BACK AT PRIMARY'S!

Kaidence had a busy day today. We woke up this morning early to get to PCMC to do our interview for the PCMC radio-a-thon. Before we left the house Kaidence started throwing up. She has thrown up all afternoon and started getting very lethargic and also feverish. She was not wetting her diapers and she kept throwing up all of her heart meds. Unfortunaly we have to have those rejection drugs and so we are back at Primary's tonight trying to get her rehydrated, medicated and find out what she has. She seems to be doing better tonight. She has not thrown up for a few hours. We are hoping to go home tomorrow.

I am still trying to get the slideshow and all 3 of the songs working. May take a little longer than thought.

SLIDESHOW PROBLEMS

We are having problems with the slideshow. Check back and hopefully it will be working later tonight. The music is no longer playing and we are missing pictures to it.

Thanks
Shauntelle

HAPPY 1ST BIRTHDAY KAIDENCE!!!

As I am sitting up working on Kaidence's blog at 12:30am on February 23rd. Mike has been trying to find her blessing pictures, but no luck. Kaidence is sitting with me. She decided that she should be awake as she brought in the big 1 year mark. A little weird since Kaidence never wakes up during the night, she is a great sleeper. She is in an incredibly happy mood as she eats her daddy's head phones. She has also pulled out her feeding tube twice since she was supposed to be sleeping. It is still out.

Last night for the first time I watched the birth video of Kaidence. My heart broke as I watched this sweet little girl being brought into the world and knowing what she would be going through. What a year it has been. We are so grateful for the many blessing and ultimately the many miracles that we have seen manifested in Kaidence's lifetime. We are so proud of her for the way that she has brought so much love, joy and meaning into peoples lives. She has brought us all a lot of perspective on life and what is most important. We are overwhelmed at the many kind deeds that have been given to us. For the fasting and prayers. I hope that we all understand the true power that they hold. The video above is for Kaidence and all of you that have given so much love and support. It is a small review for a big year. The music is from a CD that Kaidence listened to often in the hospital. These songs are very fitting of Kaidence.

Happy Birthday Kaidence and thank you for being your strong, beautiful self. We love you more than words could ever tell. Our family would not be complete without you and we are grateful that we have been blessed enough to continue holding you in our arms everyday. On Your Birthday we remember and thank the family that gave Kaidence her second chance at life. Kaidence you HAVE been a star shinning brightly ..... for the whole world to see!!!!

Love Always and Forever,

Mommy and Daddy

SERVICE PROJECT IN MEMORY OF IAN!

We went to Cardiology today and had another echo and blood draw. The echo still looks the same with the LPA smashed. Kaidence is trying to teeth. It's a hard on both parent and child when teething starts, but with Kaidence's extra thick gums as a side effect of the meds it is making it very difficult. As always, she is a real trooper. For those of you that watch "Good Things Utah" Kaidence will be a birthday baby on tomorrow's show. It will be on Channel 4 sometime during the 10:00 am hour. Look for her cute picture.

McCaden had a performance at school tonight. The kindergarten class did the hokey pokey and also displayed artwork that they had done. My mom came and watched Kaidence so both Mike and I could go with the boys. It was fun and he did a great job!!!

Also if anyone would like to help with a service project please link over from my blog to Little Ian's. His family will be collecting different items for both Primary Children's as well as the Ronald McDonald house. The Ronald McDonald house is where out of state families can live when they have a very ill child in the hospital. It is a blessing for many of these families. They are in need of normal household items, cleaning supplies, light bulbs..... This collection is being put on by Ian's family in memory of him as his 1 Year Birthday approaches. Please link over to his blog if you are interested in helping.

Yea!!!!! Spell check works again.

BAD NEWS BUT GOOD NEWS AS WELL!!!

Today we had a very busy morning. Kaidence had Cardiology as well as a swallow study. We always knew that we would have some bumps in the road. Kaidence's echo showed that her LPA (left Pulmonary Artery) was very small. They are afraid that it was damaged back when her original heart was so big that it collapsed her left lung. It was most likely smashed by her heart. They will take her in to have a balloon or stint placed in her artery to her make it larger sometime in March. They will have to do an MRI first to learn the severity of it. On a happier note her EF is still looking great and she passed the swallow study today. She passed for thin liquids to be taken from a bottle, sippy cup or cup. We may move to the sippy because she cannot suck very well. As soon as we can get her taking her feeds and meds all by mouth, bye-bye feeding tube. That will be great. We have had the tube since July, this is a huge milestone for us and for Kaidence. We have been asked to do a the PCMC Medical Radio Network on Tuesday. It sounds like we are interviewed for the KSL morning radio program with either Doug Wright or Grant and Amanda. The interview will be on anywhere between 9:20-10:00 am. They are trying to raise money for families that cannot afford their medical bills and all procedes go directly to these families that qualify. Then in June we will be doing the televised Children's Miracle Network. We are keeping busy and hopefully we can help others along the way. I am still trying to get ready for Kaidence's birthday. I am trying to get a picture of her that I can send to "Good Things Utah" for the birthday segment they do. I am having a hard time deciding what route I take for my talk in sacrament meeting on Sunday. WE have been asked to speak on our experiance. Hopefully things will slow down after this week.

DAY TO DAY!!!

I kept thinking that I would hurry and post a blog but things have been so busy. We are all feeling better and I have my voice back after two days without one ( no voice for a mommy is a very bad thing). Kaidence's hole in her chest finally closed off and so we gave her a bath. Now this was her first bath in our tub ever. Kaidence was always so small before that we would bath her on the kitchen counter on a cookie sheet with a towel on it. Obviously in the hospital she only had sponge bathes. This did not go over to well with Kaidence, she thought that it was pretty scary. Kaidence is wanting to take her milk by mouth. In fact, she has started to pull out her NG tube and put the part that drips the milk into her tummmy in her mouth while her feeding pump runs. She has been doing this often but the bad thing is she still needs to have her swallow tested before we can get the green light to feed her thinned liquids. We are trying to teach her how to suck still and she seems to be improving.
This next week will be busy. We have 3 appointments up at PCMC. Kaidence's Cardiology appointments have gone well.
To celebrate Valentine's Day and Kaidence's Birthday that is coming up we took heart shaped sugar cookies and a card up to the hospital with Kaidence's name on them. It was great to see everyone. We miss them very much but it is great knowing that we have made lifelong friends. Camden and McCaden had their parties at school and had a great time eating all of their candy.
Oh, and we were also sooooo excited to get a check in the mail bigger than the $30. 00 that SSI said they would send us every month. They changed the amount and it will now be the perfect amount so that we can pay for Kaidence's medication every month with it. What a huge relief and what a blessing. After I finished crying we prayed and thanked Heavenly Father for this wonderful blessing and for changing whomevers mind that made the original decision of the $30.00. We know that things will work out for our family and they have so far. We just have to remember to be prayerful and faithful. It is much to easy to get caught back up in to normal grind of life and forget all the lessons that we have learned. I don't ever want to forget what I have learned. I have missed feeling so close to the spirit. When we were making all of these life altering decisions for Kaidence and we were constantly fasting or fasted for. I was amazed at how prominent the spirit was in my life, as though we were true companions.

ON THE MEND!

I am sorry that I have not kept you updated more often, that influenza has been pretty yucky. McCaden is feeling better. I thought I was starting to feel better, but today I have felt a little worse. It seems that it is a two part illness. McCaden's was that way and mine seems to be trending that way. The second half however is more cough, voice and sinus stuff. I am trying to decide if Camden is getting it or not. We have had him and Kaidence on Tamiflu and so hopefully they can both continue to avoid it.
Kaidence is doing great. She is taking 4oz tube feeds at a time without any vommiting. I have not had to use suction for over a week. She is also getting rid of the oxygen at night. The doctors are thrilled with how great she looks. We will try to get her another swallow study because I think that she is ready for thinner liquids. I am still trying to teach her how to suck on a bottle. She is our happy little Kaidence and I can't believe that she will turn 1 year on February 23 rd. It has gone by so fast and yet so slow. I guess all I can say is "what a year!"

I wish my spell checker would start working again!!!!