OT- Please join me in praying for DD8!!

[Mom2Monkeys]

Here's a copy of the email I've sent to our church family...

I would ask that you pray on behalf of my daughter, Kyber. She is 8-years-old and has Osteogenesis Imperfecta, better known as Brittle Bone Disease. It's a collagen disorder (collagen is the "glue" that holds your bones together and is a vital part in many other areas like skin, vessels, and connective tissues). We have been blessed in that it is a very mild case. She has had very few fractures, minor hearing loss, and beyond her hyper flexibility and thin skin, she is really rather healthy! At her last bone density screening, she had improved to the low-normal range (the year before, it was mild osteopenia, which is just a step above osteoporosis).

One of the fractures she has had was in her spine, and recently she started having some back pain. Today, she also fell and hurt her leg pretty badly so we went to get x-rays to check on both. He leg simply has deep tissue damage and swelling, no fracture. But, in her back, there is wedging in some of the vertebrae and very obvious osteopenia througout her spinal column. So, not fractures, but some damage.

As you can imagine, there are changes to be made for her now. She has been able to do anything other kids are allowed to do. Sports, rough house with her brothers, jump on the trampoline (that we just got for Christmas), and just be an active kid. She was about to start Ju Juitsu with Konor and was very excited and I almost put her in Upward soccer, but wanted the back x-rays first. My mommy heart wants her to have a normal life! I don't want to make her feel "sick" or "weak" by not letting her do anything. I want her to be able to play, to have her own "thing" like her brothers and other kids will. I wonder if she'll always be dealing with back pain? Will she be able to have a normal life at all?! Osteogenesis Imperfecta is known to have a "peak"-- it's like a bell curve. It's there, but mild or nearly unnoticable. Then it starts to worsen and the bones weaken and more fractures occur. Then eventually, is slows down and possibly goes completely away. I'm worried that this could be the beginning of her "peak".

We will be seeing her specialist as well as getting another bone density screening. Any sign of increasing spinal fractures and they will start her on IV treatments with Pamidronate, which is still somewhat experimental for children. Although it improves weak bones, it turns good bone into more of a chalk like substance. I'm not certain how long it will take to get an appt...it's at AR Children's Hosp, and it can take months sometimes.

[1GirlTwinBoys]

So sorry to read this about your DD. Will definitely keep her in prayer.

[DHT1999]

Oh, Tamara! My heart goes out to you and your little sweetie. I'm so sorry to hear about this. I will be in prayer for you and her. I lived with chronic back pain for a long, long time. Close to 20 years all together. It was horrible. I will be in deep prayer that your daughter is spared that burden. I never thought I'd see the day when I'd live without pain but I prayed anyways, sometimes not even having the faith to believe that God would change my situation, but He did, in spite of my weak faith.

Praying,
Donna T.

[juliekay]

Praying!

[aprilmd]

Tamara,

We are already praying and will continue!!!!

April

[rainbowacreshs]

Lifting you and your family in prayer.

[momofgreatones]

So sorry for your daughter's struggles right now. We will pray for her.

Monique

[SoaringEagle]

I will pray

[mamayi]

Praying for your daughter and your family

[Mom4Him]

Sending prayers & HUGS!

[happy@home]

Praying for your daughter!

[water2wine]

Praying for your daughter and for your family. I can only imagine how hard this is to deal with as a mom. My heart goes out to you.

[Mom2Monkeys]

DD's specialist was heavily booked until the end of July. I was able to get us in March 9th! And on top of that, his clinic was at the very large, hard to park at, hard to find your way around Children's hospital. Now, it's moved 5 min. down the road from my house in a small little plaza making toting my 4 littles much easier!

[2littlemisses]

Tamara, you have been on my mind and know that you will continue to be in my families prayers. What a blessing to have the clinic so close to you now. The LORD knows what you need and HE will provide!

[mamanlait]

Tamara,
Your email brought tears to my eyes. My dd8 also struggles with a collagen disorder (not the same, though) and I know the burden we as mother's carry for our children. So many times, I try to put the fears aside for my dd but they seep back to the surface when something medical or physical pops up suddenly. I know that sinking feeling. I will be joining in with the other families and praying for your dear child and for you, that God will bring you immeasurable strength and calm as you work your way through the clinics and specialists to get care for you daughter. That her pain will be minimized by the Lord.

The LORD is good and sustains us. He can calm our heart and bring us peace. Please let us know how things go! It is wonderful to see the might workings of God's hand.

Prayerfully,
Amy

dd8 (Bigger)
dd5 (LHFHG...started today)