Our Prader-Willi Syndrome Story- Growing

Prader-Willi Syndrome is quite an interesting disorder because of the way it changes as the child grows. For instance, the distinguishing characteristic of people with PWS is their insatiable appetite. They are constantly hungry no matter how much they eat. As infants, though, individuals with PWS often have trouble gaining weight because they don't eat enough.  Henry had such a weak suck as a newborn and was constantly sleeping, so it was difficult for him to wake up long enough to take his whole feeding and for his strength to last that long as well. I remember from our 3+ weeks in the hospital hearing the doctor say, "if he eats he goes home!"day after day during his rounds.  It took a long time for Henry to consistently eat even 2 ounces at each feeding time.

Another characteristic of babies with PWS is their low muscle tone. In my very minimal understanding, "low muscle tone" means that Henry's muscle fibers don't overlap like mine do, and because of that, his movements need to be almost exaggerated in order to get the same response out of his body that a small movement of mine would. And that just kind of slows everything down, like trying to lift and swing a bat that weighs 20 pounds. Even sucking is a large feat for babies with PWS. They are often sent home from the hospital with a G-Tube in their stomachs and are fed liquids through that for months before being able to suck and swallow well enough to gain weight by eating orally. While we are thankful that Henry never needed one, I try to remember that he has many friends in his PWS community who do.

Henry being "floppy" was just about the first thing anyone noticed about him when he was born.  It sounds cute, because of Peter Rabbit's sister (you know... flopsy...), but it isn't. Well, it is cute because it's a baby, but it's not cute because it's so unnatural. I recently held the one-month-old son of some sweet friends, and I. was. shocked at the way little Ashton held his head up and straightened his back when he was uncomfortable. I remember thinking, "oh so this is what it's supposed to feel like!"

So, what do we do to combat this low muscle tone? Well, for starters, lot's of physical therapy!

This is Niki. We met her through an organization in Greeley that connects families and children with special needs to specialists in all kinds of different types of therapy. She comes once a week and works with Henry for an hour on rolling, sitting up, tummy time and a number of other things. Today, we had a meeting with our case manager, something we do every three months to talk about whether or not Henry has met his "playtime goals" that we as a group had set for him at our previous meeting. The goals? Rolling over and reaching for a toy while on his tummy. Sounds easy, right?

At almost 10 months, Henry can sit up for about a minute by
 himself, less if he's being challenged to turn his head or raise
his hands.

If there's one thing I've learned from Henry's PWS, it's that it is a stinking miracle that ANY baby develops the way they're supposed to! Watching Henry struggle with things like raising his arms to eye level or looking from side to side while sitting up has put me in a state of complete awe when I see other babies do those things without even thinking about it. The steps it takes to roll over - all the muscles that have to be engaged for that one quick motion is incredible! Did you even know that when a baby rolls from their tummy to their back, that they are tucking their chin, pushing off with one leg, swinging up the other and contracting their abs and back muscles? All without really knowing what to do or how to do it. They just do! The first time Henry even attempted rolling off of his tummy (for a while there he would just lay limply on the floor like a rag doll!), he jerked his head back and gave a little twist, as if the leverage of his big, heavy brain would get him where he wanted to be. Now, after almost 7 months of P.T. with Niki, Henry can tuck, push, swing, and contract with the rest of them! Praise God!

As Henry grows, so will the list of things he'll need help doing. The organization that connected us with Niki will also connect us with Occupational Therapy, Speech Therapy, and any other services Henry might need as he develops! Maybe it's because I've never had a reason to until now, but I have never been more thankful for science and people who are interested in learning about the body when it works like it should, and who are brilliant enough to find a way to help when it doesn't.

A new adventure we will be starting with Henry on Monday is the daily administration of Growth Hormone! Some children with PWS are born with a deficiency of their body's natural Human Growth Hormone, and others aren't deficient, but need a little extra to get things going. In Henry's case, his body makes about half the amount of HGH as is usual in kids his age. In either case, though, administering HGH has been very successful in patients with Prader-Willi Syndrome! Not only will these treatments help strengthen Henry's low muscle tone, but it will also help him grow in height to the average level, make his veins less flimsy, and has even been shown to aid in cognitive ability as Henry gets older.  We are so excited about the effects adding this to our routine will have on Henry's development, and can't wait to see how he takes off after Monday! I remember the way my heart lurched and the careful way the Endocrinologist spoke when he said the word, "injection" together with the words, "you" and "do". But, like the countless other things we never thought we'd need to learn, this will soon become easy. Besides, the good that this one thing will do far outweighs my fear of doing it. 

If you have any specific questions about Prader-Willi syndrome or Henry's growth, please feel free to comment or message me! And you can always go to fpwr.org or pwsausa.org to find information from actual experts if you're into that. As always, thank you so much for following along, loving and supporting us as we walk along this road!

Why I Stopped Praying for a Miracle - My Prader-Willi Syndrome Story

The month of May is Prader-Willi Syndrome awareness month! Didn't know that? Me neither, until this year! So many moms in this new-found community of mine have been posting their stories to encourage others and help the people around them understand a little bit more about this condition that affects our lives everyday. I figured now's a good a time as any to really hone in my blogging skills by posting a bit more regularly this month about our journey so far and the things I've learned over the past *almost* 10 months. I'll start this experiment by writing a little about the very first lesson I was faced with almost as soon as Henry was diagnosed.

Now, don't get me wrong. I love praying for people. I love praying impossible things, and hearing about or seeing first-hand how God answers those prayers. And no, this doesn't mean that I'm never going to pray a miracle over someone ever again. God could even change my heart and tell me when to start praying for this miracle again. But for now, all I can tell you is that I understand.

I can't believe how tiny he looks in this photo!

When we got Henry's diagnosis, I was flooded with all of the worst kinds of emotions. I didn't want see him or hold him. There was even a fleeting moment when I thought and told my husband that I felt like we had "wasted" Henry's name. That lasted for about 2 seconds. Because when I actually did go over to his hospital crib and pick up that sweet, tiny little baby, I knew that there was absolutely nothing about this child that was a waste.

Yet, that night in bed, I prayed and PRAYED for a miracle. "I'm the knocking widow here... open the door. You told me I could do this. You told me if I prayed long enough, You would answer." I prayed that prayer every night for weeks.

Something I've learned in my study of God's word is that, as a Christian, everything I do should be done for the glory of God. Sure, you might recognize the wording from one particular verse, but what I've noticed is that this is a major theme throughout the Bible. And, after reading God explain His plans to Moses, Abraham, and the prophets, I've realized that one of the main purposes of those plans is to spread His name and glory throughout the nations. And, being the all-powerful, all-knowing God that He is, the things that bring Him the most glory are also what are best for us, what benefit us like no plan of ours ever could.

James took this soon after we got home.

So, in my still-small understanding, I started praying that Henry would be "healed", that his 15th chromosome would be made whole again for God's glory. In these new prayers, I promised that I would tell everyone I met that Henry had been healed and that, like Hannah in the Bible, I would dedicate Henry, his life and his story to spreading God's glory to everyone I met. It was then that I was faced with a question: What would actually bring God more glory? A long-gone story of healing, or an ongoing story of trust? If there's one thing I know about my wandering heart, it's that I am prone to take blessings for granted. After a while, a healing would just be "healed", and even that would turn into normal, everyday life. Trust, however, is built and sustained. I will NEVER take Henry to a doctor's appointment, or watch him in Physical Therapy and think that we've done this all on our own. I will never hear a man at the grocery store look at my baby and say, "That's a BIG one!" (yes, that actually happened), and not want to sing God's praises about how far He has brought us.

In those first weeks after the diagnosis, we shared with hundreds of people via social media not only about Henry's condition, but also about how we believed God would use it for His glory and our good,  and how we trusted Him no matter what. I was even used to share it with one of our nurses, a grief counsellor at the hospital and countless others after we got home.

That's why I've stopped praying for a miracle. I still pray that God's glory will be spread through our son and his life, but not that way. I believe that this story is still going, and I can't wait to watch it unfold.

Lord, continue to share this story of Your goodness and faithfulness through our family, and use us to spread Your glory throughout the earth. 

This big guy has been doing a lot of practice sitting up! I think he's getting the hang of it. Praise Jesus!

*I thought it best to add a little disclaimer here: I don't think it's wrong to pray for a miracle for our children. If you are the parent of a child with a disability, and you feel led to pray for healing, PRAY! If you've felt led by God to pray for healing for Henry, PRAY!  Listen to what the Spirit is leading you to do, and do it for His glory!