Todays news

Kourtney had her heart Echo today. It was determined that she has Hypertrophic Cardiomyopathy (thats what my Bro. RW has). It means that her muscle is to thick and it is harder to pump the blood through the arteries. They say that it is not too bad yet, but will naturally progress as time goes by. No meds are needed yet, she will just have to be followed and they will later decide what to do. They feel that her heart condition kind of takes a back sit to the neurological problems right now. I was not really shocked by the finding but was blind sided by "You need to get tested also, even though you were tested while young the disease can show up at any age". and then we get to hear "you need to get your other two children tested, once a year until they are adults" and "we need to do some genetic testing and see how strong the gene is". Poor little girl, I hope that the bad news will stop coming. I guess all that I can do is hope for the best and pray for the strength to handle whatever we need to.

Parent Teacher Conference

The time has come, parent teacher conferences again. Kadrey is doing well, her teacher told me that over the past few months she has seemed to opened up and is more actively participating in class time. The thing that she is getting the lowest mark on is homework (oops). Its not that she doesnt understand it, we just forget to do it some days (ok lots of days) - life gets crazy, you know! Jaxon is also doing well - when did they start having PT conference in pre-school? His speech is not really improving and he doesn't seem to be understanding the whole letters and/or numbers concept - homework in preschool too?!? but he has wonderful social skills and is friends with everyone in his class. He is very good at sharing and likes to make sure that everyone is having a good time, he loves to make people laugh and his teacher tells me that he can adapt to any personality and age group, he brings happiness with him and on the days that he misses school (on days we have to go to salt lake for Kourtneys appt.) everyone asks about him. She says that social skills are one of the most important things to learn at this age. I am so proud of him and tonight while we were working on math homework he said he was having fun and he seemed to be understanding it. Plus, the book fair was buy one get one free so the kids really scored at that (yay)!)

and again

Sorry I really am not doing a very good job at keeping everybody updated. Kourtney was in the hospital again, she went in on Friday of last week and she came home on Thursday. She is just really having a hard time with her airway. I think that the main reason we keep ending up in the hospital is because when it comes down to it nobody really knows what to do. The doctors try and they do the best they can, but her syndrome is so rare and there really is no direct path to take. I think i have had my fill of the medical field for a while, the Doctors, nurses, and Respitory therapists are starting to drive me crazy. They found that she has an UTI (urinary tract infection) and so she had to have an ultra sound on her kidneys. Apparently she has gas in one of her kidneys (gas develops from infection) there is no way to treat it so they just fight the infection (with antibiotics) and then in 10 days they will do another ultrasound. They also gave her too much of her Vitamin D and that has been discontinued for at least 10 days - they have to draw blood to test this also- she was only supposed to get 200 units and they gave her 2000. I am just glad that happened with her Vit. and not one of her more powerful meds. She seems to be doing a lot better now and we can only hope that the pattern of hospital stays have come to a close (at least for a few weeks:)

Work Hard?!

You think you work hard? Well, this is one hard job. I don't think anyone works this hard, it just wore him right out.

Yay...my mini Tigerette

I am so proud of her. Kadrey did a little performance for a half time show at my old high school. She was a "mini tigerette" and it was so cute. She had practices for 2 nights and on the third night was her performance. A couple of years ago she was in a dance class and on the night of the pageant she totally frozen and she was the one in the group standing there crying while all the other girls tried their best to do the dance they had been working on for so long. Now I know that happened a long time ago but I could see it happening again, so I told her that all the people were there to watch all the girls and not just her and also the only time everyone would stare is if she was the one just standing there. She did her dance and it was so cute, she was really into it and seemed to be having a good time. She later told me that the reason she did the dance was because even though she was scared she didn't know which way she could run so she just had to do it.

She is the one kind of in the center, with the black long sleeve shirt and capris on.

Just a quick update

Just real quick I wanted to tell you that Kourtney is home again. She was able to come home on Sat. The joy was short lived after we were told that the Doctor could now hear a murmur in her heart that they have not heard before. So on Friday they did an echo, and an EKG - the results are not totally clear, but she has thickness and fluttering and her heart is working harder than normal (very possibly what my older brother has). She has to go back to PCMC for more testing (by a cardo. Doc and not just our pcp). They are doing it all outpatient (well that's the plan for now anyway) because she is attracted to all the elements at the hospital and her little body isn't great at fighting sickness. As upset as I was at first I have calmed (most of the time:) and I know that my baby is a very special spirit, and that Heavenly Father knows what he is doing, and I know she is loved by more then her imitate family. One day at a time right?!

Tongue

Kourtney has discovered her tongue. It has always been restrained. After they removed her "nam" (prosthetic palate) and replaced it with a more real and placed prosthetic she has found that it can come out of her month and now it always does. Everytime she coughs,or whines, or is board she sticks it out. It is one of the cutest things.

Booooo!!!!!!!!!!!!!!!

So, she was home for a little while. Last night (after my exciting post) she decided that breathing with mucus was to hard and turned "chalky" and keep setting off her monitors.So after a mid of the night suction trip she was admitted into McKay Dee. So here we are back in the hospital (at least it is the one closer to our house).

Yay!!!!!!

We are finally home. It took a lot of pushing on our part but we finally did it. Kourt is doing ok, we have to take her to the RT clinic at least once a day to get suctioned out,but we are home.