The Prediction

SDR continued...

Once it has been determined that Dr. Park has accepted your child as a candidate for SDR, he also makes a "prediction" of what you can expect post-surgery. Of course, he is only applying his years of experience and outcome of children that came before you.

I have heard from numerous parents:
"Dr. Park's prediction was spot on."
One mother wrote:
"It was so eerie, a year after the surgery, Dr. Park couldn't have been more right about how my child would be functioning."

So once I was told that Dr. Park wanted to do Bryce's surgery, I wanted to know what he "predicted" as Bryce's outcome knowing it was just a prediction...

So nervously I asked.... "So, what did Dr. Park predict for Bryce's future..."

The Park Prediction:
"Bryce's posture will improve along with his sitting and standing. He will be able to transition positions. Bryce will be able to walk independently with a kaye walker without needing any additional accessories."

I was filled with even more excitement! If we could get Bryce that far....it is breathtaking just thinking about it. For those that do not know, a kaye walker is basically (a backwards) walking frame.
The additional accessories (that the doctor predicts WOULD NOT) be needed are:

• chest prompt
• arms prompt
• hip positioner
• pelvic support
• thigh prompts
• hand loops
• guide bar

Let me repeat- Dr. Park predicts that Bryce would ONLY NEED the support of the frame itself. That means holding on and just walking!!!!! Also very exciting was the "sitting and standing" and the "he will be able to transition positions."

Another positive that the surgery has on many patients is that speech begins or improves for some of these kids. Basically, when the spasticity is eliminated the child is more relaxed which opens their diaphragm. This helps the child breathe easier and can help progress speech. Bryce tries so hard to talk, he constantly verbalizes with us. We are hoping that he will soon find his words.

We know that it will take months, even years to see the full benefit of such a surgery. We also know that a prediction is just that. But it is hope, without it what would any of us do? It is that hope that will push us through these very tough times.

New Phase of Our Journey :: Selective Dorsal Rhizotomy (SDR)

A little over a year ago, we started looking into a way to manage Bryce's spasticity. The spasticity in Bryce's legs have become increasingly unmanageable. We were taking him for Botox injections every three months and each time this was becoming less and less effective. Over time we were also noticing that his legs were becoming deformed. When his legs were straight his knees were slowly beginning to be knee cap to knee cap. Eventually they would even cross one another. Bryce was also having a more difficult time in his Gait Trainer. It also seemed that Bryce's physical therapy was beginning to somewhat plateau. It was time to look into another permanent solution for the management of his spasticity. We spoke to Bryce's CP Doctor at Children's and he said that we had basically two options.

The first option was a baclofen pump, much like a diabetic pump that would be implanted so that this muscle relaxer would be injected directly into his spine. I never wanted to even explore this option. Bryce has two shunts and I wasn't willing to add to the hardware that he has in his body. Another issue with the pump was that Bryce would need to grow quite a bit since there would need to be enough space between his rib cage and pelvic bone in order to place the pump. We needed something that we would be able to do for him sooner. Our fear was the permanent deformities would start to set in.

The second option was a procedure called Selective Dorsal Rhizotomy (SDR). This surgical option would be a permanent solution to the spasticity and would not require additional "hardware." We began doing our research and found great information provided by the St. Louis Children't Hospital. The surgery involves sectioning (cutting) of some of the sensory nerve fibers that come from the muscles and enter the spinal cord. Additional information can be found via the provided link: http://www.stlouischildrens.org/our-services/center-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy-sdr. We also found that Dr. Park has performed this procedure since the early 1980's and has transformed the surgical technique which allows for a faster recovery and better results. He has performed this surgery on over 2,500 (and growing) patients with cerebral palsy. After a lot of discussion, Matt and I decided that this would be Bryce's best option. The results have been nothing short of amazing. Some children that had never been able to sit independently, crawl or walk were starting to do all of these things after having this operation. This isn't the miracle surgery that is performed and the child wakes up able to do all these things. However, this surgery along with months of intense physical therapy can lead to these results.

Our next step was to gather necessary medical information, x-rays and a video of Bryce doing particular tasks and in particular positions. Once we had gathered this information we submitted our package of information to Dr. Park and his team. After waiting just a week, we received a phone call from the lead physical therapist on February 15th. She told us that after reviewing Bryce's information with Dr. Park and his team, they have determined that Bryce's would be an excellent candidate for this surgery. Best of all - Dr. Park WANTED to perform the surgery on Bryce. It was one of the best phone calls I have ever received.

This would begin the Insurance Battle- countless appeals, letter writing and nagging phone calls.

So I took some time off...

There have been so many things going on in our little lives that blogging was one of the last things that I had time for. I really haven't found more time but I do think....

It is time to re-activate!

We do want to keep friends and family updated, but I want to start documenting some big things that are happening in our lives for the boys (and for myself).

We have declared 2013 the year of Bryce. Big changes will be coming his way. I will be posting more about what we have going on, what we are facing, what Bryce is facing. This is a very exciting time in our lives, but equally as scary. Stay tuned friends - if there are any of you left. We will be making some announcements very soon.

On to other news, the boys are quickly approaching 4 years old. At times it is hard to believe that four years have passed ---- it feels more like 10 years. They have started preschool and are developing such great little personalities. The bond between the two of them get stronger every day. I have to say I am so proud of both of them. I promise to (at least attempt to) keep this blog updated.