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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Our week began with a happy reunion between Kadence and her daddy… no tears but lots of hugs. Seven weeks is a long time to to be apart from her family. She was able to show her daddy around the hospital and introduce him to all her new friends including the other halo girls (who were featured on Shriner’s FB page by the way).

On Monday she was taken into surgery at about 9:30 and back in SCU after 4+ hours. The way the surgery was described to us is that they connect the rods with screws to her pelvis, thread the rods through the soft tissue to the top and then hook them to her ribs. In the x-rays you can see that she has three clips on one side and two on the other. Dr. Heflin was pleased with the outcome and said that although her spine was more stiff than he expected, he was able to straighten the curve so that now at about 55 degrees.

The first few days after surgery were pretty rough. She was in a lot of pain and had difficulties with taking medication. After a few days we have learned which meds work best in what form (pill or liquid) and she is showing a marked improvement both in her spirits and mobility. The physical therapist got her walking and sitting up a few times a day in preparation for the trip home. She is eating a bit more and her pain is managed with oral meds so it is looking as if she will be able to make the plane trip home on Saturday.

So what lies ahead? She will be back for her first follow-up in six weeks at which time they will do her first extension. Then she will come up every two months for extensions of the magic rods. We were able to watch this process on another patient. They use magnets to get an idea of rod placement and then ultra sound to measure the extension – usually 2-3 mm. The device pictured about is the one they to magnetically extend her rods.

In a couple of years they will likely need to put in larger rods as all indications are that she will be doing quite a bit of growing. When she reaches skeletal maturity, she will come up for spinal fusion surgery. This is quite bit more involved as they will be taking out the expandable rods and replacing them with two shorter rods which will be screwed to each side of her spine along the curvature. Over the next few years the bone will fuse together and hopefully the process will be over.

While this week has been particularly grueling and we are not looking forward to the Phoenix heat, we are all anxious to get home. As always we cannot conclude our post without expressing our gratitude to the Shriner’s staff who have been simply amazing, and to our family and friends for your prayers and support.

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We have made it through three weeks of halo treatment without much trouble. Kadence is up to full weight on the traction of 18 pounds and will remain at this weight for four more weeks. She will then have the rods put in place and hopefully be home by August 17th. Latest measurements indicate that she has gained 2 ½ pounds in grown nearly 2 inches. Her shoulders are now even and the kyphosis is greatly reduced. We can see a big difference in her profile.

The weather here is beautiful so we are able to get outside often. While only one parent/guardian can be inside the hospital with her, Katelyn and Mimi have been able to meet on the patio, have a meal and make the weekend exchange. Needless to say Kadence was so happy to see her mom and can hardly wait to get home to see her new bed (oh yes and her daddy, brother and rest of the family.)

She has made one new halo buddy (hence the Shriner’s Angels patches we want to put on tee shirts) with another to arrive today. She has also a host of hospital staff admirers. While COVID has put an end to most of the regular activities for halo patients, we have been able to keep ourselves pretty entertained with the help of the staff… can’t say enough good about all they do.

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We have spent the week establishing a daily routine, adding weight every day. As of Saturday, Kadence is at full weight of 18 pounds. Dr. Heflin’s said that if she can tolerate it, they may add more, but as the one who has to transfer the weight from the walker to the bed I (Mimi) marvel that she is able to get around the way she does with that much weight attached to her head!

As Kadence is the only halo patient at the time and all other patients have been discharged we basically have the run of the hospital on the weekends. We spend our time having races around the playroom (which is a huge rotunda with great acoustics), singing tunes from the Lion King at the top of our lungs and dancing along. It is great fun for us … not so sure about the two nurses that are on duty or the security guard. So far, I think that Kadence has been able to keep them all amused. She is definitely a favorite. One of her nurses even came by on her day off to wish Kadence Happy 4th – so sweet. Saturday we ordered pizza and had a pizza party with the staff who had to work on the holiday. Monday a new halo patient is to arrive so, while Kadence is very happy, we are going to have to start behaving ourselves.

Monday: We just met the new halo patient Leiannah who is several years older than Kadence but both hit it off well. The staff were happy to have Kadence as the “halo ambassador” and I think that Kadence was able to offer some reassurance to the family.

We have been amazed at how quickly we are able to see some changes in Kadence’s back and posture. We took pictures the night before coming in and the same pose after just two weeks. Her appetite has improved immensely and she has gained about 2.5 pounds since she got here. It is exciting to watch as the halo does its magic…five weeks of this and then the rods

Biggest news for upcoming week is the Mom is coming on Friday and will be here for the weekend. The countdown begins….

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