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.