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".