NO HEART CATH TOMORROW

I only have a second to post, but I have had people ask about Kaidence's heart cath tomorrow to place her stent. It will NOT be happening tomorrow. She has had a junky cough and her lungs are very wheezy. We have her on breathing treatments and steroids, so hopefully we can reschedule soon. Too bad we will now miss having 100% covered by insurance. We have hit catastrophic until December 31, but it January it will start all over again. That is ok though, either way it will go toward our out of pocket. We are just SOOOOO thankful that we do have good health insurance. That itself is a blessing. I hope that everyone had a great Christmas, I will update when I have some time.

2 Years Tomorrow!!!

Today, I cannot stop thinking about Kaidence's sweet Donor family. In fact, I think of them all of the time on a daily basis. My prayers are with them as always, but especially today. It was 2 years ago tonight that we got "the call" that Kaidence would have a second chance at life. Therefore, it was 2 years ago tonight that they said goodbye to their little boy. It will be 2 years tomorrow, December 23rd in the early morning since Kaidence was given her beautiful new heart. What an amazing gift to be given, especially at Christmas time. However, I cannot help but wonder if it made it that much harder to lose their child just days before Christmas. With this in my heart it makes this time of year a very bitter sweet time of year. I am so thankful for them and their gift to us.

Little Miss K, Tomorrow is your 2nd Heart Birthday. The last 2 1/2 years have been crazy, heartbreaking, miraculous, humbling, faith promoting and so much more. Today you are happy, thriving, into everything and feeling very independent. You have come so far and had so many wonderful people caring for you. You have been loved and cared for by so many up at the hospital, in your family, ward family and many prayers have been given in your behalf from all around the world. To all of these people, we are grateful for you. To all of our friends in the "Heart World" Thank you for sharing your stories, your love, support......we know that we are never alone and that others are walking similar paths.

Little Miss K, Thank You for your journey and for teaching us and opening our eyes to life. We love you and are glad that you are ours. May your new heart continue to grow and beat within you for many, many, many more years to come. May it be at home within you and may you continue to follow the plan that your Heavenly Father has for you. You have been blessed. Happy Heart Birthday Tomorrow!

To all of our cherished friends and family, Thank You, you are amazing. Have a WONDERFUL and VERY MERRY CHRISTMAS!!!

FYI: Kaidence will go in on December 28th to have the stent placed in her left pulmonary artery and will hopefully only have to stay the night.

A NEW HEART FOR MADISON......AND A FLOOD OF EMOTIONS!

It is amazing that every time I hear of someone getting the second chance at life, how it jut floods my heart with so many tender and sweet emotions. It is almost like it personally happens to me all over again. Our little friend Madison is getting her new heart this afternoon. I still am amazed by those that give our children this gift.

Kaidence, Camden and I were able to "personally" meet her parents and twin brother on Thursday. We know them through their blog. What a kind family and how blessed they are to get a new heart for their little girl so quickly. Please keep them in your prayers this day, as well as those that lost their little angel.

Thank you to all of you that read this who have given this gift to another. Our hearts ache for you. Please know that you have given the most amazing gift. As a mom of a little girl who is alive because of another family like you, I can tell you how words are so inadequate for what you have given. It is hard to express because the most sincere and heart felt 'Thank You' just doesn't seem like enough. It will never be enough. But know that every time my little girl gets to do something like riding a tricycle, laughing with her brothers and celebrating another birthday.... You are ALWAYS in our hearts! My heart is full of such love and gratitude for you, although we have never met.
Each night as I listen to the heart of an angel beating within my daughter I am humbled, blessed and amazed by your gift.

I NEED YOUR OPINION PLEASE-ASAP.

I need some opinions and figured that this would be a great place to turn. Our family car decided that it could no longer drive Sunday evening on the side of I-15. Needless to say we are in a rush to sell Mikes Dodge Dakota so that we can purchase another family car. We have been looking at Toyota Sienna's. My question for all of you is how well do they do in the snow. I have always driven a 4 wheel drive vehicle and so the thought of a front wheel drive scares me a little. Also, we have the WORST driveway in the winter. I have to use 4 wheel drive to get in it when it snows. It is always pure ice. I have been told that front wheel drive with snow tires should do the job, but will it really? Will it work well on those beautiful mornings when a storm hits and I have to be to PCMC early in the morning with yucky roads? I know that the Sienna's do come with AWD, but they are so hard to find and we are buying used. We have found one of both. And just wanted to know if those that own this vehicle (I think maybe 3/4 of Utah) has had good luck with the Front wheel drive. Will you respond and let me know asap, since we need a car badly.

It is between a 2006 Front wheel Drive 40,000 miles
or
A 2004 ALL Wheel Drive 65,000 miles. (is 65,000 a lot of miles for Toyota?)

OVER THE RIVER AND THROUGH THE WOODS!

Over the river and through the woods to Kaidence's house we go! We are out of here!!!! Her CRP is still not back,but her white count has dropped dramatically. We will be back on Saturday for labs. Kaidence did very well last night and today is into everything. She seems to feel so much better and is back to her spunky self.

I have got to get packed up and out of here because I have some baking to get done! I will update another post later.

We are so grateful to get to go home today. We have been given so much. Like always prayer of gratitude and peace is in our heart this day for the sweet family that gave Kaidence her second chance at life. Happy Thanksgiving to you all!

THE PLAN - AS OF TONIGHT

Kaidence looks so much better tonight. In fact, she is playing in the closet in her room. She is going pee in the potty again and has taken a little milk this afternoon. The one thing my daughter wants to eat today are Salt and Vinegar Potato chips, her favorite. Can you believe she picked that over M&M's?

Kaidence got another chest x-ray this afternoon and it looks worse than it did yesterday. They were expecting this because of how dehydrated she was yesterday. But, today now that she is more hydrated, she has more fluid in her lungs. Her prograf is still high this evening and so we are holding another dose to try to drop it even more.

The concern this evening is that her CRP (body's inflammation response) is 21. MUCH too HIGH, however we have had much higher in the past. If this number does not decrease by morning, we will not be home for Thanksgiving and she will be restarted on IV antibiotics. Today we lost 3 IV's and no longer have access for IV meds. Because of this they have started her on a very heavy oral antibiotic dose.

So all in all, our goal is to get that CRP down and get home. Missing Thanksgiving does not diminish what the holiday is all about. It is about Family, Giving Thanks and Being Grateful and I have so much to be Thankful for. So Happy Thanksgiving to you all and know that you are one of those things that I give Thanks for.

HOSPITAL UPDATE#1

Kaidence had a good night. In fact, I think it was the best night that we have both had since last Thursday. That says a lot for hospital sleep. This morning she still is not producing much urine for the amount of fluids that she has been given, however that seems to be improving slowly. Her numbers for kidney function look much better today and will hopefully continue that way. That is a BIG relief for us. Also, her white count is down from 22 to 18 this morning, so the antibiotics are doing there job and hopefully it will be back to normal soon.

Kaidence held down some feeds last night and this morning wanted some yogurt. Her oral aversions have come back, but always do when she has been sick. It is almost as though she has to learn to trust herself swallowing again. She wants to eat the food, but is too afraid to swallow it. She looks so much better today. She is sitting up and has taken over the rocking chair and food tray in the room. She insist that the food tray stays in front of her, like a sense of Independence being able to feed herself when wanted.

Our plan for today includes playing a little hospital BINGO, getting a chest x-ray and waiting for our blood culture results. Thanks for all of your prayers. If things continue well, we may make it home just in time for dinner tomorrow. I will post a little later today.

SWINE FLU STRIKES AGAIN, BUT THIS TIME WITH PNEUMONIA

Well, I am posting this from the "house upon the hill". Kaidence has been sick since Saturday with fevers, headache, cough and vomiting. I was told that we would not worry too much since she already had swine flu and should not get it again, BUT surprise She has H1N1 AGAIN and Pneumonia. The VRP panel the we had done on Sunday night came back negative for the flu, but then as I was siting in the ER today they informed me that it had been sent away and came back positive.

So kaidence's White count is 22 (not good for the immunosuppressed). Also her kidney numbers were a mess, we are hoping only because of dehydration. Her Prograf level keeps increasing even though we are trying to decrease it (it always increases when kaidence gets sick). She is almost 2 years post transplant and so they like her levels between 5 and 8. Today they were 18. This can also add to the nausea and headaches. I haven't slept since Thursday night and am feeling it a little tonight. Last night was the roughest, I think I worried and prayed for a wet diaper all night. The moment Kaidence would get 10cc's in her tummy, it was back up within a minute. I called cardiology this morning at 5 AM and left a message for the transplant coordinator to call me first thing. I wanted to bring her in for fluids and labs. I am so glad that I did.

We met with a doctor from 'Infectious Disease' that knows Kaidence all to well. He explained that when a immunosuppressed person gets H1N1 they get the initial virus for about 3 days and then it quickly clears, which Kaidence's did. They do well for a awhile and then 2-4 weeks after the initial infection they get sick again. This time usually with a bacteria infection like pneumonia as a secondary infection in addition to the H1N1 symptoms again. They aren't sure if when they get the second round of the H1N1 if the virus is alive or dead. The test only shows that it is positive for the H1N1 DNA. Reports seem to show that those who are immunosuppressed can shed the virus up to 21 days. That is a couple of weeks longer than those with a healthy immune system. We got a good laugh, because for once Kaidence actually did something that followed what they call "a text book case". She is usually writing her own book.

Anyhow, it looks as though I may get to partake of yet another lovely Thanksgiving Dinner here at the hospital. But hey, the Rainbow Cafe throws in free dessert and drink as and added bonus for Thanksgiving.

Tomorrow we will take more labs and hope that her kidney function is recovering and that she can keep things down. She is still very dehydrated this evening. They currently started Tamiflu again as well as two antibiotics for her pneumonia in her left lung.

We are heading to bed and praying that tomorrow brings much improvement.

MRI AND ARM RESULTS

Today was the day for Kaidence's MRI. We weren't too sure that we would make the appointment anyhow because Kaidence has been sick again since Saturday with fevers, coughs and vomiting. However, they wanted it done anyhow. It turns out that she has to go back in to place a stint in her LPA. I am bummed that we just didn't do it on Thursday, but it is better to know exactly what we are looking at and if it's was really needed. Dr. Gray said that it is a pretty tricky place to place a stint, because of where the kink is and its angle. It turns out that her right lung gets about 70% of the blood and the left lung is getting about 30%. This next time I am not so sure that Kaidence will be as cooperative. She knows what's going on and is a little unhappy about her bruised groin. We are hoping to do that around the 2nd week in December. I am nervous all over again.

Also, I am soooooo HAPPY to report that Kaidence's arm has regained all of its function. I am so relieved. What a blessing. Thursday night when her arm was not working at all she went to get off the couch but fell face first and got a bloody nose because her arm could not hold her. It would drag as she walked, but now looks as though nothing has happened.

Anyhow, that is our update. Thanks for checking in on our little family and Miss K.

Some GREAT news and a little not so great news!

Well, first I must give the good news first........NO REJECTION. Zero's all the way across the board. Part of me still can't believe it. Her AMR also looked better than last time. We are overwhelmed with happiness from that news.

Next part, I noticed that Kaidence was not really moving her right arm much after the cath. She also would say "owie" if I touched it. Didn't think much of it because she also had the blood pressure cuff on it. However, as the day went on she was still not moving it. I went to give her a sippy and noticed that she could not grasp her cup. She cant bend her arm. Almost like her muscles aren't working. She can twist her wrist and move her arm at the shoulder, but cannot bend her arm. It just hangs straight. We aren't sure what happened. She has no other symptoms of stroke or blood clot at the time. Dr Gray said it is very rare (should be my first sign) but sometimes patients can get what is called a brachial plexis (sp?) injury. Basically because in the cath lab they have their arms raised above their head for a long amount of time (today was longer then expected) it stretches the nerves and damages them. Most patients will recover their arm function, but it may take awhile and therapy. If she has not regained more function on Monday, Cardiology will schedule an appointment with neurology. Kaidence would not be Kaidence without some sort of drama thrown into the groove of things. Hopefully she will tolerate her arm issue ok. Right now I can tell that she gets frustrated at times. She can't climb onto things any longer, catch herself when she falls, get herself her sippy to her mouth, sit herself up from laying or do her sign language. We are praying that this will resolve itself in a timely manner before she gets into the habit of not using that arm at all. She is a happy little stinker tonight just to be home. In fact she talked and sang to herself the whole way home.

We are trying to focus on the amazing news from her biopsy. We have been so blessed and the Lord will continue to bless Kaidence and find a way to provide for her what is needed. Monday we will have results as to whether a stint needs to be placed and we will maybe have a better idea of what her arm will do. Thank you for all of your prayers. I will update if anything changes.

ALL FINISHED!

Kaidence is finished. Everything looked great except for the LPA. It is not narrowing , but kinked instead. It is most likely because of how her heart is sitting in her chest. We will be back on Monday for a CT or MRI and that will tell us how much blood is getting through to her left lung. It is obvious that the LPA is much smaller than the RPA. In fact, it is about half the size. However, everything still looks as though it was caught early enough to fix.

I have not spoken with transplant team yet, but Dr. Gray said that besides the kink in the LPA that her heart looked PERFECT! Not a day goes by that I am not amazed by the journey that we have had and that somebody gave us this amazing chance at life. It is amazing to see pictures of this heart that beats within my daughter. When they transplanted Kaidence, they hooked up her new heart and it started beating on its own without needing to be shocked or anything. I truly believe that is at home within Kaidence for this time.

We will keep you posted on the biopsy results and all the other many numbers that they look for. Thank You for your prayers. We are so grateful for such an amazing support group.

Cath Update #2

We still have not heard anymore. This 2-3 hour cath has just hit the 4 hour mark. I am starting to freak out a little. I keep thinking that maybe my pager is broken, even though I know it is not. I always thought as well when she was waiting for her heart. I am trying to keep myself busy, but my mind has a different agenda. I cant stop wondering what is going on and if everything has gone ok with the ballooning of the artery. I keep thinking that I should hear from them any moment. Just thought that I would update.

Update to cath #1

Kaidence's cardiologist just came by to let us know that Kaidence is dong well. They think that there is narrowing of the Left Pulmonary Artery (LPA). However, we have had this discussion before. In fact 6 months after tx, we sent Kaidence to the cath with the idea that a stint would be placed at that time. Dr. Cowley felt that it was just the angle of her artery and that blood flow was fine and therefore found no need to place the stint. Dr. Gray was wanting to place a stint after getting a look at things this morning. They will balloon her artery in the cath and see what happens. If things look stable at the point Kaidence's cardiologist wants to wait and do a MRI of her lungs and heart that will show the blood flow to both. If this looks bad, then we will go into another cath to have the stint placed. It would be one more cath, but better than having something placed that is not needed.

(FYI - a stint opens up the artery and allows more blood flow. If the artery goes without the appropriate amount of flow then the vessels of that artery will die off and cause serious problems).

She still is not finished and we are anxious to see her. Still keeping a prayer in our hearts.

WE MADE IT TO THE CATH LAB!!!!

We officially made it into the cath lab around 7:30. She woke up with a little cough this morning, but they feel that she sounds and looks pretty good. Kaidence was a little unsure of things, but she insisted on walking herself into the Cath lab and went and stood right next to the table. Everybody seemed surprised at how big she had gotten. She chose bubble gum for her flavor of sleepy juice, but was a little unsure as to why she didn't get a 'real' piece of gum. They let me stay in the room with her as they put her to sleep. I was able to help hold her and just talk with her as she drifted off to sleep. She only cried for a minute before she was snoring away.

They told us to expect 3 hours because they were doing a full cath on her. I don't ever recall her having a full cath since her initial 6 month post transplant. They will use both legs as access to a artery and a vein. They will take the biopsies and then inject dye into the coronary arteries to look for disease and narrowing. I am a little worried as to how the coronaries will look due to the fact that last cath she came back showing AMR antibodies. They seem to think that being positive for the AMR antibodies leads to a higher chance of disease of the arteries. Time will tell and I am trying to not worry over things I cannot control. Please keep my little lady in your prayers today. I will update again as soon as I get any info.

Cath Lab - take 3!

So about 4:30 this afternoon the cath lab called to cancel Kaidence's appointment for the 1st of December. They had another heart kiddo that needed the spot. I told them I understood because I am sure that we have caused others to reschedule in the past when Kaidence needed things done.

Well after trying to find another date to reschedule, she said that they could do her cath tomorrow morning. I asked her to double and triple check with same day surgery to be sure that they were really ok with it. She called and they told her that 4 weeks post H1N1 was only for those that had the illness severely enough to be hospitalized. So we are apparently good to go for the morning, first case.

Please keep Kaidence and the doctors in your prayers. I have been a little more paranoid about her airway holding up after the tonsil episode, but I think that was an isolated episode due to the swelling, cough and too much Lortab.

I am also worried about her heart valves after the other cath. Once you have one bad cath experience it seems to make you a little more paranoid for the others. I am sure that all will be well. She knows that she gets to go to the hospital in the morning. she just tilted her head and said "Oh no" in her soft, raspy voice. We look forward to checking this off our Holiday list of 'things to do'.

Thank You for your prayers. They bring so much comfort, peace and guidance.

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.
*******************************************************
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!

ER- UPDATE!

Miss K was admitted to the 3rd floor tonight. They will keep an eye on things. She seems to be improving, although she still has fevers. They have a couple of theories as to what may have happened. They think that she may have had a seizure (I really don't think that this was the case) because of low O2 saturation's. The low sats could be caused most likely because of a combination of all of the following: Swelling from surgery, paralyzed vocal chord, cough, Spasms of the airway and some sort of viral infection that they have seen going around lately. We cannot check a respiratory panel because that would require suctioning which would be much too dangerous right now with the risk of bleeding. They think that because of her compromised immune system theses things all working against her may have set off this episode. It all happened so quickly. It was not like the choking episode back in March, it was completely different.

We will stay tonight and hopefully go home in the morning. We won't be coming around to visit any of our heart buddies while we are here because we would like to keep all of you healthy just in case she really does have something. So we hope that everyone is doing well and we will update tomorrow. Thanks for your thoughts and prayers.

IN THE ER!!!

Well, Miss K is still feeling pretty yucky. Her cough has been rough on her and because of her vocal chord cannot clear the mucous. I have talked to cardiology, ENT and her pediatrician because I have been worried about coughs and fevers.

Early this afternoon she she started crying and was laying on the floor next to me when all of a sudden she turned blue, her eyes rolled back and started to close and then she went limp. The Needless to say I called 911. While I was waiting for them to arrive, I put some O2 on her and the color came back to her face. She just laid on the couch, but could hardly keep her eyes open. The paramedics also noted the her left eye was a little more droopy than her right. I told them that at about 2:30 this morning that eye was watering and red. They said although it is no longer red, just droopy that it may be due to an infection or something more. She is also satting lower, but that seems to come and go depending on the congestion.

So needless to say, we are in the ER back at our house upon the hill. We aren't sure what they will do with her. I just don't want that to happen again. Everyone seems to think that the paralyzed vocal chord had a lot to due with what happened this afternoon. We will keep you all posted.

HOME!

We came home this afternoon. K had a rough night last night and would not let me stray from her more than an inch (seriously). She still won't let me too far from her and she is still sick to her tummy. We used her g-tube to pull out a lot of clotted blood from her tummy and it has seemed to help a little. She spiked a fever in the middle of the night. They let us still take her home but are concerned about the fever because of her immunosuppression. We are to call if the fevers come back. WELL, the fevers are back. We have called cardiology and are waiting to see what happens with them. She is refusing to drink anything (so glad we have a G-tube). I am thinking that tonight may be a little rough, but that is fine with us. I am tired but so glad that we can do all this in our own house. After all, this is such a normal kid thing to have done and a walk in the park compared to all the other stuff. So for now, we will go on loving being 'normal'.

POST SURGERY!

So the surgery was fast and went well. Kaidence is not feeling too great and was not happy afterwards. She is pretty sick to her tummy and keeps pointing to her mouth while crying. She is obsessed as always with her her oxygen bag. She refuses to let anyone take it from her. It was her favorite toy in the hospital while waiting for her heart. She has had many visitors of doctors, techs and nurses. It is like a great big family reunion.

The doctor said that K's adenoids were 80% obstructive and that they were much bigger than her tonsils. We are really hoping that this will be the key to getting her off her o2 at night.
Thanks for your thoughts and prayers.

OFF TO SURGERY!!!

Kaidence just went in for her surgery. It feels so different sitting in the waiting room this time around and knowing that we dont have to think about things like 'heart/lung bypass'. Not as much stress. I am still worried, because that is just what I do. The doctor said that she will be going to the PICU after, just as a precaution. He also said that he was afraid that he would get beaten up by the nurses if he didn't send her to the PICU. One of her PICU nurses came by to see her just as we were walking her to the OR. Kaidence was excited. I was worried that handing Miss K over to surgery wouldn't go so well. You see, Versed just doesn't cut it any longer for Kaidence and she was totally aware of everything going on around her. We walked to the doors and handed Kaidence over. She turned around and waved to us as he carried her through the doors. No tears....nothing. Mike and I looked at each other and said "I guess we weren't needed after all." In all honesty I am glad that she was happy to go with him. It made it so much easier.

My heart is overwhelmed every time I step into this hospital. We have so much to be grateful for. Sitting in the waiting room brings on so many emotions that are so close to the surface. My heart if full and I thank Heavenly Father everyday for the miracles that he has blessed us with and the sweet family that gave Kaidence her gift of a heart.

A 'BIG GIRL' MONTH FOR MISS K

I have started another post telling you about all the fun things that we did this summer, BUT it will still be awhile before I get it done. In the meantime I will give a quick Kaidence healthy update. Kaidence has done AWESOME this month. She has honestly grown so much this month. At the end of July we took her ff Singulair and baby aspirin and all of a sudden I have an EATER. Yes, you read that right. Kaidence seems to have found that food is pretty darn good after all. We honestly went from not taking a sippy cup of milk for the last 2.5 months toooooo "mama eat, eat mama". It honestly happened overnight. Also, the same day that the eating started Kaidence decided to potty train herself. She just woke up one morning and refused to wear a diaper (as I thought to myself, yeah right). But, Kaidence always has a surprise for us and I am pretty confident in saying that she is potty trained. She has only had 4 accidents since the first of August.

Also, Kaidence now sleeps in a 'big girl' bed. Ok, it is just her crib with the side off on her new bedding that has been sitting in the closet. BUT, she thinks that she is as big as her brothers now. I am a little concerned that all this 'big girl' behavior will be no more after her surgery next week. But, oh well!!!!

Currently Miss K has had some fevers. Her chest xray looks fine but cardiology just called to let us know that she most likely has a bacterial infection brewing. CRP and white count (bands and neuts) are elevated. We have the lovely cultures looking to grow something, so we will just wait.

By the way, Kaidence was not pleased with her multiple IV attempts today from our IV team buddies. She tried hiding her arms today once she IV team. Now that she cries"no mommy" "Hurts" "All done" and "Go Home" as she is being poked, my heart breaks more and more. Luckily, kids are very forgiving (we should all learn form them) and once she got her shirt on and felt safe, we were all friends again.

We are hoping that Miss K gets better so that we can proceed with the surgery!!!!

THE LONG AWAITED GENETICS APPOINTMENT!

Well today was one of those long awaited days. The day that you think you will get all the answers even though you know deep down inside that they will never have an answer. After 7 months of having our genetics appointment and 1 1/2 years post transplant we met with those that ran all of the test over the past 2 years. I can't believe that this month it will be 2 years since Kaidence got sick. Many of you know that we never received answers as to what really caused Kaidence's heart Failure. It is between a virus that we all caught or a glycogen storage disease. Now the glycogen storage disease was never in the picture until Kaidence received the "Berlin Heart." It was at that time that they took a piece of her heart and biopsied it and found glycogen. It was then that they took her off the transplant list (almost for good). After further biopsy of her leg muscle it was found that yes, there was glycogen. To explain about the glycogen storage disease, they range in types and severity. They can cause cardiomyopathy or serious muscle degeneration, however Kaidence tested negative for all of these forms. They sent off her heart after it was ex-planted but nothing stood out from what they already knew (it was huge and completely stretched out and just plain sick).

So we met with genetics today to try and figure out what happened and what are the chances of it happening again to any other children. Well, we don't have anymore information then we did back at the beginning. All genetic testing (glycogen related and other genetic testing) has been negative (which we are so very grateful for). However, they tell us that Kaidence may still have glycogen in her body and that if she does it is a glycogen disease that has not yet been discovered. The doctor told me that he spent the weekend going over Kaidence's chart and then he asked me if I had ANY idea how BIG her chart was? He said it took him the weekend to read through it. Then one of the interns said that the part she read was over 300 pages!!! He then proceeded to tell me that after reading K's chart he was very surprised that she looked as great as she does. He just kept saying that over and over, He said that he is VERY pleased and that things look very promising because she is developing so well and normally with the glycogen disease, she should be getting worse.

He said that IF she does have a glycogen storage disease that we had a 25% chance that it could pass on to other children. He seemed to think the 25% was the worst cases scenario but after seeing her today he is leaning more towards the virus attacking her heart but nothing can be ruled out for sure! However, at this point everything is pointing back to the virus. Mike, myself and the doctors have always felt that this is what caused her heart failure in the first place. So we will continue on with assuming it was a virus unless Kaidence takes a turn for the worse, but we aren't planning on that happening!!!

They will continue watching for more research to find a non-invasive way to test Kaidence to get answers as to what happened but that those answers will likely be years in the future. He will go over her chart again this week and then discuss her in the genetics meeting with all the other doctors. If anything comes up as a concern or to test for they will give us a call. Other than that as long as Kaidence is still growing and doing well we don't have to go back. Becaue they are so hard to get into, they did make an appointment for an optional follow up for February 2011 (who's is going to remind me of that one?)

I am very happy to let you know that the fact that K is in the 47th percentile was a HUGE plus for them today. That's right, as of the last week of May, K was barely in the 5th percentile. She weighed about 28.2 lbs (Thanks to her g-tube)but that was with her pants on. Her shirt was off because she threw up in the car on the way. I am usually good at catching the vomit while I am driving but I could not get over fast enough and had to empty the markers out of the crayon box because somebody took the puke bowl out of my car. What were they thinking!?! Needless to say she was half naked for our appointment, but she doesn't care. She is proud her her scars.

We have been so blessed and feel so humbled as to how well Kaidence has done. Everyday I am in awe at the fact that she is still here. I can't believe the miracle that Kaidence has beating in her chest and that because of her donor heart she IS living a very happy and normal life. She acts like any other toddler. I often wondered what life after transplant would be like. I have been afraid of her future for almost her whole life. I think I will always have a fear deep down in my heart but I am embracing the present. It is a beautiful time in Kaidence's life. A time for her to laugh, learn, love and grow. A time for us to truly know her. We have been blessed with this precious gift and we thank our Father in Heaven for this time we have been given to embrace Kaidence and her two big brothers! We love them with all of our hearts!!!

YES, WE ARE STILL HERE!

(yet again here is another post that never was posted because I had pics to go with it. Well, I am posting anyhow without pics because now the post is a little out of date but better than nothing.....right?)

So, It has been awhile since I have given a full update. Infact, I most likely won't remember everything because it has bee so long. After Kaidence had Pneumonia at the end of April, I got it as well but was too exhausted to get myself to the doctor (sound familiar mommy's?) So needless to say after 3 weeks of just feeling terrible, I broke down one weekend and went to the instacare to get some meds. I had pneumonia as well. They gave me an antibiotic, cough syrup and inhaler and I started feeling much better after a couple of days. However, I have had for about the last month or two that feeling again that someone is siting on my chest and it triggers that dry cough. I have had to refill my inhaler and use the kiddos nebulizer at least once daily. Do I have asthma or did I just damage my lungs because I waited too long to see a doctor?

We have been busy with swimming lessons. The kids love going but I have a hard time keeping Kaidence out of the pool. She brings me her swimming suit in the morning and would wear it all day if I let her. The boys are great little swimmers.

McCaden is looking forward to his 8th Birthday next month and can't wait to be baptised and become a member of the church. We are excited for him as well. It has been great having him home from school for the summer. He is a great helper to me and keeps Camden busy so that I can get something done. McCaden, just finished baseball and loved it. He did a great job, improved his skills but most importantly he had a great time. I can't believe how big he is getting!!!

Camden has been happy to have McCaden home. He also is a good helper but for some reason loves to try and mother Kaidence all of the time. He has informed me that he wants to be a motorcycle rider when he grows up and asked me if he could park his 'rainbow' colored motorcycle in our garage when he gets it. He says some of the craziest things sometimes.

Kaidence is growing up very fast. She is gaining weight finally ( I tube feed her every 3 hours to get the weight gain). Last months she weighed 23.8 lbs today she weighs 26.5 lbs. With the weight gain has come this fierce sense of energy and independence from our little girl. I am starting to think that it was easier when she was barely in the 5th percentile for growth. This Spring has been harder (sickness wise) for Kaidence than it was all winter. A couple of weeks ago she had strep throat and today she is once again sick. I talked with her lung doctor and we are planning on having tonsils and adenoids removed this summer along with having tubes placed in Kaidence's ears.

I have been at the pediatrician's office all morning with Camden and Kaidence. Camden has had body aches, sore throat, headache, cough and stomach ache off and on and had an ear ache all night. Kaidence has started the runny nose, cough, sneezing and is not eating. She is gagging and throwing up much more often........... So to all of our IHH Heart friends. We will spare you all by not coming to the Picnic tonight, but are so sad that we will miss out on all of the friends and fun. We are so sad and frustrated, I was really looking forward to seeing everyone!

Hopefully, we can get better and see you all at the heart camp!

Please keep this little girl in your prayers today.

http://lindsaysheart.blogspot.com/

"Childrens Miracle Network" telethon for Primary Childrens Hospital and a quick Kaidence update.

Yes, it is that time of year again. It is time for the annual "Children's Miracle Network". We have been excited to be a part of this for the last couple of years and hope that its success may bless the lives of others.

Kaidence's shorter video of her "Miracle Story" will supposedly be viewed as one of the opening stories for the telethon as part of the national broadcast and also throughout the telethon. So look for her. I have also been told that John Schneider and other celebrities talk about Kaidence’s story! It should be fun and intersting to see.

But most importantly, this is a great time to contribute to the only children's hospital in our area. Primary Children's Medical Center truly is a gem in the community. We are so blessed to have such an amazing place to care for our sick children. This hospital is in our community caring for our children, grandchildren, niece's , nephews, neighbors as well as some adult patients that received specialized care from the hospital as children.From the half of year that we spent living in the hospital and the time that we spend there now for appointments, we have seen how our wonderful community plays such an important role in the success of the hospital as well as bringing smiles to the children's faces. I hope that you will take the time to give a little contribution if possible. Mike and I don't have much to give but we will give what we can and if others do the same it will go a long way and bless the lives of others. For those that want to donate in honor of a child that has been touched in some way by this amazing childrens hospital, you can do that as well.

I copied this info from Paul's blog (hope it is ok Paul). But he had all the info already.

Miracles happen every day at Primary Children's Medical Center and once a year the Utah community and KSL Channel 5 come together to celebrate those miracles during the KSL/Primary Children's Miracle Network Telethon.

The 27th annual Primary Children's Telethon begins Saturday, May 30 at 6:30 p.m. and continues through Sunday, May 31 at 5:00 p.m. on KSL Channel 5.

Primary Children's is the only full-service pediatric hospital in the Intermountain West equipped to care for the total child. The hospital provides specialized care to each child, regardless of ability to pay.

Last year, Primary Children's expended more than $13.4 million to cover more than 11,337 charity-care patient visits.Contributions can be made during the Telethon or by mail to Primary Children's Medical Center, P.O. Box 58249, Salt Lake City, UT, 84158, or online at www.primarychildrens.org.

KAIDENCE UPDATE: Well, Kaidence is once again sporting more fevers. What is it about this time of year? She has been up for the last couple of nights with low grade fevers. She acts ok during the day (no vomiting or anything). She will go outside and run around but these fevers seem to flare up at night. Last night she set an all time record for the highest fever that she has ever had 105 degrees. She had jumped from 102.7 to 104.4 in about 5 minutes and then within a couple more minutes hit 105. I was trying to get ready to take her in to the ER when the cool wash clothes and Tylenol started kicking in. I was so relieved and honestly surprised that this was actually working because it usually does not. I just kept praying that she would not start to go into seizures before I could get her temp down, she was just so shaky. We have blood test (cultures) pending and other than that we have no clue what is going on (chest x-rays look good). Also we keep losing weight. OK, not WE (i have the opposite problem) but I think you all knew what I meant. Kaidence is back down around 23 lbs 8 oz from the 25 lbs 2 oz. She is still getting the same amount of calories but for some reason is losing the weight instead of gaining it.

Anyhow, that is it for us. Please remember the telethon this weekend and thanks for all of your love, prayers and concern.

KAIDENCE HAS DONE GREAT!

I have been meaning to update but my Internet on my laptop was not working and I just barely got Mike to look at it. Anyhow, Kaidence has been doing very well. In fact I think that she has handled this pneumonia just GREAT! I have been shocked, but trust my when I say that Cardiology has seemed even more shocked. I managed to keep Kaidence home the night with the 103.8 temp. I had her sleep in her diaper only with a blanket over her and then I put her on continuous G-tube feeds. I used some really cold cans of pediasure and then packed her feeding pump bags with ice packs so that it stayed cold all night. I really think that have the cold liquids running did the trick with keeping her fevers under 101 degrees. It seemed to work better then doing sponge baths (she hates those). Mike and I also took turns waking up every 1.5 hours to check her temp, just in case. Anyhow, that night was Kaidence's first dose of antibiotics and she has not had a fever since. In fact, starting the next morning she has wanted to be outside riding her bike. Cardiology called the next morning worried and I let them know that she was fever free and wanting to play. They seemed to feel much better about keeping her out of the hospital and off IV antibiotics at that point, but I am not sure they believed me 100%. They called the next day as well to check again (I think that they were all expecting her to be very sick). I had to give them the same news again, but they asked that I take her in that day to see her pediatrician and check her 02 sats. With her little mask on that she wears to the doctors office she was satting at 98 (AWESOME for a healthy person). We will go in tomorrow for follow up labs to see if her CRP has come down and to do another chest x-ray. I think that things will look much better. Kaidence has had more of a cough today than she has in days, but I think that is maybe because her lungs are finally cleaning themselves out and she can move all of that junk up and out. I am so grateful that this turned out how it did. We were surprised and quit frankly I initially thought that we were going to end up back in the PICU. Fortunately we have been able to stay home and life goes on.

ANOTHER FIRST FOR KAIDENCE...PNEUMONIA!

So I have been meaning to post for awhile but obviously that has never happened. Everything here has been going pretty well up until the last couple of days. We have been busy removing the HUGE pine trees on the side of our house. I am sure that many of you that drive by our house have noticed that they are missing. We figured that we had better do it before mother nature did it for us. This way we got to pick were the trees landed. We found a wonderful tree guy to help us get the job done. He was so kind and helpful. I would recommend him strongly to any of you needing tree removal. Call me and I will get you the info. He did a wonderful Job.

Today I went and spoke at an Organ Donation class up at McKayDee Hospital for 'Donate Life month'. I was able to share Kaidence's story and many of the feelings that we have towards our donor family. I am always hoping that somehow we can make a difference in the lives of those needing transplants. After the class today a women came up to me and told me that she had just made all the arrangements needed to donate her body to science after she passes away. She said that after today, she is now going home to undo these arrangements and become and Organ Donor instead. She said that she never realized the desperate need for Organ Donation.

Now to little Miss K. She is a tricky little thing you know. She spiked a fever Sunday morning of 102.8 and threw up. I gave her some Tylenol an she was fine the rest of the day. She then spent The remainder of Sunday, Monday and Tuesday Morning as happy and healthy as could be. Then suddenly (seriously within 10-15 minutes) she went lethargic and spiked another temp of about 103 degrees. So I bagged her myself so that I could send in a urine sample assuming that we had another UTI. She saw the doctor and we decided to wait and see what the sample showed. The fever continued today so after speaking in Ogden her Pediatrician decided to have a chest x-ray and blood labs (Blood cultures included, of course). Did I tell you that I have the most amazing pediatrician who spent her day off arranging everything for me today? Anyhow, Kaidence's chest x-ray showed that she has bacterial Pneumonia......BUMMER! I also called and gave the blood test results to cardiology and they were not happy at all about her white count and HIGH CRP (body's inflammatory response to infection). They said the numbers are much too high for her. After seeing the numbers they will most likely be admitting her to the hospital. They wanted to do it tonight but I am hoping that we can hold her out until tomorrow so that we don't have to go through the ER. Tonight 45 minutes after getting Tylenol (Kaidence can't have Ibuprofen) her temp reached 103.8 degrees within about 5 minute time frame. We have given many sponge baths tonight and it seems that it is lowering and she is now sleeping comfortably. Cardiology is meeting tomorrow morning to see if they will be admitting her tomorrow. They said that they are worried because Kaidence is good at pretending to be doing OK and then she suddenly crashes very quickly. Yep, they know Kaidence well by now. If her fever gets above 102 again tonight we will have to bring her in.

Other than that Kaidence has been doing GREAT! She is so much fun and getting very independent (or so she thinks). Oh and she also does stairs now and has a new found love of candy.

McCaden is playing machine pitch baseball and seems to really like it. He was hit into home base the other night and so excited. Mcaden is a sweetheart. The other day he took his very own money to school to put toward his lunch money account. He came home and asked me to look at his account and see if I noticed anything different. He had paid $5.00. He said "I just wanted to help out you and dad a little". What a good boy!

Camden still continues to be my sweet cuddle bug (most of the time). Today as I was getting ready to go and give my talk he took the dress that I had layed out to wear and he hid it so that I couldn't find it. He said that he doesn't like that dress. Oh well, can't please everyone I suppose.

Stay tuned, I am sure there will be more to come!

ANOTHER CONFERENCE WEEKEND AT AN IHC FACILITY......doing conference "Stephenson Style!"

The past 3 -4 years we have started a conference tradition. It all started with my grandma (who Kaidence is named after). Years ago we noticed that whenever conference rolled around we were watching it from the surgery waiting room at LDS hospital. We did that twice with my grandma. We have also done that With Kaidence. She was admitted back into the PICU at PCMC for her long stay in between Saturday morning sessions of conference in October 2007. We have also spent a couple of conferences up there as well since being transplanted.

Spring Conference = LDS Hospital
Fall Conference = Primary Children's.

Last night was no different. Maybe the Lord thinks that we listen better when we are in a medical facility, I don't know. We spent yesterday at LDS hospital as Mike became ill and had his appendix removed. We were blessed that it did not rupture with how bad it was and how long he had been ill. We saw the Lord bless us once again not only with his appendix but on the way to the hospital we were in an intersection turning left up onto Victory Road (at the arrow) when someone raced around all the stopped cars and ran a red light on Beck Street going insanely fast. I am not sure if they were running from someone. I will just say that it should have involved three cars and with how fast the guy was going I am not sure that anyone in our car or the others would have survived. We would have been broadsided between a car and an SUV. It was a very close call, the closest I have ever had. And for Mike with an appendix ready to burst being in a accident like that would have been disastrous. They wouldn't even let him walk around to go to the bathroom because they were afraid it was going to burst before it could be removed. I am so grateful for the prayers that were offered before we left for the hospital and for the neighbors that left Priesthood last night to come and give Mike a Priesthood blessing before going to the hospital. Thank You!

So I guess this means the I will likely have 2 tickets to give away for tomorrows concert for Paul. What a bummer, I was looking forward to it but that is not the purpose for the concert and so I am happy that we were still able to contribute to Paul's Heart Fund. The concert is sold out. I have 7 other family members going tomorrow but like I said I don't think that we will be able to make it so please let me know if you want 2 tickets. Let me know how the concert is and have fun.

PLEAE SUPPORT OUR FRIEND WHO IS WAITING FOR A NEW HEART!!! A BENEFIT CONCERT FOR PAUL!

(OK so I wrote the first part of this blog a LONG time ago and never finished to post, sorry)

We know Paul through his blog and were able to also meet him and his wife in Cardiology. He and his wife are both such kind and genuine people. He is waiting for a new heart and has been waiting for a LONG TIME. Paul and Kaidence share the same doctors (Transplant team) at PCMC. Paul's friends are doing a benefit concert for him and his family. The concert "Living For Eden" (Eden is his cute little girl) will be April 6th 2009. It is a great cause and I must say that the show you would be getting will be pretty darn good as well. As I know by now, a Heart Transplant is not cheap. Neither is the wait for a heart or the time after the heart comes. Medical bills become a constant part of your budget, prescription cost, procedures and everything else. Let's all come together to help Paul get ready for his New Heart! If you are interested in getting tickets or donating to this great cause,

please follow this link http://www.livingforeden.com/

I just bought all my families tickets......PLEASE COME and help out a GREAT family! Can't wait to see ya'll there!

Also, April is "DONATE LIFE" month. We will be speaking at a ceremony at the end of April and attending another ceremony next week. We feel honored to have been asked to be part of this. Everyday I think of our Donor Family and they in a way have become part of our family, although we have only talked through a couple of letters. I am sure that they have no idea how much we think of them, but a day has never gone by in our home that they have not been in our prayers. Everytime my little kiddos get balloons they send one up to Heaven for Grandma and one to the little boy who gave his heart to Kaidence. We will forever be grateful. Thank You to all those that make Organ Donation possible.

Call 911!

This evening I had another one of those experiences that leaves you with a big pit in your stomach. The boys and I needed to go to the store to get some supplies for a school project for M (yes, I was feeling ambitious today). We did our shopping with Kaidence in the stroller like always. Now Kaidence has been sick with a runny nose, cough and last Saturday night her ear drum burst. So this whole week, before I can feed her or give her medications I have to get her up and pound on her back for a while to move along the mucous. If I don't she ends up gagging and throwing up. She has never been able to tolerate thick secretions since her long stay in the PICU of being intubated. I heard Kaidence doing the cough she does just before vomiting so I turned and took her out of her stroller to pound on her back knowing that it will keep her from puking. As I picked her up, Kaidence completely stopped breathing and her whole face was turning blue VERY fast. I did the Heimlich but then felt that I just needed to lay her over my knee and do back blows ( I remembered the video I watched in high school when I became a First Responder). I was doing this as I ran down the aisle yelling for help. A lady next to me could see how Kaidence was blue, gray and her eyes had the scariest look in them and she started yelling through Dicks Market to call 911. By this time I was surrounded by people shouting to see if anyone was a doctor and I was trying to yell over eveyrone and tell the guy on the phone with 911 to tell them that she has had a heart transplant and that she was 2 years old. This whole time C is shinning a flashlight in my eyes asking me if we can buy it and them a minute later he brings me some candy and asks me again if I will but it for him. Needless to say he was ignored!!!

Someone finally took the boys from me, Kaidence was looking so much worse and still not breathing. I kept praying to myself but was thinking,

Why isn't she breathing??

'she is going to die, she is dying.'

'Where is the ambulance??????'

I kept doing the back blows while thinking 'we have come this far and this is how it is ending?'

At last Kaidence started to cry and so I knew that I had finally cleared whatever was blocking her airway. We told the 911 operator that Kaidence was breathing again and they stayed on the line for a minute and I told them that I thought that she would be ok. But Kaidence's color was not coming back quickly and about 3-5 minutes after she started breathing again she still looked very blue, so the store manager called 911 again. After being on the phone with the operator for a few minutes the second time, Kaidence pinked up and wanted a balloon to play with. I told the operator that she was looking much better and that I was driving her right over to her pediatrician's office just down the street (they have a night clinic and they are connected to the hospital as well if that was needed) . We got the boys in the car and said a prayer of thanks and drove to the doctors. Kaidence was looking so much better by now but her O2 was still a little low but after some time came back up to her normal. The doctor seems to think that it is all related to Kaidence's cold. We are taking her in on Friday to have chest x-rays done to see if she aspirated anything into her lungs that would cause pneumonia.

A couple of years ago my M choked on a lego. I went to do the Heimlich but I froze and drug him into the garage where Mike was instead. After Mike did a couple of thrust the Lego came up, but when M choked he never turned colors. Since that experience I have always thought about what I would do if it ever happened again, because I was so angry with myself knowing that I froze and that by the time you call 911, a lot of damage can already be done from going without O2 for too long. It only takes a couple of minutes.

I am so grateful that Heavenly Father helped me, to help Kaidence tonight. I am grateful that my mind was clear. It was one of those times that I knew every second counted and that I didn't have time to waist. I have seen a lot of crazy stuff in the PICU but have never seen a child that color of deep blue gray and you could only watch it getting worse with every second (literally). After things settled down at the store the lady that saw me first with Kaidence told me that she couldn't see her face because I had her over my knee facing the ground but she could see how blue she was through her head of hair. That nasty grey blue color was a 100 times worse then when Kaidence was in heart failure. Tonight I go to bed counting my blessings and thinking that maybe I'll keep Kaidence's G-Tube forever....It's safer that way.

So what was the big project that warranted taking all the kiddos to the store???? Here it is.

SAYING GOODBYE

What do you say when you know that a family is getting ready to say goodbyes to their little girl?
I remember asking Mike while in the hospital with Kaidence "Do you think that Kaidence will be ok?" Now I know that many of you have heard this before, but I was really hoping to hear a definite 'yes' from my husband. What he said to me at first made me angry for about a minute and then in that moment my whole way of thinking was changed forever. He said to me "No matter what happens, SHE will be ok. It is whether or not we will be." Like I said, I thought about what he said, day after day, after day. It was true, no matter what happened, Kaidence would be happy, loved and cared for. She would be more than ok. I also understood that it would possibly be better for her as well, because the suffering would be no more.

I have been following Gracie's blog since before her birth. Today as they say goodbye, they will be giving other children HOPE as they have chosen to donate some of Gracie's Organs, what an amazing thing to do. My heart breaks for the Gledhill family. I pray that today Gracie may be held and loved by her family until it is her time to return to the arms of her Loving Father in Heaven. I pray that the Lord will continue to hold this family up and give them the faith and strength to make it through this loss. May Gracie's brothers and sister feel the love that Heavenly Father has for ALL of his children. May they all be blessed this day with "the Faith of a Child," pure, perfect and simple. My thoughts and prayers are with this family today as they say goodbye for a brief moment in time. May they feel the love of Gracie and our Heavenly Father this day! Gracie YOUR family is FOREVER!

NEW VIDEO LINK!

This afternoon I got the link to the 7 minute version of Kaidence's Miracle story for the Children's Miracle Network. Here is the link to the longer version. The video starts out the same as the shorter version that has been on the right side of my blog but this one has more of her story in the middle of it. More picture, more video more about organ donation. It is my favorite version.
Here is the link. If you want to watch it in HD there is a button on the video bar that you can scroll down and change to HD.
http://cmnstudio.blogspot.com/2009/02/kaidence-stephenson-miracle-story-7-min.html

All seems to be going ok here.We have coughs and runny noses, but who doesn't this time of year? We have been having a hard time keeping Kaidence hydrated. Kaidence has been throwing up any night feeds that she gets and has taken on the attitude of 'who needs food?' This has been going on for a few weeks but somehow have managed to keep her out of 'you know where' and for that we are always grateful.


Today my heart has broken for the Gledhill Family. May the Lord continue to bless them with the things that only HE knows they need. We will be fasting tomorrow for the Gledhill family and for Gracie Gourley, please feel free to join with us. Life is fragile, let us always remember this and hold those we love a little closer.

HAPPY 2ND BIRTHDAY!

Happy Birthday little Kaidence! WE love you so much and are everyday grateful that you have blessed our lives. We are better because of you and the lessons that you have taught us. You have come so far. You are walking, talking, signing, climbing, laughing and you hardly ever cry. You are so happy, so content, so amazing! I am thankful that you finally have the chance to be a healthy little girl. I am so grateful for the trials that we have seen. These trials make us who we are today, not only as individuals but as an eternal family. We have seen miracle after miracle. The Lord's hand is in all things. You have paved the way for so many others both medically and spiritually. Your life gives HOPE to those that need it. Heavenly Father has BIG plans for you Kaidence. I love you baby girl and give thanks everyday that I hear that little heart beating away in your chest. HAPPY 2ND BIRTHDAY!

Love,
Mommy

(more post below pictures)

Yesterday Kaidence had a party at her Nanny and Bompa's with many of her cousins. She loved opening the presents and insisted on getting off every piece of paper and tape before she would even pay any attention to the gift. Tonight we celebrated with dinner and treats (none of which Kaidence ate) at home with her Nanna and Pappa, great grandpa and Auntie. My sister , husband and her kiddos are all sick and had to miss the fun Princess Party! Kaidence loved us singing "Happy Birthday" to her. Her most favorite gift is a microphone that plays music and can record herself singing. Unfortunately her brothers like it just as much as she does. Thank You Paula and Angie, they dropped by a bunch of cute HEART balloons ( I love HEARTS these days) and gave me a little visit as well ( I love visits too).
Please continue to pray for all of our Heart Friends. So many of them need you extra prayers tonight!

SERIOUS COMPLICATIONS FOR GRACIE!

Gracie received a new heart today but is having some very serious complications. Gracie and her family need your prayers now more than ever. Tonight my heart is breaking for this family. I know the Lord has a plan for Gracie as he does for each one of us. It has been a very long 24 hours for their family and they have a long ways to go, please remember them in your prayers.
This is a picture of Gracie last night after they found out that she was getting a new heart.

PLEASE JUST EAT!!!!!!

I hope that everyone had a very Happy Valentine's Day. We had a lot of fun. The boys of course had a great time at their school parties. It was nice to go and help out for a change. However, I had to put a ban on candy Saturday night because the boys were flying off the walls. It was pretty bad so we had to do a little sugar detox.
Here are some cute Valentines Hair that I did for my niece and Kaidence. Gotta love hearts!!!

Kaidence's eating is not so great at the moment. I am once again tube feeding more and more. I gravity feed most everything but have used the pump at night like always. Kaidence is NOT tolerating night feeds at all. I have cleaned up A LOT of puke in the middle of the night this last week. So if we don't get all of Kaidence's feeds in before midnight, it won't be happening at all.

Kaidence's cardiology appointment was bumped up a week because next weeks schedule is insanely busy. Anyhow, all looks well. Kaidence's cardiologist was surprised with how great Kaidence looked. I also let her know that Early Intervention said that Kaidence is all caught up developmentally (except eating.) She said that it was absolutely amazing that she is all caught up considering how long she spent in the hospital waiting for a heart with her being so sick. She was very pleased with Kaidence's progress. Kaidence herself loved being at the hospital, of course. She followed all of the nurses around and just thought that it was the greatest. Also, Kaidence weighs a little over 25 pounds....WOW. We have been stuck in the 23lbs range forever. I was so surprised. I think the Duocal (extra calories) that I give her helps her weight to not drop so easily. It just seems more consistent now. I am taking in Kaidence to have a procedure done tomorrow to check her kidneys. I hope that all looks well.

Here is a picture taken today of Kaidence. "M" decided that Kaidence need to wear his soccer uniform (shin guards included). He dressed her himself. She is holding "C's" dog named "hamburger."

Kaidence's Birthday is coming up next Monday and she will be 2 YEARS OLD......CAN YOU BELIEVE THAT??????

For her Birthday this year we are asking that in honor of Kaidence and all of her heart buddies that you Please become an ORGAN DONOR if you are not already. Kaidence would not be here to celebrate her 2nd Birthday if it weren't for her Organ Donor. That little boy saved my daughters life.

What better Birthday wish could Kaidence have for all of her heart buddies than for them to have the same opportunity?

We have been blessed!

PRAYERS FOR GRACIE!

Many of you who have followed Kaidence's journey through this blog have also followed another heart buddy named Gracie. Gracie's family has been given some very bad news for her and they have some very tough decisions to make in regards to her health and future. This is a wonderful family and I have no doubt that they will do what is best for their little Gracie.

The tough thing when you are in this situation is that sometimes you have many options and often times you have very little, but regardless a decision has to be made. As parents we have been given that responsibility from our Heavenly Father to see to all the cares and needs of our child. But how do you know what is best? What is right? What is part of your child's earthly plan? We struggled over this with Kaidence. The answer is found through prayer, fasting and the Holy Spirit.

All parents want what is best for their children, but sometimes the knowing and understanding what plan that Heavenly Father has for that child is the tough part. I pray that the Lord will bless this family with the peace and comfort that they need as the spirit guides Gracie's parents and her doctors, I invite you all to join me. I know from experience that your faith, fasting and prayers carried me on days that I could not walk on my own.

Click here to read about Gracie http://thegledhillfamily.blogspot.com/

A POST........SHOCKED ARE YOU?

Are you all shocked that I am posting? So I must say that I am very behind on my posting, but it does seems to be the trend (hint, hint to everyone else). Here is a very brief summary of everything. I am so far behind that this just seems too overwhelming. So no pictures for now and here it goes....... Kaidence was discharged from the hospital on December 23rd. I hope that she doesn't make this a traditional way to celebrate her "Angel Heart anniversary" but we will wait and see what she decides to do next year.

Christmas was so much fun this year. The kids set out cookies and English toffee ( a whole plate full) along with some carrots. The problem was that they placed them down by the fireplace. So after they settled to bed, I looked over and was shocked to see that Santa must have already come because that plate (minus the carrots) was completely empty. Well, our little dog had taken care of the Santa treats for us. Needless to say that she spent the night in the laundry room, just in case she got sick. We celebrated Christmas with our family and had a very relaxing Christmas day. The kids were all so excited to see what Santa had brought for them this year. What a blessing it was to have all of my family together at home for Christmas. Then, a couple of days after Christmas I got the wonderful stomach flu, most likely courtesy of Kaidence.

For New Years we went and stayed at a hotel by our house with my parents and ordered pizza and let the boys swim( Kaidence still can't swim in public pools) as long as they wanted. My dad spent most of his time making bugs with the boys (they got a"creepy crawler" maker for Christmas......huge hit). I figured that I brought in last New Year's in the hospital so this year we decided to bring it in relaxing.

"C" has had strep throat but has been on antibiotics for a couple of days and I think that I may have it so I am going to get tested tonight. I started "M" on antibiotics, just in case. Mike has been working his fanny off between work and school. Hopefully he will be done this year, but has recently informed me that he wants to go on to get his Masters.

Kaidence is doing very well. She has started walking everywhere and is much more confident. She can move pretty quickly. She is looking more and more like a little girl and not my baby. She is talking and signing more and more everyday. We have some follow up appointments coming up with genetics and the sleep doctor and hopefully we can be done with genetics FOREVER!!! We have an appointment next Monday to check her kidneys for some things. She has been getting a lot of UTI's. I am very excited to announce that we are going to cardiology every 6 weeks. Can you believe that??? 6 whole weeks without having to go to the hospital (I hope). We do still have to get her Prograf levels drawn because they have been all over the place lately but I have started having them drawn at a lab by my house and it saves a lot of time.

Saturday, January 10th marked one year to the day that Kaidence came home from the hospital after 3 months straight in the PICU and getting her heart transplant. It has gone by both slowly and quickly if that is possible. We spent that day at the movies with Hope Kids and then at the doctors with "C" for his strep test. My mom went with me to the movies because Mike had work and homework to do.

Feb. 5th 2009 -
Early intervention came to the house today for Kaidence's yearly evaluation. I am so excited to let you all know that she is caught up in all areas of development, except eating of course. However, we have seen progress in that area as well. I took her to an eating specialist that is supposed to be great at getting kids eating and off the g-tube (feeding tube). I call her the "G-tube Whisperer". She suggested that I start giving Kaidence pureed food through her g-tube. She said that there is no official study on this but that they have seen for whatever reason it helps to stimulate the kids desire to eat by mouth. I have to say that after doing it for a few days it does seems to be helping. Two days ago she took 4 oz of baby food in a sitting. I know that some are reading this thinking that I am crazy for being so proud ,but all you heart mommy's that know what I am talking about will agree. Kaidence still struggles a great deal with being able to swallow her food. Therefore her Pediasure is still her source of nutrition. We have days that she takes a sippy cup ok but we still have to tube feed at night and then we will go a week with having to tube feed everything. Oh well, baby steps I suppose. We are still further than we were a year ago.

Since Mike has been working so much lately he surprised the family this last weekend and took us all up to the Homestead to get away and spend time together. We had such a great time with the kids. The boys had a great time swimming and playing games with their mommy and daddy. I also must mention that Kaidence was able to swim with us as well. It was the first time that she has been swimming since our family vacation in 2007 when she got sick at 5 months old.

Other than that all is well at home. The boys are doing well in school and keep me busy with life. I love it though and find that I often keep telling myself "Come what may and love it".