First Annual Kaden's Wish Fundraiser

Kaden's Wish

Kaden Stark is a 7-year-old Make-A-Wish recipient who decided that he, along with his family, wanted to start a fundraiser that could help pay for other kids to receive wishes. Kaden’s Wish has been created to raise money and awareness for the Make-A-Wish foundation and the United Mitochondrial Disease Foundation. On November 10^th, 2012 we will hold the first annual Kaden’s Wish Fundraiser at Champps Americana inBrookfield, WI. There will be a silent auction and a watch party for the Wisconsin vs Indiana football game. Come join us for some Badger fun and support the Make-A-Wish Foundation. Check out our Kaden's Wish facebook page.

Below is Kaden's Make-A-Wish story that tells a little bit about our amazing experience. 

Kaden's Story

Kaden has a rare form of mitochondrial disease called Leigh syndrome. Leigh syndrome is a fatal progressive neurodegenerative disorder and there is currently no cure. This genetic disorder causes his brain to not get enough energy at times. That lack of energy production does damage to Kaden’s brain, which at this time causes Kaden to have motor issues.

The biggest issue caused by Kaden's mitochondrial disease is Dystonia. Dystonia is an involuntary contracting of the muscles. A doctor once described it to us as being akin to getting a cramp in a muscle. Only Kaden could have a dozen muscles cramping at once and those cramps could last for days or even weeks. This sounds painful but you wouldn't know it from Kaden. It's rare that he isn't showing off that beautiful smile or laughing at his siblings. That's Kaden and everybody knows his smile.

We had heard of Make-A-Wish a couple years ago from several families at New Berlin Therapies, where Kaden goes for physical, occupational and speech therapies. The stories we heard were all incredible and it started us thinking that we really need to get away with the kids. We started the paperwork with Make-A-Wish and before we knew it, there were wish granters at our house and bags of toys for all four of our kids. The process was very easy and everyone associated with Make-A-Wish was phenomenal. They took care of everything, and I mean everything.

Kaden's wish was to go to Disney World. I think he chose this destination as much for his brother and sister as he did for himself. Kaden became a hero to his brother and sister. Anyone who knows Kaden knows that he doesn't mind being the center of attention. On our trip to Disney World, Kaden was treated like a rock star and he was in heaven. The trip was unbelievable. With this Make-A-Wish trip we went to a resort called Give Kids The World, which is exclusively for Make-A-Wish kids. Everything there is fully accessible and they handle any and all needs that a family with a disabled child could have.

We were given 3-day passes to Disney World, 2-day passes to Universal, and a day pass to Sea World. We started our trip with petting dolphins at Sea World. Then we celebrated Kaden's little brother's birthday the next day at Magic Kingdom. Went on a safari ride at the Animal Kingdom. Saw shows and rode rides at Hollywood Studios. Toured the world at Epcot and met our favorite superheros at Universal. The kids had the time of their lives and talk about that trip all the time. It was truly magical.

The biggest thing that my wife and I took from this trip was the fact that we don't need to hold back. I know other families with disabled children know what I'm talking about. Before you go anywhere, you have to think; is there room for the chair, can I get into a building with the chair, will we have to stay out in the heat or cold for any length of time, can we leave early if Kaden isn't feeling well. These are things that most people don't generally have to think about. When we go somewhere we always have to have a plan.

The accessibility of Disney, Universal and Sea World was incredible and the fact that we can go back and feel comfortable that there are facilities and activities that not only include Kaden but that he loved, will ensure that we go back, and often. This trip made us realize that we need to do more, take more time, find more activities that we can do as a family. Time is too short to worry about every little detail.

Our experience, as a family, with Make-A-Wish has been nothing short of amazing. It has inspired us, and especially Kaden, to do everything in our power to raise funds for others with life-threatening diseases to have the same kind of experience.

Catching Up: Part 2

Just after the kids got back into school, we took a week off and went on vacation. We went down to St. Simons Island in Georgia. We drove down and remarkably, the kids did really well. It was a great trip. The kids got to play in the ocean for the first time. Even Kaden was chillin' in the sand and went swimming with dad. Jacob thought it was the coolest thing ever.

Our trip back home wasn't quite as fun but coming home from vacation is never as much fun as going. The worst part of our return trip was that the kids were not getting enough sleep, especially Kaden. The night we got back Kaden had another seizure. Unfortunately, any stress on the body can trigger more seizures. A few days later we all got really bad colds. In fact, mine is going on day 9. No fun. This too triggered more seizures for Kaden. He had three more over two nights. These happened to be the worst two nights of him being ill. No coincidence.

So we have talked to Kaden's neurologist and have decided to increase his ant-seizure medication. The doctor told us that the fact that fatigue and illness is so easily tipping him over the seizure threshold means his medication needs to be increased. So since out increase last week... so far no seizures. We keep our fingers crossed because if this drug fails to control his seizures it will likely mean a hospital stay to try new drugs. Yuck!

Last weekend we went to the first annual Energy For Life Walk which benefits the United Mitochondrial Disease Foundation. Our friends and family showed incredible support as we raised over $3500 and there were 44 walkers representing the Kaden's Kure team (the largest team at the walk). Kaden was so excited and we also learned some incredible news at the walk.

We finished the walk next to Kaden's genetic counselor from Children's Hospital. She says, "I was just about to call you guys. There is a new clinical trial for a drug that may benefit Kaden." Now my ears are perking up! She tells a little about the most recent trial and results that were conducted in Italy and frankly it sounded too good to be true. So this past week she sent me an email for a WebEx teleconference with the doctors running the next clinical trial. I listened for an hour and a half on Friday.

The doctors discussed the results of the first trial in Italy and it sounds amazing. There were ten kids in the trial. All ten not only showed a stop of the progression of the disease but ALL TEN showed a reversal of the diseases affects. Crazy awesome! The doctors also discussed the inclusion criteria for the trial (all the things you need to be considered a candidate) as well as the exclusion criteria (all the things that would keep you from being considered). Kaden meets every one of the inclusion criteria and none of the exclusion criteria. As I see it, he is a PERFECT candidate for the trial.

The drug is called EPI-743 from Edison Pharmaceuticals. This trial is being conducted in three locations Stanford University, Baylor University and Children's Hospital of Akron. All much easier to get to than Rome, Italy. However, for a chance to stop the progression of Kaden's disease or even reverse the affects, we would go anywhere in the world.

So now we play the waiting game to see if Kaden gets in to the trial. I am planning daily phone calls to whoever we need to bother about the trial. Definitely poised to be a pain in the ass until we get him in. Thankfully the doctor that diagnosed Kaden at Cleveland Clinic and discovered his genetic mutation causing his disorder, is the doctor in charge of the Akron trial site. Yeah. Planning a call to him tomorrow.

If anyone is interested in learning more about EPI-743 or the trial here is the link. We will be updating regularly as we find out more. I will be posting again this week about another event coming up that we are really excited about. Til then, thanks for all the prayers and well wishes!

Catching Up: Part 1

Okay, so it's been a while. Sorry about that. We've just been having too much fun to stop and reflect lately. We had a great summer even though there was a stretch that left us stuck inside because of insufferable heat. One of the big risks for a child with a mitochondrial disease is overheating. That meant we had to stick to air conditioning a lot this summer. That's okay, better safe than sorry.

Well our spring was fairly uneventful. Kaden finished up 1st grade and did a great job. The school has really done a good job figuring out ways to assess Kaden and he likes showing off how smart he is. Math is definitely his strongest subject but he loves pretty much everything about school.

When we did get out this summer, we were at Kylie's softball games, visited cousins, played on a trampoline, and Kaden did a lot of walking in his gait trainer. On days when it was cool enough, he also spent a lot of time outside with his papa under their shade tree.

Late this summer we did have a little scare. Kaden had a seizure. He went 11 months without a seizure. Of course, Kaden has been taking anti-seizure medication but when he gets stressed by illness or fatigue he is more prone to having seizures. Still, 11 months is great. With a slight increase we didn't see anymore seizures for the summer.

Toward the end of the summer we were able to go to a Make-A-Wish event called Yacht Blast for Kids. At this event our whole family got to go to the Milwaukee Yacht Club and go out on a 45 foot yacht. That was really cool. The best part of the event, however, was the dinner and the after party. Our family was asked to stay and say a few words about Kaden and his wish from last year. The event included dinner as well as a silent and live auction. At the end of the night Kaden drew the name for the winner of a brand new Harley Davidson motorcycle. Needless to say he was really excited. Dozens of people came up to meet Kaden and thank us for sharing his story. Make-A-Wish is an incredible organization and that night has really inspired us to do more for this organization (more about that later).

Stay tuned for the rest or our catching up.

Happy Holidays

Well, the past two months have been very busy. We ended October with an amazing trip to Disney World through the Make-A-Wish Foundation. The trip was unbelievable! We all had a great time and the accessibility of the resort and parks was phenomenal. Kaden was able to ride on many of the rides in both Disney and Universal. I would strongly recommend both parks to any parents who have a disabled child. When we think about going somewhere, whether it be the zoo, a park, a mall, etc., we always try to think ahead for the challenges of having a child in a wheelchair. We have to consider how long we have to wait in lines and where we will eat. If we are traveling, we have to consider accessibility to the room, accessibility in the room, and sleeping arrangements. All of this was taken care of for us with this trip. The Make-A-Wish Foundation really does a great job and allows families to feel safe and comfortable.

While in the parks, we had a guest services badge that worked as a fast pass to almost everything in the parks. I initially thought that this was a perk of being associated with Make-A-Wish. What I came to find out is that these badges are available to anyone who has a disability. At both Disney and Universal, you can go to guest services and if you are able to prove that someone in your party has a disability then you can get the badge. Now that we know this, we will definitely be making another trip in the next couple of years.

After we got back from Florida, Kaden had an MRI and a follow up with the neurologist. While we were in the office Kaden had an "episode". The episode consists of Kaden sticking out his lower jaw, turning his head to the right and looking up toward the ceiling. We have been seeing this type of episode for several months and had thought it was dystonic. The neurologist was concerned that this was a seizure because it happens in episodes so we did an EEG right there in the office. The EEG showed some slowing which is normal after a seizure. Now we are freaking out again. To be certain, we admitted Kaden for an overnight observation. He was hooked up to the EEG all night and was not very happy about it. What we found was that the slowing that they were seeing was his baseline and not necessarily associated to a seizure. This was a relief. We were sent home and the neurologist decided to increase his seizure medication as a precaution and also to see if it affected the episodes.

We spent the next week and a half increasing the medication in steps. Kaden did not react well. The increase made him very lethargic. To the point that by 5:00pm each day he could barely hold his head up. The good news, I guess, is that the episodes did not stop. He was still having them a couple times a week. The reason this is good is that it is likely dystonia and not seizures. So we called the neurologist and started reducing the medication. We now have Kaden back to himself and not the slug that the medication had made him.

We also got some bad news from the neurologist. Kaden's MRI does show some deterioration of the brain. The image shows two things. First there are more lesions on the outer portion of the brain, which is likely the reason for the seizures. The second is a general shrinkage of the brain. The way you can see this in the image is that there looks to be just a little more space throughout the brain. What this tells us is that Kaden's disease is progressing. How fast it will progress, there is no way to know. Coming to terms with this is difficult. All we can do is continue to look for ways to slow the progression and hope that some day there is cure for his disease. With the continuing advances in medicine you never know. We choose to stay positive and enjoy every minute we have with Kaden. He's as tough as nails and somehow, some way, we continue to believe he will beat this disease.

Now that I have thoroughly bummed everyone out, it's time to remember that this is the season for hope. We want to wish everyone a happy holiday and thank all of our friends and family for their continuing support.

Merry Christmas!

Steve, Miki, Kylie, Kaden, Jacob & Maddie

Ready for a trip!

The last two weeks have gone well for Kaden. He is now on Keppra which is a fairly common anti-seizure medication. Knock on wood... no seizures since the day we took him into the hospital two weeks ago. He is still adjusting to the medication because it makes him a bit drowsy. Otherwise, things have gotten back to normal and we keep moving forward.

So, I promised some good news in the last post but we have been hesitant to talk too much about it because of the craziness of the last two weeks. Now that it seems Kaden is stable with the seizure medication I think it's okay to let everyone know.  Kaden has been granted a wish by the Make-A-Wish Foundation. He chose to go to Disney World and we are leaving next Friday the 21st. The kids are so excited! I have to say that Miki and I are very excited as well. I think that Kaden is more excited about being the reason we are going than actually going to Disney. He is Jacob and Kylie's hero.

It really is an amazing opportunity. We found out that Kettle Moraine High School is Kaden's sponsor for Make-AWish and a couple weeks ago our entire family was invited to one of their football games. They had a fundraiser prior to the game with carnival games and rides and the entire thing benefited Make-A-Wish. Basically it was a fundraiser for our trip to Florida. Unbelievable!

We'll be sure to take lots of pictures and post them after we get back. Thanks again to everyone for their prayers and well wishes for Kaden. We really do appreciate it. 

The Scariest Eight Minutes

It was a typical Monday morning in the Stark household. Miki, Maddie and Jacob were up at about 5:30am. I decided to stay in bed instead of going for my morning walk, due to the rain (lazy ass!). I got up about 6:30am and Miki was preparing the kids' breakfasts while I prodded Kylie to keep moving (Kylie's not a morning person) and get ready for school. Miki left about 7:00am for work and Kaden was still sleeping.

About 7:10 I went into my bedroom to check Kaden on the TV (we have a night vision camera in Kaden's room so we can see him while he sleeps). When I switched over to the camera I thought, "Okay he's moving, time to get him up." Then I noticed how he was moving... rhythmic jerks. I sprint across the house, nearly ripping the door off the hinges to his room. When I get to his bed my fear is affirmed. Kaden is having a seizure.

Now, Kaden had something called infantile spasms when he was about 8 months old. These are a form of seizure and was related to his mitochondrial disease. We were told then that there was a chance he may develop seizures later in life but there was no way to know when or if it would even happen. The fact is, once you've had any type of seizure, you are more susceptible to them later in life. Kaden made it nearly 6 years and Monday it happened.

A lot of thoughts ran through my brain as I'm watching my 6-year-old in the middle of a seizure. First, is he safe. He sleeps on his side which is the best position when seizing so you don't swallow your tongue. Second, how long could he have been seizing for? That's important because anything over 5 minutes and I need to call 911. Third, stay calm because the other 3 kids are in the next room and I didn't need them freaking out. Fourth, call Miki and get her back home. Now there were other, darker thoughts that I don't want to rehash but after I entered the room the seizure only lasted another minute and a half (felt like an eternity).

So now that the seizure is over I pick him up and take him to my bedroom. When we get there, he is unresponsive. If I thought the minute and half seizure was bad, now the clock starts ticking on the scariest eight minutes of my life. Kaden's eyes are open staring off into nothing. I talk to him, snap my fingers, call his name... nothing. No movement, no response. I know he's breathing I can see his chest moving up and down, but now I start to wonder how long did the seizure last. 3 minutes. 5 minutes. 10 minutes. Can't be more than 10 minutes because Miki checked him before she left. By this time I'm starting to really panic, Miki is on her way so I lay down next to him and start hugging him, stroking his hair and face and talking to him. Five minutes and no response. Now I'm thinking, "did I just lose my son." Then I scold myself, "NO, he's breathing we'll get him to the hospital and they can give him medication that can help with damage done from a neurological event like a seizure." I keep talking to him and still no response and no movement. His eyes aren't even blinking. This is unbearable.

Then it happens... he answers. I have kept asking him to talk to me, asking if he's okay, telling him how much I love him. And he finally answers, "yeah", he blinks his eyes and starts to move a little. WOW, relief! I found out later that this behavior is actually normal after a seizure. Most people are completely spent after a seizure and sometimes it takes a while (as long as an hour) before the seizure victim is back to normal. That would have been helpful info. during those excruciating eight minutes.

Well, we ended up calling Kaden's doctor and he recommended that we take Kaden to the emergency room at Childrens' Hospital. So we did. That was pretty much a waste of time as they checked him out and said, "He looks fine. Can you describe the seizure again." I respond, "Okay, but I have already told the first four doctors that came to look at him." The good thing was that he checked out okay. The ER doctor spoke to neurology and said we could go home and just follow up with Kaden's pediatrician and neurologist. They did give us a prescription for an emergency seizure medication in case Kaden were to have a seizure lasting more than five minutes. We make it home by about 11:30am and speak to the neurologist on the way home. She tells us if Kaden has another seizure or we see any signs that Kaden is having trouble that we should bring him back and they would admit him into the hospital.

By the time we get home Kaden was doing well and he ate a big lunch. Miki decided to take advantage of all of us being home and took Kaden to pick up his new glasses at the optometrist. While there, Kaden has another small seizure. We call the neurologist and by 3:00pm we are back in the hospital. Kaden had a third seizure right when we got into his room which everyone got to witness. The weird thing is that during the second two seizures Kaden was coherent and answering questions. In fact, in typical Kaden fashion after the third seizure that lasted about three and half minutes Kaden says, "all done". Like he's apologizing for it. He's such a tough kid.

They decided to forgo the EEG on Monday and gave him a large dose of Phenobarbital to get the seizures under control. This however knocked him out at 5:00pm and he didn't wake up until 7:00am the next morning. Because it's a sedative, Kaden was rather ill on Tuesday and couldn't keep any food down. Finally Tuesday night he ate a good dinner, kept it down and got another good night's sleep. The doctor's switched him over to a drug called Keppra which is much more mild than Phenobarbital. Today he was still pretty out of it but much better than yesterday. We were able to come home about 11:00am this morning and Kaden seems better just being at home.

So now we have a lot of follow up over the next couple of weeks. The doctors feel the medication should control the seizures and life will move on. I think Kaden just likes to prove how tough he is from time to time. Well... that's all for now. I have been saving up all of the fun stuff we've been doing this summer along with an upcoming surprise set for October, so I will post again in a couple of days with some fun stuff. Thank you to everyone for your thoughts and prayers. We are so lucky to have friends and family who give us so much support and love.

Well, it's been a while. Nothing much has changed. We've kept plugging along with therapy and dosage increases for Kaden's Baclofen pump. HIs tightness is a little better. While the loosening of his muscles has not necessarily helped with function, I do think it has made him a bit more comfortable. Hopefully we will get to the right dosage of medicine and things will start to progress from there.

About three weeks ago Kaden did an intensive 4 days of therapy with a different type of therapist. The therapy is called the Anat Baniel Method or ABM. It is related to another form of therapy called Feldenkrais. These are not considered mainstream methods of therapy but practitioners have had considerable success with children who have brain related diseases and injuries. Kaden did 2 sessions per day for 4 days and he seemed to like it. We didn't see overwhelming results but we really liked the practitioner, Pati.

Today we drove down to Chicago and met with another practitioner who is sought after all over the country. Her name is Marcy and Kaden did very well. After just two 45 minute sessions, she had him loosen up a bit and we can really see how this might be beneficial for Kaden. We are going to continue with Pati here in Milwaukee, at least for 3 or 4 months, and see how Kaden responds. The difficult part will be discontinuing his PT and OT at the current facility we use. They have been wonderful to Kaden and to our family but we really feel it's time to change things up a bit.

Kaden also had Make a Wish come to see him and the whole family two weeks ago. He has been granted a wish! He chose Disney World as his first choice and the San Diego Zoo as his second. I think Kylie and Jacob are pulling for Disney World. Kaden will be very popular with his siblings for quite some time I think. Either way, it will be a great adventure for our family.

We all had a great 4th of July! Very busy. Fireworks, parade, pool party. I swear the kids could have slept for a couple days straight. I know Miki and I could have.

Camp is right around the corner for Kaden and Kylie. This is the 1st year Kaden will have just a helper and not mom, dad, or a grandparent with him. I think he will handle it well. Especially if he gets a cute girl as a helper. He is such a flirt!

So, that's all for now. Should be an interesting couple of months. We won't wait so long to post next time.

A Progressive Disease

Just when we start to feel good about where we are headed with Kaden's treatment, we have to go see genetics. Today we had one of those appointments that we could do without. We met with Kaden's genetics doctor today and the entire appointment was doom and gloom. It's a vicious cycle that we can never seem to break. Upbeat and hopeful at one appointment only to be brought back down at the next.

I've learned over the last few years that you cannot take every doctor's opinion as gospel. Today, the genetics doctor gave us several updates regarding Kaden's care. First. The medicine that they put him on last summer that is supposed to stop or even reverse the affects of a mitochondrial crisis is probably ineffective. So we are now taking off that medication. That's actually not bad, one less thing Kaden has to suffer through twice a day.

Second. There have been advances in how they understand the mutation that affects Kaden. It's all very scientific but the gist is that Miki and the other three kids will all likely have this mutation. However, in Kaden there is a much higher concentration of cells that are affected. That is the reason he has had damage to his brain and Miki and the other three have no effects. This does mean it will be important to get the other kids tested just to know where they stand. This disease can appear at any stage of life if the level of cells affected is high. Boy, I can't wait for the anxiety of awaiting those test results.

Third, and this is not news to us. Kaden's disease is progressive. Meaning it is likely to advance and cause further damage to his brain and possibly other systems in his body. Yeah, thanks for the reminder! This is the one that obviously sets us spinning, especially Miki. The one thing that we hold onto is the possibility that Kaden will not have another episode that does further damage. With only six known cases in the world there is no way to know if and when he will have further complications. My philosophy is "Why dwell on the negative."

That's what fires me up about the genetics doctors. Every time we see genetics there is a new drug, or a new method, or some knew insight that in a year from now they back off from or completely reverse their opinion on. FRUSTRATING! What I learned today is that, at this time, there is just no way to know what lies ahead for Kaden. All we can do is keep plugging away, work hard to keep him improving, and enjoy the time we have together.

Nothing in life is certain. No one knows what tomorrow brings. Right now there is no cure for Kaden's disease, but that doesn't mean there won't be one in the future. Genetics is a young science and I think we have to remember that on days like today. I think I've come to terms with the fact that Kaden's disease may progress, but it serves no purpose for me to sulk about it and it certainly doesn't help Kaden. Miki has a much harder time coming to grips with Kaden's disease being progressive. Days like today are so difficult. It's like being slapped in the face.

Well, I've decided I'm not gonna take it. I refuse, we refuse, to give up the hope that Kaden can overcome this disease. We've heard the same doom and gloom speech so many times in the last 5 years. When Kaden first went to the hospital with infantile spasms (seizures) at 7 months old, they told us there was only a 5% chance that he would come out of it. Three days later he beat it and not a seizure since. They told us he would have cognitive issues from the damage to his brain. He's in Kindergarten and doing great.

I say bring it on. Kaden has battled his whole life. He's faced and defeated challenges that I would have never believed possible. You know, I hear a lot of people talk about faith. Faith in God. Faith in religion. I've never been an overly religious person and in the past I've yearned to find my faith.  Well, I have found my faith and it lies in my son and in our family. The faith that I have found keeps me believing he will beat this disease. He's "The Battler" and he will overcome!

Much Needed Appointment

Yesterday we took Kaden to see his neurologist. This was our first appointment with his new neurologist, Dr. Joseph. Kaden has seen her once before as she is the movement disorder specialist at Children's. We really liked her the one time we got to meet with her and today confirmed that feeling.

At this point we see the neurologist about once a year. Each time we go to the appointment we always see the physicians assistant first. Luckily Kaden's previous neurologist had the same PA as his current neurologist. Her name is Erika and Kaden seems to like her. Of course, he has a way of charming all the medical staff he sees. We gave the PA an update on how things have been going and then she checked him out. She was very excited at how he looked and the progress he's making. Just checking his tension in his legs and hearing him talk more really wowed her.

Dr. Joseph came in and Kaden seemed to really like her as well. She was much better than his previous neurologist at explaining the options and limits of his baclofen pump and what we should be looking for as we progress with his treatment. Kaden has gotten a bit tighter over the last month or so and this has been frustrating for all of us. After seeing immediate improvement with the baclofen pump, I think we thought it would only get better from that point. The problem is, Kaden also had botox injections a month or so before he got his pump. The injections loosen targeted areas and last about 4 to 6 months, which is where we are now. As the botox wears off the worst of his tight muscles have started to regress and become tighter. This however makes me feel a little better because it means the pump is still working, we just haven't gotten to the right dosage yet.

The good news is that we can continue to get botox injections in the muscles where the tension has gotten worse. Then, as the baclofen starts to loosen those areas more, we can back off with the injections. The one thing this neurologist is big on is making sure that Kaden is comfortable. Being a movement disorder specialist, I think she better understands his needs and that really has Miki and I encouraged.
An appointment like yesterday is the affirmation we needed to know that we are on the right path with his treatment. Miki and I see Kaden everyday and it's hard to see the gradual changes in his body. When someone like his PA sees him only once or twice a year they can really see the difference. It's good to hear others say how well they think he's doing and it definitely gave us the boost we needed.

So... we press on! We are waiting to hear from his physical medicine doctor about getting a couple of botox injections in the areas he needs them. Hopefully we will get those this month. We also continue to push with the increases in his baclofen and keep working him hard with therapy. The progress is slow, but it's still progress. Kaden has always worked hard with the challenges he faces and we couldn't be more proud of him.

Kaden Turns Six

Happy Birthday Buddy! Kaden turned six yesterday. We had a party with Miki's family on Sunday and Keden really enjoyed all the attention. He always loves seeing his cousins and the chaos of all of them together with he and his siblings.



We've had a new addition to the family since the last time I posted. Madison "Maddie" Stark was born on February 11th. Kaden, Kylie and Jacob seem to like her a lot and all of then have handled the transition really well thus far. Kaden took a picture of him and Maddie to school last week and boy was he proud to show it off. But, I wouldn't expect any different from our Kaden man.

As Kaden turns six, I think back to all that he has been through and am grateful for where he is now. He's a happy, intelligent, fun kid. He has been improving with his Dystonia, all be it VERY slowly over the last few months. It's good to see progress, but frustrating that it comes so grudgingly. He takes it in stride and continues to do things that we haven't seen for a long time, if ever.

His speech is probably the most noticable difference. He has been very limited in his speech over the last 4 years. We were lucky to get one or two words at a time and now every week he spews out a sentence of 4 or 5 words. The physical improvements have slowed. We upped his pump medication two weeks ago and are going to try and push to increase on a more regular basis until we see more noticable changes in his tightness. The problem is that going to fast may make him too loose in places like his face and neck, causing problems with eating. We want to avoid that at all costs.

Overall he's doing well. We see his neurologist next week and I will post an update after that appointment.

Making Progress

Hope everyone had a great holiday season! We had a very nice Christmas and got a chance to spend time with both Miki's family and mine. The kids of course are all spoiled rotten from the holidays. Overall though, the kids were good.

Kaden had a good Christmas. I always worry about him around the holidays. Not only the interaction with all the kids and adults and the risk for catching a cold or the flu, I also worry that Kaden doesn't get to play like all the other kids. He seems to enjoy everything at the holidays but I always get a little depressed when I see all the cousins and friends playing when Kaden really can't do a lot the things that the other kids are doing. It never seems to bother him though. I guess his dad just has get over it.

Anyways, Kaden has been doing well. He has been talking a lot. More words and more words strung together. He has been progressing in physical and occupational therapy as well. His left hand has become significantly more accurate and his sitting is improving. Now that his ankles are not as tight he is able to keep his feet flat on the floor more easily which gives him a better base to work from. The progress is slow but it is still progress.

We are still fighting the reflux issue. It has improved though. We think it may be related to the abdominal binder he has had to where to keep the pump in place and tight to his body. This along with the loosening of the muscles may be amplifying his reflux. Hopefully we will be losing the brace soon and we can find out for sure if that is the problem.

Hope everyone has a great start to 2011! Take care.

Smarty Pants

Over the last couple of weeks Kaden has continued to do pretty well. I went to his IEP meeting at school and am very proud of how Kaden is doing in school. Miki and I have always known that he is a smart kid, and it feels good to have that validated by his teachers and therapists. Kaden cannot communicate as well as most 5 year-olds due to his condition. This makes it difficult to assess his abilities. His teachers at school have had trouble with this but for the things that they can assess he is really doing great. One of the things they do in Kindergarten is see if kids know their phone number and address. I remember working on this with Kylie the year she went into Kindergarten and she eventually got it but it took a while. Miki and I have never worked on that with Kade. The first time his teacher asked him, he knew all of our phone number and the street number of our address. It's amazing what he soaks up. If we can just keep improving his communication, I know he will continue to wow us.

We also met with the neurosurgeon this past Friday. I have not been real happy with the way things have gone since the surgery. However, the issues with the pump and the spinal fluid leak seem to be getting better and the neurosurgeon said they are not unusual issues. The only thing we have been having trouble with over the past couple weeks is Kaden's reflux. He's always had a slight case of reflux. Since he had pneumonia it seems to be much worse. We are hoping that it is due to the amount of antibiotics and other drugs that they pumped into him while he was in the hospital. We spoke to his pediatrician and have decided to give it a few weeks to see if it settles down before we look at medicating him for the reflux. Miki and I are very reluctant to start him on new medications unless they are absolutely necessary. He has quite a regimen of drugs as it is.

Overall, things are getting back to normal. Kaden is continuing to improve his movements and his muscles seem to be loosening with the pump increases. We have spoken to the physical medicine doc and along with the recommendations of his therapists have decided to increase his dosage again. We are waiting to hear back from the doctor for an appointment time and will hopefully get it in before the holiday.

Hope everyone has a great week. Take care.

Merry Christmas!

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Getting Better

After a much more subdued week, things are starting to get back to normal. Kaden went to school on Monday and Tuesday and had pretty good days. Miki took him to the doctor today for a follow up and he is still a little raspy in the chest but overall looked good. We are still fighting the spinal fluid leak in his lower back by having him lie down every two hours or so. What a pain! Kaden is not much for laying down when he is awake. He always wants to see what's going on. The neurosurgery physicians assistant told us it could take several more weeks for that to heal. We see the actual neurosurgeon in a couple weeks and it will be interesting to see what he has to say.

We were in Roscoe and Rockton for Thanksgiving. Lots of food and our two great families made for a very nice, relaxing day. Hope everyone had a Happy Thanksgiving.

Spirit of Battle

I've never been much into the meaning of a names. However, when you google the name Kaden there are two meanings that show up and they are so fitting to our Kaden. The first is "companion" and I cannot imagine a better companion than my big man. The other which is even more fitting is "spirit of battle" or "fighter". Boy did we see that in the past week.

Last Saturday the morning started as usual, the kids had breakfast and everyone is ready for a relaxing weekend. About 11:00am Kaden started to complain in his chair. I took him out and as I did Miki noticed something on his back. We took him into our room and noticed a lump about the size of a golf ball under the incision scar on his back. We were absolutely frantic. We called his phys. med doctor and the neurosurgeon. The phys. medicine doc called back right away and she immediately told us to calm down that this was not an emergency. Whew! So what is it?

She said it is rare but Kaden is leaking spinal fluid. My first thought is, "That's not an emergency? Don't you need the spinal fluid to stay where it belongs?". She said it is a rare occurrence but they have seen it before. The incision on the inside is not quite healed up. It is not an emergency but it could be causing him to have a pretty nasty headache. So, now Kaden has to alternate sitting and lying down every hour or two, probably for the next couple weeks and take a medication to decrease the amount of spinal fluid he produces. Miki and I can't help but feel like, "How many more rare things can one kid endure?"

Well, we calmed down and decided we'll just have to deal with it. Before we get him off the bed Miki notices that he feels feverish. Can that be related? So we call the doctor back and she says no. We go through the afternoon and he starts to look worse and gets sick about 3:00pm. We talk to the doctor again and she says it is not related. Well now what. During the afternoon he starts to cough a little and we realize he has the flu. We got him to sleep early, he got sick several times over the night and wakes up looking much better on Sunday. He eats a very light breakfast and lunch and things look better. About 3:00pm he starts to spike a fever again and also starts throwing up again. Arghhh! We decide to keep him home on Monday and make an appointment to see his pediatrician on Monday afternoon. Monday goes much like Sunday except no throwing up.

We go to the doctors office, she checks him out, does the swab for strep and it comes back negative. She says his lungs sound good but he looks like hell. The doctor sent us to Children's Hospital clinic for a chest x-ray to rule out pneumonia and says it's probably viral. However, she also says because of Kaden's history and underlying mitochondrial illness if he continues to get sick we may need to take him to Children's Hospital. So we go for the x-ray and low and behold he has pneumonia. Off to the hospital.

We get to the hospital and they send us straight back into the ER. Within half an hour they decide to admit him. It's now Monday 5:00pm and the IV's are running antibiotics and fluids to get him some nutrients. At this point things get a little tense because with the underlying mito disease Kaden is susceptible to a stroke when his body is so severely stressed. Because of this we have an emergency protocol that is followed to give him medicine that will keep him from having a stroke and if he does it can actually reverse the affects. That being said he gets through the night and looks a little better the next day.

On Tuesday, we saw more than two dozen different doctors. Residents, neurologists, geneticists, you name it. Everyone wanted to see the kid with the rare mitochondrial disease. While the attention is good because we now have a lot of people looking out for him, he also isn't getting any rest. They decide to do an EEG to see how is brain activity is and it came back normal. The geneticist also schedules an MRI for Wednesday morning to make sure that nothing has changed and because they say it can give insight into how to treat him. At this point Miki and I aren't noticing any neurological change in Kaden. He just looks exhausted, as most people with pneumonia do! Tuesday evening an anesthesiologist showed up and said that they planned on putting Kaden completely under for the MRI..... Now there are alarm bells going off in our heads. Whenever Kade is put under sedation he tends to be sick for 1-3 days. That is not what we need right now!

Miki and I ask to talk to his treating doctor and tell her that by no means will they sedate Kaden for anything. She says lets postpone the MRI to later on Wednesday and talk as a group with neurology and genetics in the morning. Well, we have our meeting in the morning and genetics says that they need the MRI to be sure that they are treating Kaden correctly for the next time he may end up in the hospital due to an illness. My feeling is, we need to make sure he makes it through this illness first and your clinical, academic study can go pound sand! Thankfully the treating physician agreed, the geneticist relented and the MRI was canceled. I know they all have Kade's best interest in mind but there has to be a point where his immediate health comes before planning for the future. We know Kaden's condition is rare. Only 6 other cases have been confirmed worldwide but I only worry about this one case. He's not going to be anyone's guinea pig, ever!

By Wednesday morning Kaden started to turn the corner and looked a lot better, he was livelier and he was keeping his food down. Aside from the two IVs he had, one in the hand and one in the foot, he was starting to look like himself. Thursday they took him off the IVs and went to oral medications so they could observe him for 24 hours or so, and by 3pm on Friday we were headed home. For the most part he is acting like his old self, just tired. He's sleeping now and hopefully will sleep through the night in his own bed. We NEED a relaxing uneventful weekend.... for starters. Maybe a relaxing uneventful 6 months would be good. Not likely in the Stark house.

Well, we're all home now. I would like to thank my parents for coming up and spending the week with Kylie and Jacob. Thanks to Kim and Brad for taking in Kylie and Jacob on Monday night, I don't know what we would do without Miss Kim!  And also thanks to the breakfast club for the cookie basket and the wonderful meals the last three nights. Cox your mostacolli kicked ass. Seriously though, we are overwhelmed by the support we get in times like this. We have the greatest friends and family and we love you all. Thanks again.

Scary Week

Over the past few days we have had a bit of a scare with Kaden. Miki and I have been noticing that the pump Kaden had installed looks like it's sticking out further than in previous weeks. We chalked it up to reduced swelling after surgery and thought we would ask the doctor at today's appointment. However, on Tuesday when I picked Kaden up from school his physical therapist was waiting for me and said that the pump was really sticking out when Kaden sat down. When I saw it I thought, that just doesn't look right.

The pump was inserted below Kade's rib cage on the right side of his abdomen. There isn't a lot of room between his ribs and the top of his hip. And, he's kinda scrawny. Don't get me wrong Kade is a big 5 year old. He eats like a horse, but also burns way more calories than the average 5 year old. His muscles are contracting sometimes all day, every day. That's one heck of a workout.

Anyways, I took Kaden to therapy straight from school. When we arrived, there was a physical therapist who Kaden has seen before at the front desk. She and I have talked about the baclofen pump several times before as she has worked with several kids that have had one. She took one look and said, "Yeah, that's doesn't look normal. The pump should stay flush with his body and it's almost at a 45 degree angle pushing out from the top." When Kaden is sitting, the top of the pump pushes out far enough that you could put a couple fingers behind it. Needless to say, I am now completely freaked out. I put Kaden back in the car and we are about to head off to Children's Hospital. Before we make it out of the parking lot Ann (the therapist) comes out to catch us because she has called Kaden's doctor on her cell phone and the doctor wants to talk to me. Kaden's doctor calms me down and says there is no emergency, they sometimes see this in smaller kids. She tells me to wrap him with an ace bandage and she would take a look at it on Thursday. I cannot say enough about how grateful we are to have such a great therapy place. Thank you, Ann!


So Miki and I were biting our nails until his appointment today and I was sure that we would go to the appointment and they would end up admitting Kade for a surgical repair(our worst nightmare). The doctor came in, took a look and said the pump has definitely loosened in the pocket. While she didn't throw the neurosurgeon under the bus I could tell she wasn't overly thrilled with the job he did with the insertion of the pump. Kaden's incision is right at the top of the pump. That is also where they cut the muscle to make the pocket. If you can imagine, think of a hockey puck in a small zip lock bag that it barely fits into. When you move that hockey puck back and forth the top pops open. The doctor said that generally the surgeon puts the incision an inch or two above where the pump sits. Hence, it would be like a hockey puck in a taller bag that doesn't put pressure on the enclosure. At this point I am NOT happy.

The doctor called neurosurgery and they came down and took a look. First they assured me that he wasn't in any danger or anything and that they would likely not do anything surgical unless we started to have complications. You know, like the pump flipping over. WHAT?! Flipping over!..... I didn't know that was even an option. I guess I should be happy he didn't say a complication like, "the pump popping out". Unbelievable!

So, what we have decided to do is keep Kaden's abdomen wrapped for at least 4-6 weeks and see if the muscle will form some scar tissue to help hold it down. We now have an appointment with the neurosurgeon in December for a recheck. He better have a good reason for the incision position or I may strangle him. The guy supposedly does these all the time. Now Kade has to suffer through a wearing a wrap for who knows how long.

Well, at least the pump is working! He has loosened a bit more and the doctor did increase his dose again today. It will be interesting to see how this increase effects him. I should say that even though I am not happy about recent events I am ecstatic that we are not in the hospital awaiting another surgery and that Kade is still experiencing some good results from the medicine. Have to try to see the bright side, right? And, yes, I will try to restrain myself when we meet with the surgeon next month.

Hope everyone has a great weekend. Thanks for letting me vent.

Halloween

We had a great Halloween weekend! Kaden was very proud of his airplane. Again I think he likes all the attention he gets more than being in the plane. We all went to a Halloween party at New Berlin Therapies where Kaden does his therapy. They have a great haunted gym and Jacob and Kylie really liked the magic show. NBT is a great organization and we are lucky to have them.

We trick-or-treated for about an hour and 45 minutes this afternoon. I was pooped. Trying to keep up with Jacob who was, "Flying like BUZZ!", was difficult to say the least. Thankfully Kylie helped a lot with Jacob. Thank you to Granna and Gramps for holding the fort so we could all get out for trick-or-treating for a little while.

Kaden Update: Kaden has been kinda tight the past 4 or 5 days. I think some of what we have been seeing is Kaden fixing in positions. As his muscles loosen his body doesn't feel right to him. While he may be more comfortable he's not used to his muscles not being really tight. So, he tenses on his own to feel what he thinks is "normal". The good thing is that if he is "fixing" that means he can use those muscles without the involuntary tension and therefore can retrain them as he gets used to not having the involuntary tension.We'll see how the next week and half go. Kaden has another appointment to see the doctor a week from Thursday. Probably another increase in dosage and see where we go from there.

Hope everyone had a safe and happy Halloween!

Appointment #2

Well, this past week has had ups and downs. Kaden was very tight on Sunday and Monday of this week. Miki and I know there will be highs and lows in Kaden's tone so we need to remind ourselves that it is only the beginning. Because of the medicine and the muscle tightness Kaden has had issues going to the bathroom and when he gets backed up he gets even tighter. Turns out that that was the issue earlier in the week. He has been much better since Wednesday morning.

Kaden had his second post-op appointment today. Thanks to Papa for going with. It's always easier having another adult there for the appointment. He only saw the nurse today and she increased his dose again. Now we are up to 190 micrograms every 24 hours. This really doesn't mean anything to me, but, I did find out today that there are kids that receive 400-500 micrograms a day. So, that being said, we are already seeing some results and he still has a lot of room to increase.

One issue that has arisen since the surgery is some weakness in his voice control. When Kaden gets tired around late afternoon his voice starts to stutter and break up. We had heard this when he first started getting tight two years ago but it didn't last long. It always freaks me out. We got a chance to see his speech therapist today and she said it may be the muscles starting to loosen and fatigue from trying to use those muscles that are now somewhat loosened. She was very thorough and called Kaden's doctor this afternoon and got confirmation that it wasn't anything to be concerned about. We just need to be vigilant in keeping an eye on his eating and making sure that he is not struggling to chew and swallow as the muscles loosen. It's kinda like learning to eat and talk all over again but he is doing well so far.

Kaden has been going to therapy all week and has done well considering the incision and the slight changes in muscle tone. Next week we are adding an hour of physical therapy which we have to fit into an already hectic schedule. Hopefully we will find the time to add a third the following week. We'll see.

Kaden got to where his costume for the first time on Wednesday at school. We are going to a Halloween party tomorrow night at his therapy place and trick or treating on Sunday. We'll be sure to post some pictures. Kaden is always very excited about his costume. Hope everyone has a Happy Halloween!

First Post-Op Appointment

This morning was an interesting morning in the Stark house. To start, Miki woke up with a stomach flu. Then I had to wake Kaden up about 7:00 AM to get us out of the house by 7:30. The earliest he's been up since the surgery has been about 9:00 AM. Needless to say he wasn't real thrilled. Well, we got him fed and the other two ready for their day and Kaden just didn't seem right after breakfast. I chalked it up to waking up early for the first time in a week and didn't really think anything of it.

We arrived at Children's Hospital right on time. Kaden was his usual charming self and had the two nurses enamored with him in the first 5 minutes. We were ushered back to a room right away. I got Kade situated in the room but hadn't taken his coat off yet. I had just sat down in the chair next to him and he gets sick all over his tray, coat, chair, and the floor. The two nurses are no longer enamored, but still very helpful. I clean him up and he smiled and laughed for the remainder of the appointment. The rest of the day he was smiling, laughing, and silly. Ate lunch and dinner and no problems. I guess 5yr olds just get have to do this sometimes.

With all of that behind us, the doctor comes in and checks him out. His incisions look really good and I explained that the tension in his hips is definitely lessened. Kaden's most consistent tension has always been in his adductors, which are the muscles on the upper inner thigh that pull your leg in. His knees are usually locked together. I always think of it like prying a clamshell apart. This week however I can push his legs apart with one finger and they stay apart. QUITE an improvement! The doctor was pleased and she adjusted the dosage up a little more. We will go back next Thursday and they will likely ramp up the dose a again.

Kaden is going back to school tomorrow. I had teacher/parent conferences with his teachers tonight and he is doing really well. It is an adjustment for the Kindergarten teacher to assess him, but she seems to be doing an excellent job. He knows almost all his alphabet and numbers and of course his favorite part of class is getting up in front of the group as a helper or to answer a question. I'm not sure where he gets that from as Miki and I were both terrified when we started school and would do anything to not have to be in front of the class. He is lucky to have the teachers that work with him. They are terrific and really seem to understand what Kaden needs.

Well I've rambled on for long enough. Thank you again to everybody for the well wishes.

Baclofen Pump

I am starting this blog because of all the support we have received over the last couple years for my son Kaden. We wanted to have a place to document his progress and let friends and family know what's happening with Kaden and his fight with Dystonia.

My 5 year old son Kaden is battling a Mitochondrial Disease. There are 6 documented cases of this particular genetic mutation world wide as of June 2010. The disease can have various effects from life threatening to fairly benign. In Kaden, the mutation has caused a lack of energy to a small portion of the inner part of his brain. This lack of energy has caused damage and the most profound effect on Kaden is a condition called generalized Dystonia.

Dystonia causes the involuntary contraction of muscles. A doctor once told my wife and I that the contractions are similar to having a cramp in a muscle. Kaden can have 10 or 12 muscles(sometimes more) contracting at once. These contractions can last a couple hours or several days. It moves around and affects muscles all over his body.

On October 14th Kaden had surgery to install a Baclofen pump. This device is about the size of a hockey puck and has been inserted just below his rib cage on the right side of his abdomen. The surgeon made about a 6 inch incision to install the pump and then a 2 inch incision at the base of his spine to thread a catheter up to the base of his neck. He then connects the catheter to the pump and closed him up.

The pump will drip a muscle relaxer called Baclofen into the spinal cavity and from there it spreads throughout the body. At the very least the pump will eliminate the contractions. Best case scenario, when the contractions are removed, with therapy Kaden may be able to sit on his own, walk on his own, and do all the other things that a 5 year old is supposed to do.

Today was Kaden's first full day home from the hospital and he had a great day. It was the fourth day after the surgery and I didn't see him wince one time. If I had those incisions I would be miserable, but not Kade. He had a smile on his face all day. He is spending this week at home with grandparents and dad(who is working from home). Kade may go back to school as early as Friday. This Thursday he has an appointment with the physical medicine doc to adjust the pump settings. We are already seeing results as his legs seem much more loose today. It may take several weeks to get the pump settings optimized but the initial results are very encouraging.

Thank you to all of our family and freinds. We are truly blessed to have such wonderful people in our lives who give the support we need to help Kaden fight his battle. We'll give another update soon. See ya.