Merry Christmas!!

I meant to update long before now, really I did, but due to the crazy holiday season it hasn't happened until now. I know some have been waiting to hear how our trip to Shriners went. Please forgive me for waiting so long.

To start with the most anticipated news, Shriners was AWESOME!!! While there we were able to meet with two specialists, a neurologist and an orthopedic specialist. Jeremy and I were very impressed with both doctors and their genuine concern for Kai and his future. While there they did xrays of his spine legs and feet. Overall everything looked good except that his bones don't look as dense as they should. So on January 12th we are heading to the U of U for a dexa scan to see how bad it is. If this test comes back abnormal they will start Kai on bisphosphinates. Which is what they give older women with osteoporosis. We are hoping that maybe this will help alleviate his leg pain and then we can take him off of his other medications.
The best part of the whole visit was being reminded that we are not financially responsible for anything that Kai has done in that hospital! Whew! That really helps to boost morale, especially when wheelchairs can run thousands of dollars! Speaking of wheelchairs, Kai has an appointment in March to be fitted for his first chair. I have mixed emotions about this, but overall I am excited about the freedom it will give him in the long run. We should get it just in time for summer vacation, which will work out perfectly. Well I'm sure I could go on and on but I won't. Just know that it was a wonderful experience and we are happy with the care Kai will be receiving.

We have had a wonderful holiday season with the best day being today. I love seeing my kids faces when they see what Santa has brought them. We have had a great day playing, watching movies, and just spending time together as a family. I promise to update again soon about everything else that is going on, but for now I'm going to let Ainsley do my make up. Merry Christmas!!!

Shriner's Hospital Tomorrow. Stay Tuned.....

I once again have been a huge slacker and frankly just not in the mood to update. The past month has been pretty boring around here. We kept Kai home from school for awhile until is swine flu vaccine was active. I am pretty sure that I will have a permanent knot in my stomach the entire winter. We were so lucky and blessed last year that the worst illness Kai got was strep throat. I am really worried we won't be so lucky this year. So after consulting with nurse Grandma we have decided to keep him home from everything but school until flu season is over. If things continue to get worse at school we will keep him home from there also.

Unfortunately we had to reschedule his appointment at Shriner's hospital, due to illness. We are now scheduled for December 16th and are looking forward to meeting with the specialists there. Maybe they can shed some light on why my 5 year old is having migraines.

We had a pretty low key Halloween due to my recent germaphobic tendencies, and are really looking forward to the holiday season. I will post pictures soon from our trick or treating adventures, or lack there of.

Somewhat toothless wonder

My brain is not wanting to think right now, so I am just going to post a few pictures and you can guess what happened before Kai went to bed tonight.

Five minutes BEFORE bedtime





Five minutes after bedtime


Two teeth in one night! My baby is getting so big, I hate it!! Oops, guess no need for guessing, oh well. Have a good night and I will try to update more about our week tomorrow.

Bad Mood

I have been in a pretty bad mood the last week or so which is my excuse for not updating in so long. However, since I have a saint for a mother-in-law, my mood has changed for the better. So hopefully I can have a better attitude now and blog more frequently.
Thankfully the last couple of weeks have been pretty boring around here. We have gotten some much needed rest after our crazy August. The only thing Kai has had is an ultrasound last week of his kidney's and bladder. Thankfully no major problems were found they just want us to repeat this in two years. We have an appointment with the urologist again in November where they will run a couple of other tests to make sure everything is working right. They are being very thorough since we have no idea how this disease will progress. Which is very comforting for us to know we have some good proactive physicians caring for our little guy.
A big piece of good news is Kai was accepted to Shriner's Hospital in Salt Lake!! This is a huge blessing since any care he receives their is covered at no cost. This includes any doctors visits, therapy, surgery, etc. He has an evaluation scheduled October 21st. We are counting down and hoping that many good things will come from this opportunity.
Kai is continuing to enjoy kindergarten and seems to be making lots of friends. We are hoping to meet with his teacher and principal in the next week to explain more about Kai's condition, and see what we can do to make this a positive experience for him.
Other than school we hope to have a very laid back couple of weeks with only two therapy visits. Here's to hoping right?

It has been a very emotional week. With Kai's first day of Kindergarten and Ainsley Mae's baptism I am an emotional wreck!! I will write more details later but thought I would post some pictures from our big week.

The past month we have been busy taking a "staycation", celebrating Ainsley's birthday, attending Kai's therapy & sleep study, going on dates with Grandma and Grandpa, and getting ready for school to start. We are going to continue the busy trend this week with four doctors appointments, physical therapy, kindergarten testing, first day of kindergarten, an anniversary party, Ainsley's baptism, and a family dinner. I don't know if that made your head spin, but it does mine!

Unfortunately the past couple of months Kai has been having some "urological" problems, if you catch my drift. At first we thought maybe it was from the trauma of me being incapacitated, however, it has continued to be a problem. So after consulting with his pediatrician we have decided to take him to Primary Childrens on Tuesday to see a urologist. More info to come following the actual appointment.

Another bummer is Kai's back and trunk muscles have gotten worse over the last couple of months. As a result he has a hard time sitting for long periods of time. We are trying to see if there is an adaptive seat we can use, if not we are going to have to resort to a wheelchair. YUCK! Not that he would be in it all of the time, just during sacrament meeting, and maybe sometimes when they are sitting in school. It would also come in handy when we are shopping or going for walks. Strollers just don't provide him enough support.

On to some more positive news, Kai starts kindergarten this Thursday! I will be sure to post some first day photo's. Ainsley started on the 20th and is loving the 3rd grade. She will also be getting baptized next Saturday. Her dad and I are so proud of the choices she is making. We are so blessed to have her as our little girl. I definitely would not have made it through the last few months without her!! You can also look forward to pictures from her special day.

Below are some pictures of our happenings over the last few weeks.