I’ve been traveling back and forth between Dallas and Colorado: I’ve had the chance to receive a lot of updates about family and friends from my parents, and it reminded me that we need to provide an update as well.
In short, our family entered a period of transition in late May. For context, my career is spent in corporate development which involves determining how companies grow which involves buying and selling other companies. In May my current employer announced it was being sold to another company. While I was involved with coordinating the sale, I have decided to not go with the acquiring company. We have instead made it our goal to try to make a transition home to Colorado. So we have spent the recent past focused on trying to get home and closer to family.
We are motivated to be at home due to the past three years and more for future developments in our family dynamic. Claire’s recovery continues to change and additional hurdles have been presented. First, Claire has developed spinal scoliosis. Claire is a growing girl. Her skeletal structure continues to expand, yet the muscles to support her bones remain untested and weak. Tools like the stander focus on bones density. The stander is also a great tool because it’s a passive instrument: we can place Claire in the stander for a prolonged period of time and monitor her comfort level while gravity does the work. Working muscle strength and endurance requires active attention (despite such late-night infomercial promises from electrical stimulation ab belts). Horse, occupational, oral and physical therapy all focus on stimulating muscle tone; however, there is a limit on the time Claire can sustain. And at the end of the day, Claire’s bones have grown faster and her muscles can’t keep up.
The result has been a case of scoliosis. Some of Claire’s vertebrae have pivoted causing her left rib cage to distend. She will have to have some vertebrae fused to correct. We will start monitoring her pulmonary function to make sure her breathing isn’t labored. We will not proceed with the surgery unless complications or health risks associated with the scoliosis arise. Since she is sill growing, we’d like to avoid a surgery like spinal fusion as long as possible.
We also learned of additional orthopedic issues. Claire has been more spastic on her right side than her left. This has contributed to some problems with her right hip joint. The socket at the hip which holds the top of her femur has become loose and the opportunity for her right femur to become disjointed has presented itself. She is not in pain; however, this has limited her ability to bear weight. The solution is another surgery where the doctor will remove a piece of bone from the femur to build up the hip socket, keeping the bone from slipping out. Like the scoliosis surgery, we are waiting and doing what we can to stabilize the joint. This includes a medieval looking brace for her legs and hips. Claire doesn’t like it. We don’t either.
Other than this disconcerting news, Claire is doing well. She took a break from horse therapy through the summer and returned a couple weeks ago when temperatures were more moderate. We’ve seen improved strength from the therapy and Claire has impressed us with her head control of recent. We’re all proud of her and never tire of her smiles.
Autumn and Heidi have been in school for a little over a month now. Autumn is playing another season of soccer while Heidi is preparing for her first eligible participation in the Nutcracker ballet. They continue to pamper their little sister and make her feel included.
On the whole we’re doing well as a family. Transition periods always take their toll; nevertheless, we remain positive and vigilant for a move back home to Colorado.
16 thoughts on “Update: Tuesday, 24 September 2013”
Even though we are strangers, I often think of Claire and your family. The dynamics of Claire continuing to get older and your daughters… how they care for her as sisters. LIfe goes on. Your words are just so poignant… life goes on. I too, had scoliosis as a young girl. It required three different spinal surgeries, so I know how all that goes. Braces, casts, surgeries. I hope that Claire receives exactly what is right for her situation. You are still in my prayers.
As usual, it’s so good to hear from you concerning Claire, Heidi, and Autumn. This time, it was even more special with the news that you’re moving to Colorado to be closer to family. That sounds like a win-win situation for all of you! Know your parents and other relatives nearby will be delighted. I’m hoping Claire’s growing problems will eventually be under control with the right surgeries and follow-up therapies to help her bones correct themselves and her muscles become stronger. I’m sure the processes will seem long, but if any family can make it work, it’s yours!! Take good care of yourselves as well and keep us posted about the move. It’s interesting that the state you’re moving to is also in a healing mode following the recent devastating wildfires — together, you can find new paths and always a better future. Good luck in all that you do, and please write again soon!
Tyler and family, you’re still in our prayers. Your journey has been our journey with JD Hartman (our nephew). You’re doing an excellent job. If I can help in your Colorado job search let me know.
So good to hear from you today. I was praying for “little Claire” (how we have called her in our home to differentiate from another Claire) just yesterday morning and wondered how she had progressed. I’m thankful for the good things happening to help counter that which is more difficult. I will continue to ask for healing and grace with all the possible surgeries to come. My daughter has scoliosis which has so far been stable–I know she’ll take this news to heart as my girls have been concerned and prayed for your family over the years. So glad you’re moving closer to loved ones. Keep the updates coming of how we can pray.
Wishing you the best in your move home to CO. I love that State so I hope you are very happy there. We continue to pray for Claire and your family every night. Thank you for the update. Wishing you peace and a successful move. God bless.
Prayers as always for your brave little girl. She is always in our prayers at bedtime. Thank you for the update. So glad you will be able to be closer to family.
May God Bless and keep you all!! You must be an awesome family!!! Prayers for each one of you that your needs will be met.
Tyler, Thank you for this update. Claire is in my nightly prayers. I’m so happy to hear you are working toward a move to CO to be closer to family. I will come by before you and Michael leave. Long overdue.
Hi Tyler – thanks as always for the update. I know you and I played a mad game of phone tag a few weeks back. Great to hear that you are looking to make a return to CO to be close to your family. If there is anything that we can do to assist that transition, please do not hesitate to let us know. Looking forward to re-connecting upon your return.
Dear Tyler and Tiffany:
Thank you so very much for this update on Claire. We’d been wondering how she was doing. I hadn’t had an update from my sister in quite a while; but I received this one from a friend in New York state.
We pray that all of Claire’s needs will be successfully met; and she will be returned to full health.
Thank you, again, for this update on Claire.
Ken & Jana Kirkpatrick
Jesup, GA 31545
Hi everyone, just wanted to let you know. I have been taking Rebecca to an Osteopathic Doctor Who specializes in treating children She does whats called deep tissue manipulation. Rebecca has scoliosis because of her rapid growth and The Dr.has helped her tremendously.There is an Osteopathic Dr. In Dallas named Dr. Speece the’re #is1(214)321-2673 add:10534Garland Road Suite B Dallas Tx 75218 fax (214)321- 4329 They are a perfect alternative to surgery. My in-laws have recomended Dr. Speece to us we see them(father and daughter) when we come to visit. We also have our own dr. In Ca.You can always research Osteopathic Doctors specify in children and do deep tissue manipulation to ease your mind. My thoughts and prayers are being sent your way. God Bless. Love to everyone. Aunt Donna
Thank you, as always, for an update on your precious family and sweet Claire. You continue to be in my heart and thoughts… I’m excited for your family as you look forward to a move “home” and will pray the process goes smoothly and as easy as possible. Love, Laura Rhea
I am a stranger to you but became aware of Claire soon after this blog began. She and your family have a permanent spot on my prayer list. May God continue to bless you all.
Tyler & Tiffany, Claire’s story has always been on my heart from the first day I heard your story. Little did I know a matter of months later that I would become a Grandmother to a baby diagnosed with Krabbe disease. This was earth shattering news to my daughter & our family as a whole. You guys have been our inspiration through our ordeal. You will always been in our prayers.
I was thinking of your daughter today.
Hope all is well with you all.
my name is Mary. I’ve been following your emails for years, since the accident and Eddika made me aware. I just want to say that my niece has a daughter with CP since birth and she does these special therapies and massages, her daughter is 7 now and is developing physically. Mentally it is a struggle. I would love for you to get in touch with her and she may be a good sores of information for Claire’s rehabilitation. please let me know if you are interested in some help with Claire and I will put you in touch with her. I can’t bare the fact that this child is going through so much surgery and it may not be necessary. my grand niece has never had any of Claire’s treatments and she is growing and thriving. please contact me. my email address is firstname.lastname@example.org