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.