Brothers

There was a time when the boys were babies that I worried they wouldn't share that "special twin bond" because of their differences. Cohen was growing and exploring but seemed to not pay much attention to Bryce. Bryce on the other hand has ALWAYS studied Cohen watching his every move. He has always truly idolized him. As the boys got older, Cohen started having more of a love/hate (hate might be a little strong but you get the idea) relationship with Bryce. One minute he would be giving him hugs and the other minute slapping him. You could see Cohen struggling with feeling like Bryce got more attention than what he was getting. Even though Cohen got plenty of attention; in his 3 year old mind it must have appeared he didn't. About a month ago Cohen started asking questions...

Why can't Bryce talk? Why won't Bryce get up and dance with me?

The questions caught me off guard and I have to admit that I really didn't know what to say at first. Each time (after a long awkward pause while I am figuring out how to approach the conversation) I tried to explain to him why Bryce couldn't do some of these things. Truth is - I fumbled more than I should and Cohen could probably tell. He quickly changed the subject each time. He even laughed off that Bryce couldn't talk by saying "He is kind of like Tax - he doesn't have a voice."
-Side note - Tax is our Dog.

The last few weeks Cohen has really been changing with Bryce. For a while now Cohen has called him "Brycie" which I love. He wants Brycie to do this or Brycie to do that... always wanting him to do whatever he is doing. It is even going as far as Cohen wanting to wear the same clothes or similar clothes as Bryce. Cohen often tells us what Brycie said or what Brycie did.... He even magically knows when "Brycie wants some cookies." Imagine that :o)

Last night Matt mowed the yard and let Bryce ride with him. Cohen threw a fit until Bryce was off the mower and next to him. We had thought Cohen was throwing the fit because he didn't go first but it wasn't that at all. He wanted Brycie with him. Whenever Bryce goes to appointments or to his "other school" Cohen always says he is going to miss Brycie. I can see more than ever that "twin bond" or "brotherly bond" really forming into something strong. They seem to be able to communicate on another level. I couldn't be happier seeing this.

Cohen is starting to realize that he needs Bryce just as much as Bryce needs him.

Aren't they just the best looking two you have ever seen?

One Battle Over

Once we had decided that Bryce's best opportunity would be to have the surgery in St. Louis with Dr. Park, we knew it would be a battle with insurance. Let's just say that it was countless hours of battling with our insurance company . I wrote numerous letters of appeal, received numerous denials and made daily phone calls to the insurance company. I have had battles with insurance before but nothing (and I do mean NOTHING) like this. It was hard, it was exhausting and it was a HUGE weight on my shoulders. I even went as far as contacting my employer to reach out to my insurance company (which they actually did but in the end it didn't help). I contacted the Department of Insurance for help as well. Matt and I even applied for a medical loan as a last resort - we were desperate to get this done.

How was it possible that Bryce have two insurance coverages but NO ONE would cover? Finally I talked to the right person and learned that I could also appeal through the secondary insurance, Kentucky Medicaid. I had always been told his primary had to cover a portion of cost before the secondary would cover anything. I never had considered appealing through the Kentucky Medicaid based on the primary's denials. I was wrong!

To shorten up what took months to achieve - Bryce's secondary coverage has agreed to cover the surgery. They have already reviewed and APPROVED the Prior Authorization. The lady telling me this on the phone could never understand the news she was delivering. I, of course, asked for it in writing but....
IT IS COVERED... IN ST. LOUIS... with the AMAZING DR. PARK!!!!!!!

Bryce is scheduled for surgery on Tuesday, July 9th.

We will travel to St. Louis on Sunday, July 7th. Bryce will have his appointment on Monday, July 8th with Dr. Park and his team. After surgery he will spend 5 days inpatient before being released to go home. My mom and mother-in-law will go with us. They will help entertain Cohen - of course Cohen has to go. He and Bryce are so close and Bryce does best with Cohen around.

Miracles Can Happen!
Sometimes they don't happen on their own but they do happen with a little help.

This is by far the best Mother's Day Gift I could have gotten!

Waking up and then begins the nightmare

December 15, 2012

I woke up at 6AM for what would seem to be no reason. I didn't hear anything - I just had a very nervous feeling come over me. So I stayed in bed, wide awake. About 20 minutes later I heard a strange noise coming over the baby monitor that we still used in the boys' room. I sat up in bed so that I could hear a little more clear. After another few minutes I heard another noise that sounded like one of the boys may be vomiting. I got up and went in their room - still completely dark I went to check Bryce first. I felt around his face and did feel a wet area. I went to clean it up and wondering if he might be laying in some of the vomit, I went to turn him (from him belly) so that I could feel underneath of him. When I moved him, it was like moving a rock. His position didn't change, he was like turning over a rock. I quickly flipped on the light and could clearly see that he was seizing. His eyes were up and to the right, his chin was making a rhythmic movement and he had a slight twitch in his hand. He wasn't responding to me in any way. I quickly moved him to the living room (by this time Cohen had woke up and was following behind). <> Knowing that we needed to go to the hospital, I quickly dialed my mother-in-law thinking she lives closest. I would find out later that I only let the phone ring one time and then hung up. I then quickly dialed my parents - my dad answered... "Just get here, both of you and fast."

I called 911. During the call the dispatcher had someone call my mother-in-law so that we could have people in route to my home. I needed someone else to get there so that I could go with Bryce. Poor Cohen was oblivious to what was happening and I was trying to keep my cool in front of him. I can't say that I did a very good job of this. The ambulance arrived and the paramedics let me walk Bryce out to the ambulance. Right when they were about to leave, my parents and mother-in-law came flying into my driveway. I must have told them a little bit of what was happening, then shouted demands.... Someone would need to stay with Cohen but someone would need to come be with me and bring me some things from home. These Grandparents came in the early morning hours not knowing what they were pulling in to find. Amazing Grandparents they are (actually amazing just doesn't cut it - but that is for another post.)

We arrived at the hospital and there must have been 20 people or more working on Bryce. All I could do was stand back and watch. Bryce's condition hadn't change at all and I knew by that time it had been well over an hour. I kept thinking - this has to be his shunts - this has to be a shunt malfunction. The Chaplain was there to stand by me - which bothered me even more... I kept thinking why were they sending the chaplain in? After what felt like an eternity but I know that it wasn't - my parents were there. We stood back and watched. On occasion they had me go and be next to him. I honestly don't know how I stood on both feet. Finally the doc in charge (she at least seemed to be the one in charge) came to me and said we are going to need to intubate him. I was crushed - why was this happening?!?! She could see it in my face - please no. She told me that I had 5 minutes - I needed to do anything possible to get him to come around. They needed him to start responding. His CO2 level was 94%.

I quickly told my dad that it was time to call Matt- Poor Matt all the way in Idaho was about to get the worse phone call ever and was hours away from us. Why was this happening? I was by Bryce and I know that I was pleading with him. I had that desperate conversation that no one should ever have to have pleading him to stay with me. It didn't take much longer for him to bring up his little arm and start hitting at the "bag" the nurse was using to keep him breathing. He was fighting - of course he was fighting - he always has!

After various medications and tests, things slowed down. The shunts were stable so that was good news but left us with many more questions. Matt was trying to make it home but (on Saturdays) there are only two flights out of Idaho so he wouldn't make it back until late that evening. Bryce was admitted to the PICU and we stayed over night. No one knowing what really happened, other than he had a seizure that lasted at least three hours (counting from when I found him anyway). He was started on an anti-seizure medication and we went home. I pushed to have a Sleep Study done since he had done this in his sleep - similar to the September 2011 incident that occurred in his sleep. See post Trauma South Carolina if you weren't aware of that one.

We did have a 24 hour EEG with sleep study done in February. The results came in as follows: Bryce slept 3.5 hours (the picture should show why) and stopped breathing 7 different times. On average he would stop breathing for 23 seconds and his oxygen saturation would be around 77% (normal is 99 to 100). There it was - the answer to what happened. So most of the time Bryce is able to take that big breath but obviously there have been two times where his brain did not tell his body to breath.... This isn't sleep apnea but instead centralized apneic events. We have our answer so now what do we do?

Bryce will have another Sleep Study done tomorrow, May 2nd but this time with oxygen titration. They will have him on a low setting of oxygen and slowly turn it up until he stops having these pauses in breathing. Most people know that I could count on one hand the number of nights that I don't get up at least 3 times or more. Even on a good night I still get up at least once or twice. As you can imagine though, knowing that he needs oxygen but waiting for the second study and results to give him that necessary oxygen has made it even harder to get sleep. I am hoping once we get this all straightened out that we all start sleeping a little better, and for Bryce, a little safer.

Wish us luck - We hate overnight stays at Children's, but at least this one is planned.

This child does absolutely EVERYTHING with a smile! We can all learn something from him.

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.

Trick or Treat

Happy Halloween (a day late) from the UK Wildcats!

This was the first year that we took the boys out to trick or treat. We just went to a small strip of houses. At first the boys didn't really know what to think. The more houses we went to Cohen really got the hang of it. He would say "trick or treat" and "thank you" each time. He was loving it! Bryce started warming up to it to and finally started giving out his smile to some of the people. It was so cute to see how excited they were to have their bags filled.

Of course once we got back they had to have some candy. What stole the show for me was the Pop Rocks. I wasn't sure how the boys would react but Daddy just had to see. Cohen thought it was pretty good, but didn't seem too impressed. Bryce on the other hand was LOVING them. I was shocked! He isn't a kid that has sensory issues, but I still didn't think he would be a Pop Rock fan. I was so wrong. We really did have a wonderful time!