Healing Her Bones. Rett Syndrome and Osteoporosis

So ever since we got the diagnosis of Rett Syndrome 7 years ago I have been obsessed  concerned with Annie's bones.  I knew a sweet girl when I was going through junior high school that had Rett Syndrome (yes, I know, God's foreshadowing is astounding).  I remember how beautiful she was, in her chair, coming down the hallway, always with a smile, she had beautiful  hair and always the cutest clothes.  But I also saw how fragile she was, how thin and how....... fragile.

I've talked about Annie's bones before.  We have had Annie on bone supplements since she was diagnosed.  We've known girls with Rett Syndrome who have broken bones just transferring from the wheelchair and I was so determined to not allow that to happen to my Annie.

When Annie was about 2 years old she started to have some pretty severe digestive issues.  We put her on a GFCF (gluten free, casein free) diet.  Hoping that it would help with her digestive issues and cause her to gain some weight but it didn't.  She was loosing weight and was so tiny to begin with.  We actually started seeing a GI specialist and told him that we needed a g-tube.  He, of course, agreed.  It was the best thing we ever did for sweet Annie, she began to grow and thrive and was so much healthier than we could have ever imagined.

After the G-tube we tried to introduce some dairy back into our sweet girls diet but we found that she was incredibly sensitive to it.  She was able to tolerate cheese and ice cream but anything beyond that, milk or yogurt, she would throw right up.

Of course I continued to worry about her bones and upped her bone supplements.  We had annual blood draws that showed us that Annie's vitamin D level was normal.  That was great but Mothers instinct, I wasn't convinced so I started asking for Dexa Scans - which are bone scans that can detect osteoporosis.  Yep - found it!  Annie failed her first Dexa Scan and was diagnosed with osteopenia when she was just 5 years old.

We were told that Annie had osteopenia because she couldn't walk.  We were told to get her up on her feet at much as we could, weight bearing exercises build bones.  I wasn't convinced that this was only reason for the fragile bones.  We get Annie onto her feet as much as we could each day, usually for several hours, and she was still having issues.  I knew that this was an issue with malabsorption.

I started doing more research but came up empty.  I couldn't find the reason for her bones to be so brittle and it was so frustrating.  As the years and months ticked by Annie's Vitamin D levels started to climb, so much so that we need to decrease her Vitamin D supplements.  As we decreased her supplements her vitamin D levels continued to climb and her bones continued to deteriorate at a very alarming rate.

I talked to every specialist that we were with and made appointments with additional specialists.  I couldn't figure this out and neither could they.  I was told by some specialists to ignore it, by other that they didn't know what to do and others who had ideas of putting Annie on medications that would increase bone density but they were contraindicated for children and the side effects were bad.

I knew in my heart that her problem was she was not absorbing these nutrients, we were giving her enough calcium and vitamin D and vitamin K and Boron and magnesium and all the other vitamins and minerals that are essential to bone growth she just wasn't absorbing them.

I continued to search and research until one day an article came into my inbox.  The bottom line – vitamin K is the ‘key’ that unlocks the door from your bloodstream to let calcium flow into your bones and bone marrow.*  (mercola.com) Purely Godsent.  As I read through this article I learned that there were 3 forms of Vitamin K, K1, K2 and K3.  I was giving Annie vitamin K but not  K2!  So, we ended up taking her off all of her supplements, her blood levels were very high in vitamin D and her serum calcium was starting to rise so we had no choice.  We started Vitamin K2 (from Mercola.com) right before Christmas and by March our Vitamin D levels had plummeted from 91 to 60!   The Vitamin D sitting in her blood stream was now able to enter her bones!

We waited another month and decided to do another Dexa Scan.  Our results - not a continued decrease in bone density, like we had seen in years past, and not even a same Z-score as the year before but actually an improvement in Annie's bone density!!  Yes, you read that right, an improvement!!!

This momma is overjoyed!  Since then we have started a Vitamin D supplement again and Annie's serum Vitamin D levels are still within normal limits which means that her sweet little body was starved for Vitamin D but it had no way of entering her bones without the Vitamin K2.  Now that we have the K2 we are able to supplement with additional vitamins and minerals and will hopefully continue to turn this osteoporosis around until we have bones that are as strong as the typical 8 year old that she deserves to be.  Annie's Spine and Femur's are still pretty brittle so we are VERY cautious about breaking her hip.  I'm hoping that these 2 areas of her body just need a little more time and nutrients to build up their strength.

*Disclaimer:  Vitamin K2 worked for Annie but it may not be for every Rett Girl or child with osteoporosis.  Please check with your child's doctor before starting any vitamins or supplements.

Shattered, for a purpose

I have this water pitcher in my dining room.  People have asked me about it, not because it's such a beautiful piece but becasuse it's been completely shattered and then hot glue gunned back together.  Look at the pic below, I'm not talking just a missing piece but seriously, completely broken and then glued back together.

Of course the idea is not my own (I'm not that clever) but from a book by Angie Smith (who is just genious!) called Mended.  In this book Angie explains that her purpose for being "broken" by the things in her life are so that Jesus could shine through her life - thus the broken pitcher allowing light to shine through the cracks.  

This image hit me so hard that I just HAD to experience it for myself and so I went out, bought a VERY cheap pitcher (honestly, it was $3.50 on clearance because it already had a crack, Talk about irony.)

I spent an entire night smashing it and then glueing the whole thing back together (not an easy feat when you get to the small parts).  It was tedious but incredibly therapeutic.  It hasn't taken away all of my anger and saddness about what has happened to our family but I can say that it has put things in perspective and it is always there, sitting in our dining room as a consant reminder of what our family has been through and, more importantly, why.  

People see that pitcher and ask about it, I haven't really come up with a great answer yet, I have just said "it's a symbol of my life" but that explination doesn't do it justice because people say "Awww, I'm so sorry that your life feels like that".  They don't get it, I didn't explain it right.  

What this really shows is that my life was a complete pursuit of my own.  My own wealth, my own happiness, my own dreams, my own vision of life.  Somewhere, in my own pursuit of desperatly trying to create all of these dreams for myself God stepped in and smashed it all.  He opened my eyes to a marriage that was very one sided, parenthood that was full of false ideals, my image of how life is "supposed to be" and the so called solid rock that I stood on was nothing but sifting sand.   

God showed me, what really mattered.  I couldn't be more blessed that He stepped in when He did.  Each and every time He shattered my life He did it so that His light could shine through me.  Maybe not right away, but through the anger, the sadness and the tears all those pieces were picked up and glued back together and the cracks and spaces allowed His light to shine through.  What God breaks He puts back together stronger than it was before.  

By shattering my life with Rett Syndrome, my marriage has become stronger.  We no longer have false expectations of eachother.  I have come to an understand that my husband is not in charge of my soul happiness.  His and my own emotions of course will steer our family in certain directions but despite the difficulties and hardships that will come to us we choose to see that any hits to our family are not set backs but are additional chips and cracks in our pitcher.  My relationships have gotten stronger, my eyes are opened to what really matters now.  Could it be that each and every lesson that God wants us to learn comes to us in a form of brokenness?  These cracks and holes and even the shatters are part of how He is trying to use us.

A few weeks ago our church had a speaker that moved me even further on in my walk towards brokenness.  The message is below and I encourage you to listen to the whole thing through.  

I realize this message is intended to make those who are ready, able and called to MOVE into what God has called them to do, but for me, I believe it was a confirmation in my own walk, my own life and my own struggles that God is using my life and my family for His purpose.  

I live in a place where I see people struggle all the time.  It breaks my heart when I see a real struggle - a family who realizes they have a child with Rett Syndrome - a child they thought was perfect and whole and then to come to the reality that they will have to care for every single need of this child for the rest of their life.  A friend who's husband has gone into cardiac arrest and they worry about their families well being and future.  Other families break apart in divorce, the moms are now called to be both the father and the mother.  Cancer diagnosis, infertility, the death of loved ones and the list goes on.

When we open ourselves up to the world, when we make ourselves vulnerable to what is around us,  it's amazing what we see. There is so much desperation and sadness in our world.  When you flip on the news or check your inbox or even just turn on the radio you are sure to be hit with a bunch of depressing, sad news.  Life is sad, it's not fair, and there are always negative things to dwell on.

We have a choice to walk through this world as broken pieces laying around or we can choose to use our faith as the glue that puts our pitcher back together.  You can see those who choose the broken pieces, those who choose to complain about their circumstances, those who allow even simple misunderstanding to destroy their marriage or common colds to rock their lives.  And the mended pitchers who deal with far worse circumstances but hang onto hope and forever have their heads held high in Gods grace.

The choice is ours.  We can strive to live that perfect, easy, comfortable life.  Daily chasing after the bigger house, the nicer car, the larger income, the designer bag.  Or we can choose to trust in the one who made us.  The one who allows for heartaches so we can show His love.  The One that brings the rain because that's the only way we will see the flowers.  The One who is using us because He knows this life is just a fleeting moment and our real treasures are waiting for us in heaven.

Of course when the rains hit there is a time of sorrow, of adjustment, of questioning but to be able to pick yourself up and be used is what this life is all about.  Even with the struggles, this life is so much more than we deserve.  I'm trying to get to a consistent place where I am no longer chasing after anything in this world,  where I'm not trying to fix everything to make my life perfect, I want to get to a place where when life gets too easy I wonder, "Has God decided not to use me anymore"?  A place where I embrace the hardships because I know that they are there for His purpose.  

“Life can only be understood backwards; but it must be lived forwards.” - Soren Kierkegaard