Thursday, January 29, 2009

Comic Relief

Kai has been in rare form lately. About a week ago or so he was watching his grandma water her plants. He ask her why she didn't just build an aqueduct, and proceeded to explain what an aqueduct is and how it works. Can you believe he is only four almost five?!
Then yesterday we all of a sudden heard him start screaming and crying. Jeremy ask him what happened and he said,"Brady whacked me with a banana!" I could not stop laughing! Jer was getting mad at me cause I was making it impossible for him to discipline Brady. I am still laughing about it.
Finally today Kai came into the kitchen and started telling me about how grownups get hair on their arms that they don't want. I wasn't quite sure where he was going with this. Then he said they can use "Smooth Away" and not have to worry about cutting themselves with razors, and when he is a grownup he can use it. The kid did a better job selling the product than the people in the commercial! Thank goodness for my daily dose of comic relief.

Friday, January 23, 2009

Happy Birthday Abby J!!! (1 day late)

Yesterday was a big day in our family, it was Abigail's 1st birthday! For me it was a very sad day. My baby is not much of a baby any more. She also seems to know this, today she is acting so big and even had her first Popsicle. Yes I know it is only forty degrees outside. Kai and his sidekick Alison snuck in the house and took some Popsicle's, so then it was just the trickle down effect. She was hilarious and wasn't sure whether to laugh or cry.
I took the three youngest to see the pediatrician. They are all growing like weeds. Also Dr. Cornish said that this year with Kai is a big one. We need to show him that he can do anything he really wants to. We can't have him going through life with a woe is me attitude. I don't thing this will be a problem with him though. It is something I need to keep myself from doing. Yesterday was just one of those days, with Abby turning one and talking to Dr. Cornish about Kai, lets just say I was weepy. Thankfully I have a wonderful aunt who called on just the right day. I also have a wonderful husband and great kids who make me smile.
Example: Last night Ainsley and I were talking about baptism. Since she is turning eight this year she has been asking a lot of questions. She ask me if the water in the church was better than anywhere else. I told her no that people can be baptized in a lake, ocean, etc. She then ask why every part of the body has to be under the water. I told her that it symbolizes all of our sins being washed away. Then she proceeded to ask me if they drain the water when you are done. I told her "yes", then she said,"Oh yeah, well you wouldn't want your sins getting all over someone else." I could not stop laughing!! I was reminded that she is still only seven not twenty.
Needless to say my day ended up o.k.


The best Popsicle face ever!

My sweet girl.

Tuesday, January 20, 2009

Well I am actually getting better at posting more often..hopefully I can keep it up! Kai had physical therapy yesterday for the first time in a month and a half. It was the first time I have been able to talk to Kelly since Philly. He was as flabbergasted as I was hearing the news of Kai's diagnosis..or lack there of I guess I should say. Fortunately it doesn't change to much from the PT standpoint. We got him scheduled for an occupational therapy evaluation in two weeks. This was suggested by the OT in Philly. Kai's Grandma and I have thought he has needed OT for a long time. Kai and Kelly played the Wii Fit yesterday. I thought that since he didn't do anything other than the balance games that today wouldn't be so bad. Well I was wrong!! It has been an awful day. He is just so exhausted! When he woke up this morning he was so pale and after a matter of seconds of being in the car he was asleep. Then we got home and he just wanted to rest. This is so frustrating to me. I hate that after he is remotely close to being a normal four year old he can't function for at least a day. Thankfully the other days he is as happy and sweet as can be. If only I could be more like him!
Kai continues to love pre-school and is doing very well. He is loving his batman stuff he got for Christmas, and is so glad to be home with his brother and sisters. I have never seen him so lost as he was in Philly with no one to play with.
I just want to take a minute to thank my wonderful support group of family, friends, church members, and especially my mother-in-law, Cheryl. These people are always so willing to help and show so much concern for Kai and our whole family. There is no way we could make it through without them and the constant encouragement from Cheryl. Thanks again!

Thursday, January 15, 2009

Well we made it home safe from Philly late Tuesday night. Kai was an absolute angel on the flight home, he slept. When we landed in SLC it took us a few minutes to get him to wake up. Other than an exhausting day at the hospital we had a wonderful trip. Thanks again to Becky and Tuan for being such great hosts. We now just continue our journey that started three and a half years ago. The plan for now is to continue treating him symptomatically and hopefully at some point we will get a firm diagnosis.
Kai is very glad to be back with his brother and sisters. We just aren't as much fun I guess. Till next time.

Monday, January 12, 2009

Philly 2009




There are too many pictures to put on here individually so I have made a little video. Enjoy!!

P.S. Just mute the music player at the bottom of the page so there isn't any interference.

Greetings from Philly!!

Since I know life will be crazy when we get home I am posting from Jer's aunts house. We got here Thursday afternoon and saw Dr. Bonnemann on Friday. It was an interesting visit and definitely not what we expected. They finally finished all of the testing on Kai's skin biopsy. From these results and the genetic testing they have come to the conclusion that he does not have Ullrich's. Dr. Bonnemann said that the collagen VI deficiency is a secondary problem. So in other words we are back to square one!! While I was happy to hear he doesn't have Ullrich's in a way I am devastated that we have to start this process all over again. For the past two years we have had an idea of what to expect in the future and now we have no idea. We do know that he has a mild myopathy and a connective tissue disorder, we just don't know which one or what this means for his future. While at the hospital they had us meet with an occupational therapist. She told us we need to have him in occupational therapy and he needs to see a developmental pediatrician. Hopefully with these two things we can make some progress with his sensory issues. Please keep Kai in your prayers as we try to find out what is wrong with him. He is such a smart sweet boy and I don't want that to change.
Thankfully only one day was spent at the hospital. On Saturday we went with Jer's Aunt Becky to take her daughter back to Syracuse University. We then drove to Niagara Falls and spent the night. Sunday we headed to Palmyra, NY to see some of the church sites. It had been ten years since I participated in the Hill Cumorah Pageant. Driving up to the hill brought back all those feelings and memories.(Anna if you read this you will know exactly what I mean.) It was very special to share with Kai all of the important events that took place there. We then drove back to Becky's, and have been just hanging out since. We go home tomorrow night and begin our new journey as a family. Thank goodness we have lots of family and friends to help us along the way.
We hope that everyone had a wonderful and safe Holiday Season!! I will post pictures from our trip and the holidays soon.