press forward with a perfect brightness of hope, and a love of God and of all men...."

I have always applied this scripture to me -- that I need to be careful not to become discouraged, which is true. But, let me give you a little more of the before and after.

Nephi, an ancient Prophet who lived before the time of Christ, said, "... ye have not come thus far save it were by the word of Christ with unshaken faith in him, relying wholly upon the merits of him who is mighty to save." (2 Nephi 31:19).  That is so true!  This journey has really required me to rely on my Savior and I'm confident that it is through Him I have been strengthened and made more capable than I really am.

Then Nephi teaches about pressing forward with a "perfect brightness of hope."  I've always applied this to me and my path to eternal life.  However, in that moment, I realized that I need to have hope in His power to save my friend, and not just kind of hope for it, but have a "perfect brightness of hope."  And, that hope needs to be powered by a love of God, AND a love for all men, including those who are making decisions that I feel frustrated by, don't agree with, can't relate to or just simply don't understand.

Nephi continues on to give some important direction as to how we can do this seemingly hard thing.  He says, "Wherefore, if ye shall press forward, feasting upon the word of Christ, and endure to the end..."

So, in the scriptures, if statements are typically things we should or should not do followed by a then statement of the consequences -- blessings when we follow commandments and consequences when we choose not to follow.  I have come to really know the power of this if statement -- "press forward, feasting upon the word of Christ..."

I have found that really studying and pondering scriptures helps me so much, not just in this situation but in all areas of my life.  (The endurance thing ... well, I'm still working on it.  I am confident I am better at sprinting through tough things than running the trial marathons.  But, I'm working on it.)

Then Nephi gives us the promise that will follow our steadfastness -- the then statement.  He says, "behold, thus saith the Father, ye shall have eternal life."  Isn't that what we all want?

Nephi gives one more thing to remember:  "And, now, behold my beloved brethren, this is the way; and there is none other way nor name given under heaven whereby man can be saved in the kingdom of God."

I can't save my friend, but He can.  And I can work to be "steadfast in Christ" and to maintain a "perfect brightness of hope."  I can work to show my love of God and to show love to all people.

I'm so thankful for being a merciful God who teaches me line upon line.  I'm so thankful for the counsel to memorize scriptures.  I'm thankful that when I needed to be taught the Holy Spirit was able to use this scripture that I had memorized about two decades ago to strengthen and encourage me.

"I can do all things through Christ which strengtheneth me"  (Philippians 4:13)

Dreaming of Independence

In Ryan's nearly 7 years of life, I have never once had a dream that included him walking or independently moving.  Please don't misunderstand.  I would *love* for Ryan to be able to independently move himself.  I have just never seen him do it, even in my dreams.  I've had two friends who have seen him walking in their dreams and that's awesome.  I just have never had the experience.

This afternoon, after getting Ryan's new DMO (aka his "dive suit"), we were both resting.  I must have drifted off to sleep while reading.  I saw Ryan ... as clearly as I see him right now ... in his wheelchair.  He was using his arms to move the wheels on his chair.

What a vision.  I hope to really see him doing that someday.

New "Dive Suit"

We have been waiting for more than a month for this custom fit "dive suit." And, we are so excited that it's finally here and it actually fit perfect. (At least that's what we think today. Hopefully, the Physical Therapist will agree.)

 No, we're not taking Ryan diving. (However, that would be really cool if we could.) This "dive suit" is actually a dynamic movement orthotic or a dmo suit. It's also sometimes referred to as a dynamic lycra orthosis or a dynamic elastomeric fabric orthosis. Those are the fancy names for it. Dive suit sounds so much better, doesn't it? And, it kind of looks like a wet suit, a shorty, right?

I was surprised when we got it that the fabric isn't as thick as I anticipated. The other dynamic movement orthotics that I've seen seem to be made from a heavier weight material that feels like neoprene, you know wet suit material. This Dive Suit is kind of like Spanks on steroids. But, a Spank Suit just doesn't sound right.  ;)

So, why is Ryan wearing a dive suit? Well, the fancy reasons are: proximal control, core stability, biomechanical re-alignment, improved posture, dynamic balance, improved muscle function, improved muscle tone.

Basically, we're hoping it helps with his scoliosis, shoulder sublexation, and hip rotation. So far, Ryan reports that he likes it. But, here's the best part:

When we sat Ryan up, I put his hands down on the exam table and reminded him that he could push through his hands to help keep himself up. Normally, without the dive suit, Ryan sits in a C shape and needs maximum support. He can't sit at all by himself. Normally, when I put his hands down and remind him to push through them, he pulls them back up off the table. And, normally, he rests his head on me while I support him. NOT THIS TIME! 

When I reminded him he could push, he pushed! He was able to sit (almost) straight up and hold his head up for several seconds. He loved it, too. When I laid him back down to rest, he'd rest for a couple of minutes and then try to get himself back up. Isn't that cool?

I'm so thankful for the people who design these awesome medical technologies, the investors who believe in them, the engineers who perfect them, and the doctors and therapists who know when to use them. We live such a blessed life!