The Joy of the Lord is Your Strength

It has been far too long since our last update! Here you go.

O has been having a great time with physical therapy the last couple of months! It is making her more and more confident which is making her stronger. Each week we alternate from pool (it has a floor that raises and lowers to change its depth for each child's need) to land therapy.

She started out clinging to Ms Emily (her therapist) and now she is walking all over the pool. She is confidently walking in 2 ft of water, which hits her at about her shoulders. She is jumping in to Ms Emily from the side of the pool, learning the basics of the doggy paddle, and we are working on the back float (she is still clinging on for dear life on that one). On the ground, she is walking up and down half-size stairs with railings all by herself. With assistance, she is walking a balance beam. She is strengthening her balance to be able to balance on one leg (not quite there yet). Because of the weekly therapy she is gaining confidence at home too. Just a few weeks ago, she was asking for help to walk around the back yard. Now I am sending her outside with her friends to play and she is walking all over the yard by herself.

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She is making some pretty cute observations these days (almost 3 yr old!) like "Daddy calls you babe" and "actually, I don't like this one, I like that one". She has been such a wonderful baby/toddler and I can already tell that 3 is going to be a lot of fun! Just recently she has been talking a lot more, telling stories, and making us laugh. She will go one for a good 10 minutes, changing the subject a few times. While Robert and I were dating, we meet with some friends who then had a 3 year old. They told us that "if you want to understand the mind of a woman, listen to a 3 year old". They have no restraint over their thoughts. They just all come out.

Her imagination is awesome too. Her cousin was in town over the weekend and they were playing beauty parlor.

She fills our lives with so much laughter and joy. 

Physical Therapy

We are now in full swing with physical therapy. Liv is really doing great, in both the pool and on land - we have been alternating for a couple of weeks now. She has been having fun with all kinds of activities that are making her stronger and more confident to try new things all by herself. There she confidently walks up and down stairs all by herself - with the use of railings on both sides that she can reach - walks balance beams, one foot in front of the other - with a hand for assistance - plays with all kinds of "new" puzzles, balls, and a wall filled with a "her-size" wooden kitchen with food and dishes in every drawer, door, and on every shelf. It has become a fun weekly trip.

We sadly moved our favorite tiny cousin and her mom and dad to Des Moines (happily helped they unload boxes and share their few first meals in their new home.) We will greatly miss them being here, but we are so glad they are close enough for what will hopefully turn into frequent weekend visits!

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.

"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.

 

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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 :)