Kadence has just had her first official post surgery follow-up with Dr. Belaire at Shriner’s, Salt Lake City. All were thrilled with her progress and the new look. She has gained over 1” in height, her shoulders are nearly straight and the curve in her neck is considerably reduced. She is still a bit stiff which is to be expected but Dr. Belaire said that she can gradually begin the process of “normalizing” her movement – bending at the waist, turning her head, etc. Kadence is most thrilled that she got permission from the doctor to use a regular backpack at school in the fall as she was not at all thrilled about the prospect of a rolling backpack.

We were very interested in the comparative x-rays that we got this trip.

In comparing these two pictures, the reduced curve at her neck allows her head to rest at a more normal position.

The following pictures show the improvement in the curve in her thoracic region. Dr. Belaire was happy to report a 25% improvement in the curve.

At this point, Kadence is to continue her recovery with limited activity and movement. She can swim, ride a bike, hike etc. We see the doctor again in 4 months after which, assuming all goes according to plan, she will be able to resume normal kid activities.

Thanks again to all for your support and prayers. We will likely be “signing off” the blog as we fully expect Kadence to resume a normal childhood. She will, however, continue to be a Shriner’s patient until she is 21.

Kadence got out of surgery around 5pm on Monday after a 7 hour surgery to remove magic rods, install permanent rods to fuse her spine and improve posture. She spent 4 days in the hospital after which she was released to recover for 3 nights in a local Airbnb – home on Monday!

Dr. Bellaire was able to safely improve her kyphosis by about 10-15 degrees. She would have loved to be able to do more however, as her deformity was greater than expected, the risk of paralysis forced her decision. She was able to straighten her shoulders and strengthen/fuse the rest of her spine through the placement of the permanent rods. On balance (considering the complexity of Kadence’s condition) everyone is very happy with the outcome and with Kadence’s resilience in recovery.

As we are now in the Airbnb in SLC, she is managing her pain with a very rigid medication schedule. This has allowed her to shower, sit up, walk around and sleep – all of which add to her recovery. We fully expect her to improve rapidly once she is back home.

We come to SLC in one month for follow-up and x-rays which we are excited to see. After that visit, assuming all goes well, Kadence will see Dr. Bellaire every 6 months until she is 21.

We appreciate more than words can say the doctors and staff of Shriner’s and Primary Children’s Hospital. And thanks to all our friends and family who have consistently prayed for and supported us in this long journey. We are grateful, however, that the surgeries are behind us.

We will update and post more pictures after surgical follow-up visit.

After eight years of trips to Salt Lake City Shriner’s Hospital, including 7 weeks of traction two rod surgeries and countless rod extensions, it appears that we are ready for the final surgery – spinal fusion. All previous treatments have been leading to this outcome which barring complications will be the end of surgeries for Kadence. This one will involve removing the rods with attached screws and clips and inserting permanent screws and rods on either side of most of her thoracic vertebrae. Dr. Belaire was so thorough in explaining the surgery and expected recovery but the following animation shows basically what will happen.

Because Kadence’s condition is more complicated than the one shown (kyphosis and a few deformed vertebrae), the outcome will be somewhat different. Dr. Belaire’s goal is to straighten what she can, trying to reduce the kyphosis, straighten her shoulders and allow her head to rest at a more normal position. In the end she will have 22-24 screws in her spine.

She will need at least six months of limited activity to recover but after that time she will be free to engage in many of the activities she has been denied during the nearly five years of rods. She has her mind set on skate boarding with her friends. 🥰

The plan at this time is for Katelyn, Lee and Kadence to arrive in Salt Lake City on May 17 for the Monday, May 19 surgery. Lee will stay through the next couple of days and he and Katelyn will stay in the hospital with Kadence. Jayden will be in Mesa with Mimi and Papa. Lee will go back to the Valley on Wednesday or Thursday and Mimi will come up to help with the trip home. Kadence is expected to get out of the hospital on Friday or Saturday and will recover in an AirBNB until the trip home on Monday.

While we all are a bit nervous about it all, we are confident in our surgical team, the support of the Shriner’s staff and Katelyn’s project management skills.

We continue to be profoundly grateful to all the medical and support staff as well our family and friends – for your kind thoughts and prayers. We will keep you posted. ❤️❤️

As has happened frequently, we went to Salt Lake City with one plan in mind (see last entry) and came home with another. 😏

The doctor we have had from the beginning and through all of the surgeries has left Shriners for private pediatric orthopedic practice in SLC. While we would have liked to stay with him, the Burner insurance plan would not cover the costs which would have been significant. So we stay with Shriner’s which actually makes our lives much simpler.

At Shriner’s we met our new surgeon Laura Bellaire whom we liked very much. She spent quite a bit of time talking to us and explaining the challenges with Kadence’s condition, the benefits/risks of medical options and her opinion for moving forward with treatment.

So….. Dr. Heflin’s plan (halo and spinal fusion) was contingent upon whether or not they could extend the rods this trip. They were able to move them a bit which means that the rods are still intact but she is just not growing a lot right now. As long as the rods are functioning correctly, Dr. Bellaire is of the opinion that we should leave them in place both to stabilize her spine and to allow for continued growth in her thoracic region. Right now her thoracic region ( and consequent lung capacity) are just below the threshold for “normal”. Dr. Bellaire indicated that Kadence would likely function well at that capacity but more would be better – even if it is a small amount.

The new plan:

• Rod extensions every four months rather than two. Hopefully she will have a growth spurt as she enters puberty and they will be able to further expand her thoracic/lung capacity.
• X-rays every six months to monitor the curve and plan accordingly.
• Maybe halo – as Dr. Bellaire is not convinced it will be necessary or beneficial.
• Remove rods and insert spinal fusion rods. We are hopeful that this will be done next spring (2025) so that she can get a full year of growth and extensions.

This has involved a bit of a shift in our thinking as we were expecting a much longer stay in SLC this summer but as Dr. Bellaire explained, this seems like the right option. We continue to appreciate the care we get with all the Shriner’s staff and from our family/friends.

So it has been a while since our last post. That is because we have not had much to report. Our routine has involved trips to SLC every 8-10 weeks for extensions of the magic rods. Three days travel for a 30 minute appointment while somewhat time consuming is relatively boring. Now we have some news!

According to Dr. Heflin, Kadence has maximized the benefit of the magic rods. This could be for any one or combination of the following: 1) She is not growing (in her thoracic region) and there is nowhere for them to extend, 2) The rods are “stuck” and will not extend beyond the present length 3) The kyphosis (hump in her spine) is interfering with the extension of the rods which are designed to work in a straight line rather that around the protuberance that is caused by the kyphosis.

In any case, Dr. Heflin says that it is time to move on to the final stage of her surgical intervention. The plan is this:

• We go back to SLC in January for extension, x-rays and planning for next surgery.
• Mid-May they remove the rods, do a CT scan and put her back in halo to pull out the kyphosis. She will be in traction (same as 2020) for about three weeks during which they will pull out the kyphosis and she will gain about two inches in height.
• After halo, she will have what we hope will be her final surgery in which they will remove the halo and insert rods on either side of the deformed vertebrae in her spine. These rods will likely be permanent and over time, the affected vertebrae will fuse together.

While the logistics of planning this are always challenging and the surgeries will be difficult, we are very encouraged because, according to Dr. Heflin, after the spinal fusion surgery, Kadence will be able to ”be a kid again”. i.e. jump on trampoline, ride a bike, roller blade etc without having to worry about breaking one of the rods. She will continue to be monitored by Dr. Heflin/Shriners until she is 18.

As always, we cannot end a post without expressing our gratitude to the Shriner’s organization, Dr. Heflin and his associates and to all of you for your support and prayers. We will keep you posted.

Kadence has new rods! After 8 extensions and total growth of just over one inch, Kadence graduated to the next size rods. Surgery was on Thursday and according to Dr. Heflin went just as expected. He did have to redo the screws at the base of the rods but was able to use the same clips which are attached to her upper ribs on either side of her spine. This surgery was not quite as invasive as he was able to use the same ”channel” for the rods themselves… less soft tissue damage. He also removed part of the clips which will be more comfortable for her as the previous ones were beginning to cause some discomfort.

Though she was pretty uncomfortable on surgery day due to back spasms, she was able to get up and walk a bit by the end of the day. On day two she is off IV fluids and on IV pain meds only. She has been sitting up and walking with just a bit of help. We expect her to be released from the hospital by Saturday, a day of rest at Airbnb in town and the home on Monday. Overall, this has been much easier than the first rod surgery.

The next hurdle will be getting her back into school. Because she cannot sit for long periods of time, she will need accommodation. We are confident that the staff at her school will be most cooperative. In the meantime, Kadence will keep up with her friends via Facetime ( which is the most critical aspect of the whole thing to “Miss Congeniality”)

As always, we are grateful to the staff of Shriners, Intermountain Children’s Primary and to all of you for your support and prayers.

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After eight extensions in 18 months, Kadence has outgrown her current rods and will have new ones put in on March 31. If our luck holds she will have the current rods for two years with extensions every two months. At that time the rods will be removed and she will have another operation to fuse her spine.

For the upcoming rod surgery, there will be less soft tissue damage as they will use the same channel for the new rods. They will however need to insert new hardware to attach to her lower spine and her first rib. She is expected to be in the hospital for three to four days with a total of five days in Salt Lake City. We are hoping that she will learn to take oral pain meds and so simplify her recover.

Right now the plan is for Katelyn, Kadence and Mimi to arrive in SLC on Wednesday, March 30 and fly back to Phoenix on Monday 4. Katelyn will stay with Kadence in her hospital room while Mimi will get lodging in town and provide relief where needed. Where all previous treatments have been at the Shriner’s facility in Salt Lake City, the surgeries will now happen at Intermountain Primary Children’s Hospital which is part of the University Of Utah Medical establishment. Her surgery will still go through the Shriner’s organization but all other expenses will go through Primary Children’s Hospital and be billed to the Burner’s medical insurance.

After the upcoming rod surgery, we will then resume the extension trips every eight weeks until she reaches skeletal maturity in 18 -24 months. At that time she will have the fusion surgery in which they will remove the expandable and insert permanent rods on either side of the deformed vertebrae. Overtime said vertebrae will fuse offering her the spinal stability she is getting from the rods.

Kadence will remain in the care of Shriners and Dr. Heflin until she is 18 which ensure that if she needs further treatment, they will take care of it.

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It is hard to believe that it has been one year and five days since Kadence had her halo surgery! After seven weeks in the halo she had her rods put in on August 17, 2020. It has been one amazing year!

Since rods were put in we have been back to SLC six times for rod extensions. Each time her rods are extended by 2-3mm so she has gained about ¾” in height through extensions with an overall gain (including halo) of over 2” and nearly 20 pounds in weight.’

While she is doing exceptionally well in her daily activities, we continue to monitor the kyphosis (hump at the top of her spine) and scar tissue around the point of expansion. If either of these go “south” she will likely have rod replacement surgery. Dr. Heflin is hoping for a one more full year with these rods with the likelihood that they will be replaced for the last two years of expansion. When she is 12ish she will have the spinal fusion surgery. In the meantime we will continue to make “expansion” trips every 8-10 weeks.

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MERRY CHRISTMAS FROM SALT LAKE CITY AIRPORT!

We have just completed our second rod extension visit at SLC Shriner’s and we all continue to marvel and the changes in this resilient little girl. Since treatment beginning in June, she has gained 18 pounds nearly 3 inches in height. The visits are so much fun as Kadence is still the buzz of the hospital and we got to see some of our favorites in personnel. Due to COVID restrictions we are not allowed free roam of the hospital but they do gather to see us in the clinic area.

Because we are here at Christmas time, we spent a lot of time downtown looking at the light displays. It was limited because of COVID but the cold and the Christmas lights helped to get us more in the spirit. SLC has always been a great place for the holidays.

We also found out that Kadence’s drawing from a year ago was voted #1 and she got the prize of McDonald’s gift cards. We did not remember the contest or the picture but the award was further validation that she has a future in art (Grandma Dottie’s genes).

Back at home she has adjusted remarkably well to the rod restrictions (which makes Mimi happy as she is no longer jumping on the furniture), is doing very well in school and becoming more and more conscious of her new scoliosis free silhouette.

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Many have asked how Kadence is doing after her surgery so we want to offer a post-op update.

The flight home was relatively easy with the help of TSA manager (who had to be called to get her through security) and the SW gate/flight staff. They let her board first and helped to get her situated with all her pillows so she was pretty comfortable. The flight is only 1 ½ hours and the ride home another 30 minutes so the medication was still in effect during the whole flight.

She makes a little progress everyday in being able to walk around, sit up and generally maintain a low level of daily activity. The main challenge at this time is the muscle knots in the shoulder where they had to manipulate her spine/ribs the most to get the rods anchored. She is completely off medication except for something at night and a bit of CBD ointment to loosen the muscles in her neck. Walter (Dr. Heflin’s case manager) said that this often happens and to just treat symptoms. They will assess it when we go up for her follow-up and first extension on 9/20.

Both she and Jayden have started online school which is not the best but probably does allow her to have a presence there which she would likely not be able to have if they were meeting face to face. Her teacher and the school have been most accommodating and she is pretty smart so we do not expect her to have difficulty catching up once she is able.

As you can see, recovering from major surgery is pretty uneventful. Once the shoulder/neck issue is resolved we expect her to bounce back quickly. Even that takes time, however, so we continue to be patient and thankful for every little bit of progress.

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