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.