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!