I am going to try and be better about updating at least on a weekly basis. This week has been pretty uneventful. The only thing is on Thursday Kai woke up with a cough. Over the past few days he seems to have gotten a little worse. I can tell he is not feeling well because he sooo cranky! Hopefully by taking tomorrow off from school and other activities he can recover quickly.
Any time Kai gets a respiratory bug my anxiety goes through the roof. Because of his muscle weakness he can't produce a productive cough and so he is at risk for pneumonia. We felt very blessed that he only got it once last year and didn't have to be hospitalized. I hope and pray that this year goes as well as last, if not better.

It has been a very eventful week or so. Batman's I mean Kai's Grandma Mike came from Wisconsin for a visit. We all loved having her here for Halloween. Kai insisted on being Batman like his best friend Shane. They are two peas in a pod.
Halloween at the Wynkoop's this year was a little different than those in the past. The trick or treat bags were not very full because Kai only made it to maybe six houses, and these were ones without stairs. His stamina is just not what it used to be unfortunately. On the other hand our dentist is probably thrilled! However, I think we all still had a great time. After all Daddy was home!!
On Monday this week I took Kai to physical therapy. It continues to be a depressing event. Kelly, Kai's therapist, commented on how weak he is becoming. He is falling more frequently, especially as he get more tired. Kelly told us it is critical to keep him active this winter.
On Wednesday we took him for his six month follow up with his pediatrician. At these visits we go over his care plan and adjust his medications as needed. The positive thing that came from this is we were able to knock out one of his prescriptions he hasn't needed for awhile. So now he only has to take his Neurontin (for pain at night), Naprosyn (more pain meds), and Prevacid (for his reflux), each night at bedtime. On really bad days he may have to take an additional two medications, Tylenol w/codeine (for really bad pain), and Atarax (for his itchies as he calls them). Yes we keep our pharmacy in business! As you can see Kai has been a busy boy. As long as we can keep him from catching any nasty respiratory bugs we should not have any doctor visits and only have one PT visit before we head to Philly January 8th.
Well that's enough for now, until next time.


This picture is just too cute not to share.

Kai(Batman) and sister Ainsley(some sort of princess).

Not too much has been going on with Kai lately. Right now we have decided to go to physical therapy just once a month, due to cost and there isn't much they can do right now that can't be done at home. The key is actually doing it! I hate causing my sweet boy pain. We finally got Kai a much needed mattress. This seems to have helped his back pain.
I guess I didn't make much sense when I told Jeremy what Dr. Medne said. Because he called and spoke with her last week. She said that they are especially interested in Kai's case because his mutation occurred on a different gene than they have seen before. On top of this his presentation is much different than the other cases. So we will see what happens. Our trip to Philly in January should prove to be very interesting.

Biopsy Results

Last week I finally received a call from Dr. Medne at Children's Hospital in Philadelphia. She had the results from Kai's skin biopsy that was taken a year ago. Unfortunately we are right back where we started three years ago. The test results came back normal. She told me that they have about twenty kids like Kai, who clinically present with either Ullrichs or Bethlem yet their biopsies come back normal. They think where there are so many that there may be a third gene that mutates instead of just two as they originally thought. I am still confused as to what this means so thank goodness we have appointment scheduled with Dr. Bonnemann in January. So we will just continue to take it one day at a time. Until next time.

Long Awaited Update!!

Once again it has been way too long since I last posted. Kai has been a busy little boy! He has had some sort of appointment every week. Two weeks ago Kelly, his therapist, told me he thinks Kai's hip pain is from his soaz muscle tightening. This muscle is responsible for lifting the leg. The problem is it is very hard to get to. So when he is resting we are supposed to have him lay on his stomach propped up on a pillow. Hopefully by doing this we can slow things down a little.
Last Thursday we took Kai to see Dr. Pfeffer the pulmonologist. She thinks he may need his adenoids removed. She scheduled him for his yearly sleep study, which was last night. Unlike last time he did awesome!! In fact when he came home this morning he wouldn't let me take the sticky pads off. He thought they were cool! I had to do some bribery with the Wii. Those of you who know Kai know that he will do just about anything for a video game. lol.
School is still going well for Kai. He does seem to get frustrated when it comes time to color. He just doesn't have the strength in his hands to do it as well as his friends. So I think we are going to have to look into some occupational therapy.
I think this is about it for now...until next time.

I can't believe it has already been three weeks since my last post. Obviously a lot of things have happened, some good, some not so good. I will start with the good stuff first. Kai started preschool on the 18th and loves it. I think for the first time in awhile he feels normal. I think that has been the hardest thing for me is seeing him realize that he is different. He also was able to start physical therapy again. Unfortunately his hamstrings have tightened and he has lost some range of motion. This is really what we want to avoid in order to keep him out of a wheelchair as long as possible.
Today Ainsley was talking about Kai dying. It stinks having a daughter who is so smart and in tune with her parents feelings. I never know how to respond because I don't want to scare her or blow her off. I'm sure that when people look at him they think he will be just fine. However, this is not the case. He will not live to be an old man and it breaks my heart. Well enough depressing stuff for today. Until next time.