CATH LAB = NO GO!

Ok, they once again canceled her cath. I want to just sit and cry (OK, I already have). They are too afraid to do her because she had H1N1. I understand the concern, but people you also have to go by the patients clinical status, not just a diagnosis of something that she had in the past. Kaidence has NO COUGH, NO RUNNY NOSE, NO FEVER...........NOTHING!!! SHE IS EVEN EATING! She has been well for a week now. I can't guarantee that she will be this healthy as the winter goes on. The ironic thing is that this would be the healthiest that Kaidence has EVER been for a heart cath. Cardiology even pleaded our case but the anesthesiologist said no way because she had the swine flu. I understand they are only trying to protect our children and I do appreciate that. It is just one of those black and white things without seeing any of the color in between. Next time we will request Chuck P as our anesthesiologist. So our date is being moved to December. I am really praying for no rejection so that we are not in the hospital again for Christmas or on strict house arrest Christmas Day.

Worse things have happened in life and my no means is this a huge deal. Just a big disappointment and a longer wait for the unknown. I am grateful that Kaidence IS so healthy. I just wish others would listen and know that I would NEVER even chance for a moment putting Kaidence in any danger.

Thanks for letting me vent!

GOODBYE H1N1.......IT WAS FUN GETTING TO KNOW YA!

The Swine Flu will hopefully not be seen at our home ever again. Kaidence is the only one that got the darn bug (knocking on wood of course). Monday was when it started, and quickly at that. Tuesday was another day full of vomiting, high fevers 103-104.7, shakes, coughing.....all the good stuff. Tuesday night was.....LOOOOOOONG to say the least. That was a rough night for her and seems to be when everything really peeked. Wednesday the vomiting decreased greatly and so did the fevers. When she got them they were still high, but she only had two that day (compared to non-stop the days before) and they were manageable with Tylenol for once. All of these days she just layed and cried, while pointing to her little forehead. It hurt. We returned to the Pediatrician's office Wednesday to check her lungs for pneumonia and they were very pleased with how well she had done. Everything sounded great. Wednesday afternoon was her last fever and she has not had one since. It took a couple of days past that to get over the headache and work her feeds back up to full, but we are getting there. Just as quickly as the illness came on, it left. But it sure did a good job of wiping her out. However, Kaidence is dancing all over the house today & asking for candy. This little thing is always dancing through the house. I am amazed that she did so well. I almost cried when the doctor told me she had H1N1. I think that getting the Tamiflu in her system so quickly after the fevers started played a huge part in that, even though it made her stomach sicker. Thank You for all you prayers, we know that plays the biggest role of all.

Hopefully we can all stay well and my cute little stinker boys will keep healthy. We still need the second doses of the H1N1 vaccine for all the kids, maybe next week if her cath goes well. Her cath has been rescheduled sooner than we thought possible, because of how quickly she got over her illness. It is for this Thursday morning. Wish us luck and please keep Kaidence in your prayers next Thursday!

H1N1...........IT FOUND US!!!

Yes, my fear has become a reality.............
Miss K has been diagnosed with HINI, yes the Swine Flu. How the heck she got this I have NO IDEA. We have someone that watches her every Sunday so that we can go to pat of church with the boys. We haven't been anywhere that she has not been in her stroller with her mask on and my poor boys change their shirts the moment they walk in the door from school and sanitize their hands. Oh well, I guess even with being so careful and all the Avagard that I carry with me you can't always protect them from everything. She has only had her first dose of the vaccine for the H1N1, the second dose is due this Saturday. Her symptoms came on very quickly (within an hour). I took her into her doctors office and they swabbed her and said that the test hadn't finished running but that it was already showing positive. She has a fever, head hurts, throat hurts (all determined by her pointing and crying). She has a cough and has been pretty nauseated. We put her on Tamiflu last night but that makes her tummy worse. She lays around a lot and does not have much energy at all. She looks pretty pale and has those bloodshot fever eyes. I feel bad that she feels so bad. I am having a hard time timing all her heart meds around the spells of nausea. If we can at least keep them in for 30 minutes then we are good to go. I have hard a hard time keeping her fever and body aches in check with only Tylenol, because she cant have the Ibuprofen. On a positive, note I have a little cuddle bug and I love it!

Needless to say that Kaidence's Yearly Heart Biopsy that was scheduled for this Friday has been canceled for a few weeks. Big sigh, you know how you build yourself up for it. I just wanted to get it over with before the Holiday's incase they did find rejection like last year. That is why we do it every November even though she was transplanted in December. If they do find rejection then we have to do a steroid taper and she once again becomes very immunosuppressed and cant be around anyone. I am hoping that when the Cath does happen, that all will be well so that we can spend the Holiday's with our family.

Maybe this is just how things are supposed to work out. I am just so happy that she has done so well and we have come so far. We have been blessed, I see it more and more everyday and I am so grateful for all that Heavenly Father has given us. I cannot help but feel so blessed and happy.
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SIDENOTE:
I am almost finished loading all of our summer pictures and will get a very looooong post in sometime soon. Also, I know that I have not yet posted about her Make A Wish party but I ended up passing 3 kidney stones that night and was in bed the whole week after sick. I will post about it soon, however pictures of my beautiful kidney stones will not be included, I know you are all sad about that one. And yes, it was worse than child birth without the epidural ( mine didn't work at all with K). And we will just leave it at that!

Thanks for checking in on us, we will keep you posted!

UPDATE --MAKE A WISH AND ORGAN DONATION 9K RACE!

UPDATED INFO ON "MAKE A WISH" PARTY AND RACE
Kaidence's party will be at 3:45 with the "Make a Wish" Ribbon Cutting Ceremony at 4:00 on this Saturday, October 17th. Hope you can all come! (see below for details)

Also, here is some info on the race/walk that will be held on the 24th. The walk portion (this is what we are doing) will be .9K (1/2 mile only). I can handle that much better and hopefully more of you will be able to join. For those of you that are running it.......YOU GO!!!!!


-------------------------------------------------------------------------------"MAKE A WISH" PARTY
Saturday October 17th
Hello to all! Has life been crazy or what? We think that we may finally have a day for Kaidence's "Make A Wish" party and would love all of our friends to come. We are planning for it to take place this Saturday October 17th. I am thinking around 4:30, but will defiantly have more of a definite idea after I talk more with the foundation. The weather should be good and we will be holding in our backyard, since that is where her wish is! If you would like to come, please send me an email tellebelle@gmail.com and tell me who you are so that I can send you our home address. Also, if you already know where I live, please send me an email and let me know that you will be coming so I can give MAW a count. Kaidence would love you all to be there. You have all been such a big part of her life. BTW, it will be a PRINCESS party so bring your little princess' and princes to meet some of the Disney Princess that will be there.

RUN WITH KAIDENCE FOR ORGAN DONATION

October 24th

Also, More info will also come on this but I wanted to give you all a heads up. If you have followed Kaidence you most likely will have a place in your heart also for this next subject. October 24th is a the 'Nations Day of Service.' The Quest For The Gift Of Life Foundation is gearing up to try to set a world record. On that day they are trying to get over 9,000 new Organ Donor Registries. Can you think of any better way to give that day?

In correlation with that, Salt Lake will be having its first ever ORGAN DONATION 9k race/walk. Please come and help Kaidence 'Pay It Forward'. We have been blessed and know that we can make a difference in the lives of others when we all work together. We are actually running (walking) in honor of all the children that are waiting, will wait and have waited for someone to give them 'The gift of life'. In our hearts that day will be the children that ran out of time while waiting for a second chance at life. This is why we are doing this. So on that day please come out and RUN WITH KAIDENCE AND INTERMOUNTAIN HEALING HEARTS and give HOPE to other CHILDREN and their FAMILIES!

The 9k will be October 24th at 9am at Liberty Park. Kaidence has invited children young and old to come and run/walk with her on this day. We would love you all to grab your strollers, tricycles, walkers whatever and come and join us. This walk is to raise awareness of the need for Organ Donation. A $5 portion of each registration fee will be given to Intermountain Healing Hearts to give to Primary Children's Medical Centers Transplant Program for families. Mark your calendars and we hope to see you there. Follow the link http://donatelifeutah.com/run.html to register and find out more info on the race or click the picture on the upper right hand side of the blog. Please snag this button on put it on your blogs to help spread the word! Kaidence with Mallory Wahlstrom, current Miss Kaysville, living Donor

Eden's Daddy has a NEW HEART!!!!

This post is for all of my friends and family that ask about Paul...........He got a NEW HEART!!!!!!!

PRAYS FOR THE STRICKLAND FAMILY!

Please pray for our dear friends and their sweet little Mason. We first met Summer and Mark when Mason was Life Flighted to PCMC. He was only a couple of days old. I remember thinking how tiny he was. We have spent much time together in the PICU and have kept in touch since. Please send your prayers their way. They need the guidance and comfort that can only come from our Heavenly Father. I know without a shadow of doubt, that we were carried by angels on some of our darkest days because of the prayers and fasting offered in our families behalf. They were the days that while I prayed and pleaded, I knew the Lord was kneeling right beside me with His arms wrapped around me. May they also be blessed with the same comfort and peace.
This is the link to their blog http://miraclemason.blogspot.com/

HOME AGAIN!!!!

Yes, we are once again home. I am so sorry that I did not post sooner, but I have been so tired from little Miss K thinking that she need not sleep. Anyhow, we cam home Saturday afternoon. Kaidence looked much better and is able to handle her secretions much better. We think that the combo of the pain medication (because it can suppress the respiratory system), her thick secretions and cough all caused her to her airway to have a spasm that immediately closed off. She did not seem to lose consciousness and I really doubt that she ever had a seizure. Her saturations took the day to recover and get back to where they were normally, but they did. Her fevers stopped that night in the hospital.

Kaidence is soooooo grumpy. This is NOT like her at all. It almost seems like I brought home a totally different child. She does not want anyone to look at her, she wants to be held (but not be held). She is not sleeping during the night. I find her on the floor, sleeping with wooden blocks under her back and head. She just is not herself. I have loved spending time with Kaidence. I have just never seen her so miserable. She is starting to drink and I did get a smile tonight!!!! We are almost a week out, one more to go!