Twenty-twelve

Looking back at 2012, it was full of unanswered questions, as well as many questions answered, uncertainty and tears, as well as security and a greater joy that remains. I am so thankful to our God who remains faithful regardless of our circumstances. He who has begun a good work in us will continue until it is completed (Phil. 1:6).

In 2013, I'm looking forward to falling more in love with Jesus, more in love with my husband, for more opportunities to grow in faith and for more ministry opportunities, and watching our daughter grow in strength and in truth.

Letter to our friends and family

Here is a letter we sent out recently to update some of our friends and family about our daughters' health:

Dear family and friends,

We appreciate all of your words of encouragement and your prayers over the past few weeks. You all have been such a blessing to us. In this email, we intend to explain what we have learned about O's health. Feel free to reply with any questions or concerns and we will do our best to answer them.

For all of 2012, we have been asking about O's delayed walking, but it wasn't until she fractured her femur in early October that brought the x-ray that showed the orthopedic surgeon at Children's Mercy an abnormality in her bones. From that we were referred to specialists in endocrine and nephrology. After seeing these specialists and several labs, she was diagnosed with a rare bone disease called hypophosphatasia. We were referred on to Shriner's Hospital in St Louis where we spent the second week of December in their Research Center. They admitted O for a 5 day study on diet and metabolism to see exactly how the disease was affecting her and how we could best help her. We had the best experience we possibly could at Shriner's. Every nurse, doctor, volunteer was there to serve us, love us, and help us. Many of them have been studying this disease from several years and have taught us so much about it.

This is what we know: the outside of her bones are strong but her body is telling nutrients like calcium NOT to go to the inside of the bones, which keeps her bones soft and weak, which in turn have kept her leg muscles weak. Childhood hypophosphatasia is not progressive or fatal. Some of the common symptoms are getting tired easily, losing baby teeth and some pain, similar to growing pains. One of the issues is that her body does not produce the enzyme alkaline phosphate. When Alkaline Phosphate and Calcium combine they help the bone "mineralize" or harden.

Prayer requests:- Complete healing and restoration of her bones- That her body begins producing Alkaline Phosphate- That we would have the wisdom of how to prayer and best help her- That we would not lose sight of God's provision right now during this life change

To our family: Please feel free to forward this on to other family members. We would love for everyone to know what is going on but do not have everyone's email.

Everyone: please continue praying with us. We've included some of our prayer requests.

There is a drug that they are currently using in clinical trials that is making kids bones stronger, but it is only available right now in clinical trials. The team at Shriner's has helped us know how to help O through diet and exercise to help her feel better and get some additional strength until that drug would come available to her. It would be that either she would be added to an new clinical trial or that the drug would become FDA approved and could be prescribed to her. Until then, her bones could be susceptible to more fractures. We will be participating in some physical therapy and aqua therapy through Children's Mercy to help her build up her strength and weight. We also learned from the team at Shriner's that her low weight has most likely been from this disease as well. It is common in children's with hypophosphatasia because instead of calcium being absorbed in the bones, there is too much in the blood, which can cause nausea and/or too much in the urine which can cause burning or irritation. Regulating her calcium will help her want to eat more and will then gain weight more quickly, and encouraging exercise that strengthens her leg muscles will give her the confidence to walk more and more unassisted.

I guess that is all for now. Thank you for your prayers. We are full of hope. We trust that God is already at work in her body.

Love,Robert and Susan

With the knowledge we have learned from the team of specialists at Shriners, it has answered so many of the questions that we have had over the last year. She is already eating so differently.

"by Whose stripes you were healed" 1 Peter 2:24

Since our last blog, we have visited two specialists at Children's Mercy. One of the blood tests came back positive for a rare bone disease and they have referred us on the Shriner's Hospital in St. Louis for a diet and metabolism study to better help us know how to help little miss O. Keep praying with us. We believe that our great God still heals today, just as we read about in His Word. We are confident in His healing, His provision, and His protection. We know that great testimonies will come from this, and that God will continue to show Himself mighty. We look forward to the opportunities ahead to be a light and hope for the people that we cross paths with and that lives will be changed by the love and healing power of Jesus!

O is getting stronger and more adventurous every day. She is back on her feet cruising around since her cast came off at the beginning of November. Most recently, she has been asking to walk beside me.

Getting more confident on her feet since the cast came off

Ready to head to Texas for a full house of family at Thanksgiving

Fun with the curious mirrors at Children's Mercy

Just beginning to learn about the wonder of that first Christmas morning

Just plain cute

Checking out her bed for the week (at Shriners)

Bigger, Stronger, Smarter

Sweets is eating a lot better since the cast came off. She had actually gained weight rather that losing it while the cast was on. Since the cast has been off, she is continuing to gain weight well. 

She has been crawling around the house since the day after the cast came off, and yesterday she had built enough strength back up to pull up to a stand and even walk a bit with help! 

We met to see a wonderful specialist yesterday. She is reviewing Sweets' labs and x-rays and had a few new insights for us. We will gain a little more knowledge after our appointment with another specialist this coming Monday that we have heard great things about. So far almost all of her labs are looking good! That means doctors are narrowing down what they think might be going on.

While waiting to see the doctor, we looked out the 6th floor window spotting school buses, city buses, people walking, and dogs!

Just yesterday, Sweets pushed a chair up to the kitchen sink, crawled up and was reaching to turn on the water. Turn your head for one minute.... She's obviously getting her strength back.

She has been saying a lot of stuff lately that have us wondering

"How does she know how to say all that?"

And she's been singing a lot too. 

"Tinkle Tinkle lil-le stars, how I wonder what you are, up a world so high, like a diamond in the sky." 

Knowing her ABC's and 123's.

So cute.

Cast off day!

Today, we went to Children's Mercy to get the cast off! The x-ray looked great.

 

 We went to the lab for some labs for a specialist we will see in two weeks. Sweets is a happy girl, ten pounds lighter, and a little bit more mobile. She's may be a bit stiff and sore for a few days, but soon she'll be cruising.

 

.

On the move!

Two and a half weeks in and this girl is really on the move. She's army crawling with a cast at least half her weight. She's pushing herself from laying down up to sitting and today she rolled over to her belly! She's gonna have some serious abs and biceps. Less than two weeks left!

Our First Emergency Room Visit

Nobody loves an emergency room visit. Now we know why personally. Last week we had to go to Children's Mercy because Sweets fell at the park and fractured her left femur (thigh bone). They kept us overnight so they could put a Spica cast on her (which has to been done in the operating room with a live x-ray to make sure the bone stays in place.) It is a typical casting for a femur brake in young children. The procedure was a success and Sweets recovered great. Children are so resilient and adaptable. Sweets is handling this all very well and already trying to figure out how to move in the cast.

On Tuesday, we followed up with the Orthopedic. The bone is healing well and she will only have to stay in the cast 4 weeks (rather than the 6 they thought originally). After the cast is removed we will follow up with a few specialists because of something the Orthopedic saw in her x-ray. (Many of you know we've been seeking medical advice about her delayed walking.) We will keep updating here as she's healing. We are confident the Lord will take care of us. (Psalm 112:7). We appreciate prayers for a quick recovery.

P.S. I am not a blogger so we'll see how this blogging goes :)