We still miss you just as much!

For those of you who don't already know, 2009 and 2010 were both full of excitement and full of sadness. Robert and I were engaged on Christmas of 2008. While we were planning a September 2009 wedding, we toured Israel with our church that March. We planned and participated in a wonderful missions trip to Malawi, Africa in June. We bought a house in August. We celebrated with 740+ of our closest family and friends. Feeding them all in less than an hour due to my dad's amazing organization skills. It was a beautiful celebration of the love of Christ and the gift of love He gave us to give to each other. That Thanksgiving we were telling our families that we were expecting. That Christmas, it had only been one year since we had been engaged. In February of 2010, we had a sonogram that confirmed we were having a girl. The following Sunday, on my desk in the church office, I found a framed photo of our daughter that said, "love at first sight", a gift from my dad.

On March 11, 2010, my dad passed away suddenly. Today, we miss him just as much. We know that he is celebrating eternal life without anymore pain or sadness with our Lord and Savior Jesus. The only things that make it "easier" is remembering his life here and knowing that we will see him again.

Snow days

She wasn't sure at first that she wanted to go outside in the cold.

This is the first time she was actually old enough to think of asking to play outside in the snow.

She loved warming up with a good bowl of chicken noodle soup. In her own words, "dad made it" but "mom made it good". She also had her first taste of hot chocolate (as far as I know.)

We made our first snowman and stopped to listen to the train going by in the distance.

Raising food lovers... physically and spiritually

I am doing a lot of searching online and in stores for food and drink items LOW in calcium and Vitamin D. Everything is calcium and Vit D fortified! I am enjoying coming up with healthy delicious meals for our daughter. It brings me joy to see her enjoying food so much more now.

My husband and I are food lover's. He once actually cried over a Cheesecake Factory Banana Cream Cheesecake. And we have had passionate conversations about food countless times. I love preparing meals and it brings me joy when anyone enjoys one I have made.

Sweets stood on the big kid scale at the doctors for the first time. Before this she wasn't able to stand long enough to get her weight. We've always used the baby scale. In 2 years, she has gained a total of 7 lbs. In the past 2 1/2 months, she's gained 2 of those pounds.

Even more importantly than growing to love food for her physical growth and development, we desire to teach her a love for the Word of God. One of my favorite childhood memories was reading the Bible story about wise King Solomon and the mother who lost her baby in the night and took another mother's baby. In searching for a good children's Bible, I came across this helpful blog post: Toddler Bibles Reviewed

Happy Plate, Happy Momma

When it comes to eating, I am so happy to finally hear the words, "I want some more, momma." We never heard that before our trip to Shriner's. Gaining some more weight, along with simple exercises with play will help O get stronger and more confident with walking. She has already been standing for much longer periods than she ever did before her fracture, and she almost always chooses walking over being carried.

Our first week of potty training was a success. A few minor accidents, but nothing major. We've always said we had an easy baby and this proves it again.

Successful Potty Training Weekend

This has been a lot more fun than I thought it would be. It is such a joy to watch my daughter grow, and learn, and get excited about her accomplishments. Those sweet moments when time seems to stop and she is telling me a story or singing a song, while waiting to "go".... I love those moments. 

I have not followed it to a T, but I used a lot of the ideas this mom used:

Potty-Training-Part-1

We are not done yet, but we are a lot more far along than I thought we would be.

There was a song CarrieSueMist made up in high school that I have been singing to O this weekend. Day 2, she had already started singing it all by herself. Robert says, "You guys need to finish that song! Write some verses to it."

I gotta go pee pee, I do, I do

I gotta go pee pee

I gotta go, go, go

I gotta GO... GO

(I couldn't figure out how to rotate it, but it's still cute)

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.