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Sunday, July 23, 2006 2:23 PM CDT

Hello everyone!
We just got back from Miami for Katie's annual check-up and all is great!

We have had a wonderful 18 months since her transplant with no rejections!

Here is a summary of the major events:
- In November of 2005 we went to Miami to close half of Katie's ileostomy.
- In December Katie suffered through a bout of Rotovirus (Katie went into hypervolemic shock, got severly dehydrated, lost 6 pounds, and ended up with a blood infection from the PICC line).
- In March Katie's ileostomy prolapsed so she had surgery to close it.
- We home schooled her January thru April until she got her strength back. She finally went back to school in April and finished the year with flying colors!
- And one more important thing... On Mother's Day 2006, Katie found out that the Moore Family wanted to adopt her! She was thrilled. We have completed the paperwork and are waiting on a court date. Hopefully by Christmas her new name will be 'Katie Lynn Chester Moore' :o)

We are going to wait a while before we consider closing her colostomy, but otherwise she is doing wonderful. She has lots of energy, loves playing with her friends and has spent most of the summer in the pool :o)

Thank you for your prayers! Please don't stop! Katie will continue to need the healing hand of God to protect her transplant and stay healthy. When I asked the transplant doctors what I needed to do for Katie or what I needed to watch out for, they answered,"We don't know (not many children have survived a second multi-visceral transplant), just give her a good life for as long as you have her."

Please send us an email if you have questions or would like more information!

We love you all bunches!!!
Laura & Katie

Wednesday, February 15, 2006 9:20 PM CST

Hello everyone!

No news is good news right now :o)
Katie and I returned to Miami at the end of November last year to begin closing her ostomies. This time they closed half of her ileosomty (for her small bowel). We will return sometime late spring or early summer to close the other half. Katie will most likely have the colostomy (large colon) for a few more years before they consider closing it.

Katie did get a GI virus right before Christmas and spent a week in the hospital in Atlanta. She recovered well though and is back in school now.

Thanks to all of your thoughts and prayers, Katie continues to grow, learn, and get stronger every day. She is full of love and life. We are deeply grateful for all of you. You are such a part of Katie. I can't wait until she's old enough to understand and truly appreciate the significance of what you mean to her!

God bless you one and all!

Laura

Wednesday, November 30, 2005 11:52 AM CST

I know, I know!
You can't believe it has taken me so long to update this website! I do apologize.

You must understand though... Katie is doing so very well that it takes every minute of every day to keep up with her!
See the new photo at the top of this page? Katie and another one of our other foster daughters are on a campout, in a tent, complete with bonfire and smores, in our backyard!

Katie is truly doing wonderful. She loves first grade and is doing extremely well. She is eating, growing and progressing so well that in fact, we are back in Miami this week for Katie to have surgery to begin closing her ostomies!!! Hurray!!!

She has had no rejection or complications and we expect the same in the future. After this surgery (she's in the OR as I write!) we will have one more surgery in the early spring to completely close the ileostomy (for the small bowel) and then she'll be done for a couple of years. At some point in the future they may decide to close the colostomy (for the large colon) but the docs are in no hurry. They believe that the longer they wait, the better it will be for Katie. And believe me we are all for that!!!

Thank you all so very, very much for your continued thoughts and prayers. You are such a blessing and a big part of why Katie has done so well!

God bless you all!!!

Love,
Katie and Laura

Sunday, July 31, 2005 8:55 AM EST

Dear Family, Friends and Prayer Warriors,

Katie is doing very well, so well in fact that it is difficult to keep up with her. She is growing, eating us out of house and home, playing, laughing, running, sleeping, healing, and loving life. She has not vomited in 4 months! She has gained 10 pounds and grown 2 inches. We now have two other medically fragile foster children and Katie is busy helping me care for them. After all, she is the expert now :o)

Please forgive me for taking so long to update this journal. It is with great awe and a deeply grateful heart that I write this letter to you today. I have waited several weeks to give myself time to sort through the events, feelings, and emotions that have overwhelmed the last five months. As I think back, to a day more than 20 weeks ago, it is hard to find the words to explain the changes, growth and miracles that have taken place in my life, the lives of my family, and the blessed life of one very special Katie. I will attempt to find the words, however, to some how honor the blessings that you have so graciously bestowed upon us. Although it will be hard to express the depth or our appreciation, Katie and I do want to share the prayers of thanksgiving that we have for all of you.

From early on I have dedicated myself to love and care for children and their families. Throughout my personal and professional careers I have witnessed many drastic and unbelievable situations and circumstances through the lives of others. I have seen horrific accidents, devastating illnesses, debilitating injuries, watched families struggle through tortuous recoveries and try to cope with the pain of a loss that numbs their hearts and souls. I have cried. I have lamented. And I have suffered with them.

I have also seen many miracles. I have cared for a very young child with a tumor cell in every square inch of his brain who was sent home, with no further treatment, to die, only to return to the clinic six months later cured. This child, now 19, graduated from high school last year. I have also seen families so devastated and torn apart by the loss of a child somehow pull together and use their experiences to give others strength. I have been in the presence of a four year old child facing her own imminent death but more concerned with how her parents would cope when she was gone. I have been there in a ‘bedside seat’ for these moments. And yet as close as I have been, I know I was still distant. As emotional as it was, I still could not truly feel or understand the pain, the loss, or the love and joy these families experienced.

Now, having spent the last sixteen months with Katie- the last five being so intense- I am one step closer. Although Katie is not my biological child, and I will not pretend that it is the same, I have reached a new and different level of understanding. For those of you who have kept in touch and have read the website journals, you know some of what we have experienced. There was much more, however, that I did not share with you. There was so much that I just couldn’t put in to words. It was scary, frightening, lonely, and threatened the very core of my being. And yet, I felt God’s presence. There was a comfort amidst the chaos. We felt your prayers. We saw them being answered.

Katie and I pray that through our experience you might be touched, gain new understanding and know that God is with you. Believe…

In my journals I compared our journey to a roller coaster ride. My image is of Katie in the front seat with her arms held high and her eyes on heaven. She was ready for this ride. Not once did she ask to get off. And although she was offered the opportunity (one I know that she considered, for she misses her Grandfather deeply and she has told me that “some day I will go to my God”) she chose to stay with us a while longer. I believe with all my heart and soul that God is not finished with her yet. She has already been a witness to many, but there is more for her to do. The ride in not over yet. Although the tracks have taken us through many ups and downs, there is more to experience. We have gone from the heights of euphoria to the depths of disappointment, from thoughts of our earthy future to imagining the passage through the gates of heaven. There were times that made perfect sense- only to be followed by unexplainable, incomprehensible moments that would shake our foundation. Though we felt torn, exhausted, and insecure, we were given strength, a deeper understanding and the perseverance to make it through.

Some of you are standing in line for a ride like this…

Katie and I pray that through the witnessing of our journey you will trust, have faith, and experience a smoother ride.

Others of you are standing on the side lines watching…

Katie and I pray that through your commitment to observe, you will learn, grow and support others- especially ‘the least of these’.

We could not complete this humble expression of gratitude if we did not recognize and honor the guidance and support that has carried each and every one of us along this journey. For this roller coaster ride does not randomly meander. It is fixed upon a path. A rock solid path that guides every turn, each high and low, from beginning to end. The bumps are learning experiences. Every jolt an awakening. Each time we soar upward, we are given the chance to face heaven with our arms extended and open wide- to believe, fell and trust our Heavenly Father and His will for us.

Katie and I have one more prayer for you…
That no matter where your path takes you, no matter the ups and downs, the fears or disappointments, we pray that you will follow His path.

And remember Katie…
Know that prayer works. Recognize God’s hand at work in the miracles that happen all around you. Honor and celebrate the great joy and many blessings He has so graciously showered upon all of us. Respect the power of the great Healer.

And live. Live each day as a witness and an instrument- not for your own gain- but for the benefit of others in need. We are proof that you can change a life.

Thank you for being there with us on this journey. Thank you for your love, faith, and willingness to share Katie’s story so that others might believe and have hope.

By His grace, through His love, and wrapped in His healing arms...

We wish you many blessings in return,

Katie and Laura

Friday, May 6, 2005 11:30 PM EST

Hello Everybody!

Guess what! I finally have time to update the web page :o)

And we have absolutely wonderful news!!!
Katie and I went back to Miami this week- just for 24 hours- for a few tests, scope, biopsy, labs and clinic visit. It went great! The scope looked beautiful. The biopsy was clear with no signs of rejection! And... the docs were so impressed with how well we've done that we don't have to go back for THREE WHOLE MONTHS!!!! YAAAAAAAHHHHHHHOOOOOOO!!!!

There are no words to describe the feelings. There are no tears big enough to share the emotions. There is no smile wide enough to hold the joy. We are so incredibly honored, blessed, and grateful.... Praise the Lord and Thank You God for everything!

Katie has gained 4 more pounds, is eating us out of house and home, and goes non-stop 14 hours a day (thankfully she is sleeping 10 wonderful, restful, peaceful hours every night). She's eating so well that we have the G-Tube feedings down to only 16 hours a day! That means she has 8 waking hours of freedom with no tubes, pumps or poles attached!

Oh how I wish you could see her. She is so very happy. She runs, plays, rides her bike, plants flowers, builds forts, plays dress-up, wins every game she plays :o) and goes to bed saying, "I'm so very glad to be home."

Her color is good. Her (chipmunk)cheeks are rosy once again. Her eyes are twinkling and her laughter will stop a room full of people and warm your heart.

This is life. This is life worth living. She is a miracle, an angel, and a blessing to us all.

I do have one request for all of you. If Katie's story has touched your heart or your life in any way, would you please write it down in a paragraph or two and send it to us? I would really like to include your stories in her scrapbook. Who knows how long her life will be,and whatever happens, I want her to know that although she has sacrificed and suffered, there are those who have been blessed through her. You can email anything to us at 'dreamhousefamily@bellsouth.com'

I will be writing one more epistle and posting it on the website- probably sometime in the next week. I'll have new pictures for you then too. So stay tuned :o)

I know I have said this several times...
But please know how very much we love all of you and how very grateful we are for all of your thoughts, prayers, love, and giving spirits. You are partly responsible for our happiness! We couldn't have gotten through this without you.

May God return your kindness ten-fold....

Our love to you all...

Laura & Katie

Thursday, April 21, 2005 4:46 AM CDT

PLEASE FORGIVE ME!!!
I do apologize for taking so long to update you on Katie's progress. It has been a whirlwind!

As you can imagine, the transition from hospital to the Transplant House was huge. It took me a while to get a handle on mixing all of her medications and getting a schedule down for all of her care. Thank goodness I didn't have much else to compete for my time and attention, because that was about all I could handle!

When we went home last weekend, there was another big transition. Handling all of Katie's care on top of the normal daily routine at home with a large house, two active teenagers (one of them getting his Eagle Scout Rank, turning 18 and graduating from High School in May and the other turning 'Sweet' sixteen and getting her drivers license) and a husband who travels, required some concentration! I am sorry that I wasn't able to update the website sooner.

We had an absolutely, positively heavenly weekend! The weather was perfect. The pollen had calmed a little. We got to see so many family and friends. It was wonderful getting to go to Katie's school on Friday and seeing all of the staff, teachers and her friends. Every where we went they had signs welcoming Katie home. Even the marquee out front said, "Welcome Back Katie". Thank you all so very much for all that you do to make Katie feel so loved and special!!!

On Saturday, we invited Katie's relatives to come for a visit. Her Grandmother, sisters, Aunts and cousins came for lunch and playtime. Even Katie's case manager from Childkind stopped by. She loved seeing them. In the evening we had a cookout by the pool with the "Cheese" Family. They have truly been angels to my family while I've been gone. They have looked after Hayden and Anna and the house, helped with shopping, looked in on the kids when they were sick, taken care of carpooling, and been there whenever they needed help. God bless you Marshall, Patty, Amanda and Taylor! You all are such the greatest!!!

On Sunday we went to church. It was very special. The administration had sent out an email to the congregation and asked everyone to wear pink and purple in Katie's honor (those are her favorite colors!). There were pink ribbons tied to the columns out front and big signs on the doors that said "Welcome Back Katie!" Katie's presence was acknowledged during the service and a prayer of thanksgiving was offered in her honor. She and I made the rounds to several Sunday School classes to say hello and thank you for all of the love, prayers, cards, gifts and emails that so many of them have sent to us over the last three months. She was so very happy to see her class and teachers.

After church we hurried home to eat a quick bite and get ready for the afternoon celebrations. There were probably 40 neighbors, family members and friends that came over to help us set up and decorate. Barb Hess organized food for the reception (thank you to everyone in my Sunday School class that pitched in for the food! It was wonderful!). Lynn Kimbro, Director of Christian Education at my church, brought a huge cake decorated with the Boy Scout emblem. Jimi Taylor, owner of Taylor Made Baskets and Gifts, decorated with balloons and ribbions. Patty Cheek decorated with streamers. Cindy Reynolds and several Boy Scouts from Hayden's troop brought table top decorations, banners, table cloths, napkins, and chairs. My Mom, Dad, Sister and Brother-in-Law came early and helped with the decorating and set up too! Whew! It was a production :o) And the Eagle Scout Ceremony was perfect. Everyone who participated did so well. It was very touching. Thank you to all of our family and friends who stood to say such nice things about Hayden! We sincerely appreciate all of your cards and gifts too. You all made the afternoon so very special. He will remember it forever!!!

After the ceremony, Spiced Rite BBQ came and set up a delicious buffet of BBQ pork, chicken, BBQ beans, cole slaw, brunswick stew, bread, peach cobbler, tea and lemonade. Yum, yum! We ate outside and enjoyed the gorgeous evening. Later Hayden opened birthday gifts and our family and friends shared a wonderful time together. Thank you Huckaby's for making the trip to be with us for this special occassion!

What an awesome day! There is nothing better than to be surrounded by your closest family and friends and celebrate the many blessings that God has so generously shared with us (we missed you Nancy!). And of course in all of this partying, Katie was celebrated too! Everyone was so glad to see her. She radiated energy, excitement and joy the entire weekend. She was so happy to play with her next door neighbor, Vanessa (we love you bunches!) and be surrounded by love from all of those who care about her so very much.

I really thought that she would be exhausted on Monday. Before the transplant, if we had a busy day one day, she would crash the next day. But, Praise God, she woke up cheerful on Monday morning and played hard again all day! It was such a wonder. I went to the DH office for much of the day to catch up on work and Lizzy played with Katie. When I came home in the afternoon, I drove down the street in front of our house toward the driveway, and what to my wondering eyes did I see? My beautiful little girl riding her bike down the sidewalk!!!! Oh my gosh!!!! Do you have any idea what that did to me? She was happy, healthy, wearing a smile that glowed from two blocks away and waving her arms to everyone who drove by. What a miracle. What a blessing. Thank you dear Heavenly Father!

It is amazing how wonderful the weekend was. It is awesome how well Katie handled it. And you know what? When we headed back to Miami on Tuesday, I really thought Katie would show signs of 'wear' from the busy weekend. But you know what? She looked better than ever. Her eyes were sparkling. Her cheeks were pink. Her color was healthy (no dark circles under her eyes!). She was laughing, joking, playing, and excited. I just can't put into words how this feels. It's almost so wonderful that it scares me. This is the longest she's ever gone (in the year that she's been with me) that she has been stable, healthy and not had any major problems. If you didn't notice the bumps under her shirt from all of her ostomies and tubes, you would think she was perfectly normal- just like any other 7 year old little girl. And she even has a bellybutton!!!!

So now it's Thursday morning, we're in Miami and we are waking up to go for another scope, biopsy and clinic visit. We'll finish around 1pm and then guess what!!!! WE ARE GOING HOME!!!!!!

Yep, you read it right. That's what I said!
WE ARE GOING HOME!

LIKE FOR REAL. LIKE TO STAY. LIKE, WE'RE ONLY COMING BACK TO MIAMI TO VISIT FOR APPOINTMENTS.

YAHOOOOOOOOOOOOOOO!
HALLELUJAH AND PRAISE GOD FROM WHOM ALL BLESSING FLOW!!!!!!

May will be a transition month. It will take a while to get everything transferred back to the doctors in Atlanta. We will be returning to Miami every other week for scopes, biopsies and clinic visits. I imagine that sometime in June we will be down to once a month visits and then maybe by the fall every other month. Of course it all depends on how Katie does. If she has trouble (rejection) we will be back in Miami until it resolves.

I do want to say a special thank you to all of the home healthcare staff and nurses! Healthfield and PSA- you are angels. We couldn't do this without your help! You all take such good care of us.

And to all of you who have been with us through this journey... thank you from the bottom of our hearts! You have truly made a difference. I know I have said this before, but I really want you to understand how important you have been to me. I can't tell you how many times I have been down and felt better when I re-read your website notes, cards and letters. You got me through. And all of your love, prayers, cards and gifts for Katie have given her hope and the strength to keep working and trying to get better. Please know how deeply and sincerely grateful we are for all you have done. We will keep you in our daily prayers and ask that God return your kindness and love ten-fold.

I will update the website weekly so you can check back every now and then to see how we are doing. Of course, you can always send us an email: dreamhousefamily@bellsouth.net
anytime you would like! And if you're ever in Lilburn, give me a call and stop by to see us (678-571-5378).

May God bless you and keep you all in the palm of His hand.

With deepest love and appreciation,
Laura & Katie

Tuesday, April 12, 2005 2:04 PM CDT

Please forgive me for not updating the journal yesterday.
Boy, I tell you what! It is awesome that Katie is doing so well, but I can't keep up with her!!! She is a bundle of energy and wants to be doing something every second of every day! :o) We are having a great time. Yesterday, we took a walk along the 'moat' (one of the many canals in Florida that handle the water) next to our building and guess what!?!!! We saw a HUGE manatee!!!! It was so incredible! Katie was thrilled. The big guy surfaced twice and stuck his nose up at us. It was great. Of course I was too excited and trying to run after Katie so I didn't get to take a picture. Sorry! It did make for an exciting afternoon.

The labs and scope are good. We'll get the biopsy results on Thrusday, but on visual her intestinal lining looked good. She continue to tolerate the decrease in TPN and increase in G Tube feeds. We're now at 50cc/hr on TPN and 50cc/hr on feeds! AND, she's eating like a horse! She actually eats as much or more than I do at each meal!!! I'm hoping to be able to have her off of TPN in the next two weeks :o) Hurray!

All systems are go for our trip home this weekend. We have our two pilots (one to get us to Atlanta on Friday and one to get us back to Miami on Monday). Thank you Bruce and Richard!!! We love you both bunches!!!

Katie had school this morning and her teacher says she is testing at '1.5' (which means First grade level, five months into the school year) in reading and writing. She still has to grade the math section. Katie has really improved. Katie worked hard yesterday and completed (on her own!) all of the work the teacher had planned to do with Katie today. Linda was quite surprised when she found out this morning! Go Katie Go!!!

We have a clinic visit on Thursday, so I'll update you again on Thursday afternoon to let you know what the docs say.

I uploaded a some new photos. Check them out!

Love and blessings to you all!

Laura & Katie

Sunday, April 10, 2005 2:30 PM CDT

'Tis another blessed Sunday afternoon.
I've played my worship music (which always makes me cry) and sang to the songs while the cleaning lady changed the sheets and vaccuumed the carpet :o) Katie has done a wonderful job today working on her school homework (reading and writing). She worked on learning the words 'smart', 'some', 'homework', 'should', and 'will'. She really is a good reader. She sounds out unfamiliar words and gets so excited when she gets them right :o) Her writing has improved tremendously. The anti-rejection med (prograf) that she is getting makes her a little shakey so its frustrating for her sometimes to make fine details or small letters. She tries none the less! I also spent time today printing off every single journal entry and message you all have posted on the website and put them in a notebook for Katie. I wonder what she will remember. I wonder what she'll think when she looks back over all of the wonderful things you all have said. I do hope someday she understands how very lucky she is to have so many angels looking out for her :o)

We had an awesome day yesterday! Katie and I packed up her pumps and rode the Metro train down to Target to go shopping. Thank you to everyone who sent her money for her birthday and over the last two months. She had $42 and bought three toys that she has been asking for (MagnetiX set, a Sky Dancer doll, and some Poke'mon cards). She was thrilled. We also went shopping for clothes. She has gained so much weight on the steroids that she has outgrown everything I brought for her to wear :o)

After a nap, we went up to the Penthouse Playground (5th floor of the parking deck) to play. I have uploaded new photos so you can see what we like to do up there! I never knew a parking deck could be so much fun. I actually look forward to our evenings up there. The sun is setting and the breeze is blowing. We love to watch the planes take off and land. Sometimes we even see a blimp float by. Lately there have been storm clouds in the distance and the cool, fresh breeze is so refreshing. We found a tennis ball one day too, so now we have fun kicking and throwing that around. I mentioned before that we like to watch the pigeons that roost in the 'rafters' and drink from the water puddles. We also hunt for loose change and other items that fall out of cars (imagine that! Its like a scavanger hunt!) The 'Sky Dancer' doll that Katie bought at Target is one that stands on a launching handle- you pull the string quickly and she twirls up into the air. Of course we have fun seeing how high we can launch her :o)

We also love to look over the edge of the railing up there and watch all of the people and cars below. Yesterday, Katie and I were looking at all the hustle and bustle and she says, "I wonder if life starts all over again once everyone is in Heaven." After thinking a few seconds more, she says, "Well I guess it doesn't have to cause life never ends, does it? We have everlasting life." Wow! She blows me away.

Katie is up from her quiet time and we are headed to the grocery store. Yum! Katie is eating us out of house and home!

All continues to go well. We have our weekly labs, scope and biopsy tomorrow. I'll let you know how it goes!

I just asked Katie what she would like to stay to you all. She says, "Thank you for praying for me. It really helped!"

God's grace and blessings to you all....

Love,
Laura & Katie

Friday, April 8, 2005 8:32 PM CDT

I do believe we are on the 'flat track' headed back to the gate!

I got a call from Angel Flight today and we have a pilot to get us home on Friday morning! His name is Bruce and we are so thankful for him!!! Our plan is to leave Friday morning at 9:30am and land between 12:30 and 1pm at Peachtree DeKalb Airport. Mike, my husband, will be there to pick us up and get us home. Then we plan to head to Camp Creek Elementary to visit Katie's class for the last few minutes of the school day :o) On Saturday we'll be playing at the house and hope to have lunch with Katie's Grandma and a few of her relatives. On Sunday we will go to church, have lunch with friends and then come home to celebrate my son, Hayden's 18th birthday and Eagle Scout Ceremony! I am SOOOOOOOOOOOOOO very proud of him! Then on Monday morning, we'll head back to Miami. Oh we just can't wait!!! Katie and I hope to be able to come back by the end of the month or first of May and then be home for good sometime in May.

Thanks so very much for all of your website notes, cards and gifts! You have truly made a difference for both of us. You've lifted us up, carried us through, and we're so glad you are still with us to celebrate the good times!

Katie and I have plans this weekend, so it may be Monday before I have another update. Please forgive me :o) But keep thinking about us! We need you!

We love you all bunches!
Laura & Katie

Thursday, April 7, 2005 11:30pm EST

Oh my goodness! I don't even know where to start!!!
What an absolutely wonderful week we have had.
As you can imagine, we have had a very busy time with Katie's brother, Michael, (aka 'Bubby' as she lovingly calls him :o) and Silly Daddy Mike, Hayden, Anna and her best friend Maggie. We played games, watched movies, went out to dinner every night (twice at South Beach!), went to the beach, had picnics, and caught up on lots of hugs and kisses! (See the new photos of Katie and her Bubby!)

The weather was beautiful! No rain here!!! Although it was a bit cool at the beginning of the week, it was nice and warm by mid-week. We were able to get a second room at the transplant house so Silly Mike, Bubby and Hayden stayed in one room, while Mommy, Anna, Maggie, and Katie stayed in the other. It was great to be close together.

We got a lot accomplished this week too! Katie had a scope and biopsy Tuesday and there is no rejection!!! (The angels are singing again!). She also had a CT Scan of her abdomen to check on the fluid and although it is still there, it is much smaller. Hoorah! The docs have started to wean the steroids. Yeah! Katie is tolerating her feeds well- she is now up to 30cc/hour and the TPN is down to 70cc/hr...and...they said she could eat chicken! Yipppeee! All other blood work and vital signs are doing great! Yahooooo! And guess what else... Mike was able to upgrade the computer system here at the Transplant House and install a wireless router so I now have internet access in our room!!! Way to go 'Mr. Handyman' Mike!!! (Now maybe I can get more DH work done too :o)

Above all, Katie and I both soaked in every moment with our wonderful family. We are both so incredibly blessed with the most wonderful, caring, supportive, and loving family for which we are deeply grateful.

And now for the BIG news!!!
On April 15th - 18th, I will be flying back to Atlanta/Lilburn to celebrate Hayden's 18th birthday and Eagle Scout Pinning Ceremony. And guess what!!!?!!! The docs have given permission for me to bring Katie with me! Hallelujah!!! It's only for the weekend, but oh what a wonderful one! Angel Flight is going to provide the private plane/pilots to get us there and back. In fact, the most wonderful Richard Smith, the Angel Flight pilot that flew us down for the transplant in January, is willing to be the pilot to fly us back to Miami on the 18th! (I don't have the name of the pilot that will be flying us to Atlanta yet). We are SOOOOOOOOOOOOOOOOOOO excited!!!!

Mrs. Barclay- Katie wants to drop by the school for a few minutes to say hi to everyone. I hope to do this on Friday afternoon. I'll let you know if we are able to get there soon enough (if not, we'll try Monday morning)- let me know what works best for you! :o)

OK. I have to go to bed now. I have lots of pictures to put up over the next couple of days, so stay tuned!

Hope every one else had a good spring break and I hope it stops raining there soon!

Lots of love....
Laura & Katie

Wednesday, April 6, 2005 10:18 AM CDT

Hey everyone!
We're having a great time!!!!
So sorry we've been too busy to update the website.
I promise to give you a full report by Friday.
Katie's brother left this morning and my family leaves tomorrow night.
Thanks for your patience and understanding!!!
Katie is doing very well!!!!
Hurray!

Love you lots,
laura

Saturday, April 2, 2005 1:20 PM CST

Yeah!!!! It's Saturday and Silly Daddy, Hayden and Anna come today!!!! Yahooooooo!!!!!!!!

It's a cloudy, rainy day today, but still very warm. Nice day for a nap- which Katie is doing right now! She says 'quiet time' is one of her favorite times of the day. She likes it when we lay down togther, snuggle and read stories. It doesn't take long before she's yawning and closing her eyes. She usually sleeps 2-3 hours. Our windows have those really thick curtains that block out all light, so the room is nice and dark. Most of the people who stay at the Transplant House are older adults and they are gone during the day to the hospital or doctor appointments, so it is also very quiet. What a blessing!

We plan to do lots of playing this weekend. Hope that the weather continues to be nice so we can go to the beach, stroll through the outdoor shops at Bayside, and eat under the umbrellas on Lincoln Street in South Beach! Anna plans to do some shopping :o) Katie plans to take lots of walks and show Silly Daddy all of her secret places along the nature trails and garden spots. It really is beautiful on the campus grounds.

One of our favorite activities right now is to go up on the 5th (and top) floor of the parking deck to feel the breeze, see the airplanes take off from the airport, look for pennies, and watch the sun set. Last night Katie took me all the way downstairs to the back of the building where we picked up some leaves and flower blooms that had fallen off the bushes and then we went back to the top of the parking deck and dropped the leaves and blooms of the side. She had such fun watching them race to the ground below. We also blew bubbles in the breeze and watched the bubbles float way up high in the sky. As we were walking around the parking deck, we watched the pigeons drink from the water puddles and Katie found a tennis ball, so we threw that back and forth to each other too :o) Never thought a parking deck could be so much fun!

I may not be able to post a journal entry tomorrow, so check back with us on Monday afternoon and we'll let you know how we're doing!

Have a great Sunday and say a prayer and an 'Amen' for me and Katie!

We love you all...
Laura & Katie

Friday, April 1, 2005 3:00pm EST

You won't believe this!
But Katie is once again not doing well....

Guess what! You don't have to believe it!
April Fools!!!
Teeeee-Heeeeee :o)
(I know- this really isn't a thing to joke about- but couldn't resist!)

We are doing great!
We've got a schedule now- of course the challenge is sticking to it. We try to have all of our morning 'chores' (meds, treatments and am care) done by 10am so we can do some school work, then play a little on the computer 11a-12noon, then eat lunch 12noon, read a story 1pm, have some quiet time 1:30-3:30, get through the afternoon 'chores', do some arts and crafts 4:30-5:30, take a walk outside and explore new places 5:30-6:30, come back in for dinner 6:30-7:00, straighten up the room, mix up the meds for tomorrow, and watch a movie or TV 7:00-8:00, finish off with the evening 'chores', and be in bed by 9:30pm.

Random thoughts:
Katie tried noodles for lunch today and can't wait to try other things. She's so excited to be able to eat and not worry about throwing it up!

She has a hard time keeping her finger out of her belly button! She says she's just making sure it's still there :o)

Linda, the school teacher came today and worked with Katie for an hour. Katie says it was boring- "Mrs. Barclay makes it much funner!!!" The teacher says Katie is very smart and that she'll have to bring work that is more challenging for Katie!

Ms. Hinton and William- Katie loves the Disney Princess Checker and TicTacToe set!!! Thank you!

Hammetts- The gifts you sent are great! Katie has already used the stickers, is wearing the bracelet, and used a bookmark for our story time this afternoon!

Jordan- notice the photo I put up today. Katie is wearing the outfit you sent her! She really likes it :o)

Katie's face is still puffy due to the steroids, but we should finish up next week and she'll look back to normal.

I'm taking some photos of the places and people here at the Transplant House and will be putting them up on the website over the next week to show you a little bit about where we are staying. It is truly a wonderful place. Most of the people who work here have had transplants themselves and are a tremendous support.

The weather is wonderful- 85 degrees, DRY and sunny! Come on down and visit us!!!! Hurry up Chastain!

We're huffing and puffing to try to send some nice weather your way!

Love you all bunches...
Laura & Katie

Thursday, March 31, 2005 12:55 AM CST

Yahooooo!
Katie is doing great.
We had our first clinic appointment today. We even got there on time! (miracle #4,005).
Everything is going well. I think I have the medications on a schedule I can handle now. Her tube feeds are up to 15ml/hr. I have permission to gradually increase them to 20ml/hr by Saturday and if she tolerates it OK, they will begin to decrease the TPN on Tuesday!

Katie's favorite things to eat right now are saltine crackers, warm bread, baked potatoes with butter, and applesauce. We'll add rice, rice krispies and a few other things next week. So far her new tummy is handling everything well :o)

We absolutely love being in the transplant house. Today after our clinic visit, we stopped by the hospital and went to visit the nurses on the PTSU (where we 'lived' for 8 weeks). They couldn't believe the difference in Katie. Of course being dressed in clothes and wearing shoes makes a difference, but the energy level, hopping, skipping, laughing and smile from ear to ear knocked them off their feet. Her color is so much better. Her eyes are twinkling. And she's talking 90 to nothing. It is so good to be 'free'.

I know as a nurse how difficult the hospital environment is, but living there for so many weeks has given me a totally different perspective. I had no idea the effect of constant stress and anxiety (even after starting the Dream House!). The constant sensory stimuli was overwhelming:
Machines beeping,
Babies crying (constantly)
Children screaming (LOUDLY!)
Alarms going off (even fire drills),
People coming in and out of your room constantly (and the need to have a constant heightened awareness of what care is due and what care is being done or not done as it should be),
Trying to handle surprises (orders being written or changed without explanation as well as tests being ordered or changed without notice),
The room being uncomfortable (too hot or too cold),
Trying to remember who the caregivers were (they didn't always tell you their names and we had 3 different ones every eight hours = 24 different people every 24 hours! And then imagine all of these people walking in and out of your room every 10 minutes! And of course they don't talk with each other so there is a lot of confusion),
Emptying the trash cans (we filled them up too fast unwrapping all of Katie's gifts!),
Performing all of Katie's direct care and g-tube medications,
Maintaining a flow sheet of all of Katie's intake and output, vital signs, weight, abdominal girth and blood sugars,
Playing games, reading stories, drawing pictures, making arts and crafts,
And....
Trying to 'stay up' for Katie :o)

It has been hard and I'm exhausted, but...do you know the song "Refiners Fire"? I truly believe I'm being refined.

And I truly believe that all I am experiencing is further strengthening me and giving me the skills I will need in the future to help thousands of children like Katie.

No matter how hard, I am truly grateful for this learning experience. I am so blessed to have Katie in my life.

And I am so thankful for all of you!

Have a wonderful day!
Laura

Wednesday, March 30, 2005 1:19 PM CST

Guess what, guess what, guess what!!!!!!
We made it!
Katie was discharged yesterday (Tuesday) afternoon at 3:00pm!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

HHHHHHAAAAAALLLLLLEEEEEELLLLLLUUUUUUUUHHHHHHHAAAAAAAA!!!!!!
Do you hear the angels singing?

Words cannot describe the feelings and emotions....

It took six wagon loads and the stroller to get everything out of the room. Once we got over to the Transplant House, it took 2 hours to unpack everything and another 2 hours to figure out where to put it all :o)

The home health nurse came at 5:00pm to make sure we had everything. Katie has 28 doses of medication, blood sugar checks every 6 hours with insulin doses about 3 times a day. Then there are two pumps for the TPN (Total Parenteral Nutrition- IV fluids with vitamins, minerals, lipids, etc.), and the G-tube feeds. Irrigation for the colostomy once a day and irrigation for the abdominal drain three times a day and the ileostomy bag that has to be emptied about every 2 hours. Whew!

It took me three hours this morning to get through everything! I'm sure I'll get faster as I get used to all of the meds, their dosages and schedules. Plus, some of these will be discontinued over the next 4 weeks.

The goal is to gradually increase her Gastic Tube feeds & oral feeds while decreasing the TPN (damages your liver when given over long periods of time). Once the steroids have been stopped (probably 2 more weeks), her blood sugar will go back to normal and we won't have to do blood sugar checks or give insulin. The abdominal drain should be removed in the next 2 weeks if we can stop the collection of fluid. And the ostomy drainage will slow down once her 'new tummy' gets used to the food (barring any more bouts of rejection!)

As you can see there are a lot of 'ifs'. But I do believe..... I believe now that we are in a less stressful and less anxiety producing environment where we can relax, get uninterrupted sleep, take walks without having to go to jail, and get back to some real play time and learning time (aka 'school work' :o) Katie will improve dramatically. Especially when I can take her home.

How do I know? Because one year ago, April 6th, I brough this angel home with me. She was small, thin, fraile, lethargic, had huge black circles around her eyes, threw HUGE tantrums, and did not trust a soul. Within 6 months, she had gained 6 pounds, grown 2 inches, her front teeth started to come in, her hair became silky and shiny and she played from sun up to sun down. She learned to ride a bike. She climbed dirt piles in the back yard faster that you can blink an eye. She ran, jumped, tumbled, played on the swing set, trampoline and tire swing and didn't want to stop. She was tan, rosy cheeked, bright eyed, and soaked in every minute of every day. She had a supportive environment that allowed her to feel secure, with consistent care, and family and friends that surrounded her with nurturing support. She, like most children, thrive in this environment.

My husband Mike, son Hayden and daugher Anna are coming down this next weekend (April 2nd - 7th) so we can celebrate our one year anniversary having Katie as a part of our family! Katie's brother, Michael (aka 'Bubby') will also join us Monday - Wednesday. We are so excited about being together. And how wonderful that Katie is out of the hospital to be with us!!!

Thank you all for your tremendous love, support and prayers. You have to know that you are a big part of why we have made it this far! We love you bunches!!!

Laura & Katie

PS- I don't have internet access in the room, so I have to go to the 'common' room to get on-line. This room is closed after 11:00pm so it may be that I'll update the website in the early evening or mornings now- alot will depend on how Katie's care schedule (meds, treatments and doctor appointments)goes and when I have the most time. I'll have new pictures up by tomorrow!

Monday, March 28, 2005 11:33pm EST

We had another wonderful day!
The problem is.... now that Katie has more energy, she's really wearing me out! This will be a short entry because I'm really sleepy tonight :o)

Katie had another scope and biopsy this morning. We'll get the results tomorrow. Hopefully there will be good news in the morning about when we might be able to be discharged.

I'll keep you posted!
Thanks so very much for all of the wonderful notes on the website. It makes me (and Katie!) feel so good.

I love you all....
Laura

Monday, March 28, 2005 7:20 AM CST

It's a miracle!
Yesterday was Sunday AND the third day of feedings and we didn't crash, get sick or create a new problem!!!! Hallelujah! It must have been all of those wonderful thoughts and prayers you sent our way yesterday :o) We felt them! Bless you bunches!

I almost hate to say this... but Katie is doing wonderful.
She is drinking, eating crackers, bread, jello, and popsicles. Everything is back to normal including her weight, output, vital signs, energy level and activity level. She was bouncing all over the place yesterday- literally! She was hopping, skipping and jumping :o) Praise God! We have continued to go AWOL each afternoon and have been taking trips to the Transplant House so Katie can see where we'll 'live' for a few weeks when we leave the hosptial. She is SOOOOOOOOOO excited. She was skipping up and down the hall outside our room yesterday and Ms. Pat (aka 'Grandma', the woman who stays at the transplant house at night in case anyone needs anything) stood there with me and watched Katie skip and we both had tears in our eyes. It was such a wonderful sight. Katie was smiling and laughing and so proud of herself. Yesterday was definitely a day to celebrate 'new life'!

And speaking of... we did have a wonderful Easter.
The Easter bunny did find us after all! I have pictures of course so be sure to check them out. I can't get them all on the page today, so I'll put up different ones tomorrow.
Dr. Kato loved our bunny outfits :o) And Katie has the perfect front teeth for a bunny too!

I want you all to know how absolutely, positively, wonderful it is to have the notes you leave in the guestbook. Being down here by ourselves has been hard at times and when I felt down and needed someone to 'talk' to (especially late at night), I would always pull up the website and read and re-read your encouraging words. Please know that you all are a huge part of why Katie and I have been able to get through this experience. Your prayers, support, gifts, and just being there for us has truly lifted our spirits and given us strength. Thank you from the bottom of our hearts.

This should be a great week. Maybe the docs will talk about letting us get out of here! I'll keep you posted.

Love you all bunches!
Laura and Katie
XOXOXOXOXOXOXOXOXOXOXO

Saturday, March 26, 2005 6:16 AM CST

Whew!
Now I think I can re-write my journal entry from yesterday.
It is amazing what 4 hours of uninterrupted sleep can do for you! :o)

You know when you are on a roller coaster ride... (are you holding your breath to see what I'm going to say? :o)... and you've gone through the mountains and valleys and then you hit the flat stretch that leads back to the exit? Well that's where I hope we are now- on the flat stretch... coasting...looking back over the wild ride and being very thankful that its over!

Katie's blood sugar, temperature, labs (woof, woof!), behavior, output, weight, abdominal circumference, and skin integrity are all back to 'normal' (whatever that is). The docs started her G-tube feeds yesterday at half strength and 5ml/hour (not as slow as I would have liked). The real test will be this weekend. Every time they have started feeds, Katie has gone into rejection or crashed. And she has crashed or become very ill every single Sunday for the last 5 weeks. So guess what we need tomorrow?!!! Please say a prayer for us in church. I so wanted to be out of the hospital for Easter. Think about us. Close your eyes and send us that wonderful, uplifting feeling you get on Easter Sunday when the sun is shining through the stain glass windows, the music proclaims the joy and awe of the day, you soak up every word spoken, and you look up at the cross with a deeply grateful soul and cry. Hold that moment. Feel it deep down and send it back to me...

I can't believe that I forgot to tell you something that happened on Thursday. Katie had just come out of the operating room and we were in the recovery room. The nurse was assessing Katie's condition, vital signs and inspecting the plethera of lines and tubes coming from her abdomen (it is quite intimidating). Katie and I were explaining everything when she and I both noticed that the doctors had removed the stitches (while she was in the OR)! It was a beautiful sight! The incision was so neat and clean. But as we were inspecting, Katie and I discovered a most amazing and wonderful thing!!! She had a belly button! Hallelujah!!! Oh how I wish I had my camera to capture Katie's face. She had a smile that shone like the sun. She said, "Look Mom! Oh my gosh! What is this? Is it a belly button! Hurray! Now I can be like everyone else!!!" I did my happy dance and the nurse cried. Oh what a wonderful feeling to belong....

And now for the funny story of yesterday. A few weeks ago when Lizzy came to see us, I asked Dr. Kato if I could take Katie outside on occassion to get some 'fresh' air (as fresh as it can be in a big city). He said sure. That afternoon, before Lizzy left, we took her 20 feet out the front door to see the water fountain, throw pennies and make wishes. We came back up to the floor, told the nurses all about our adventure and no one ever said a word about any violation of policy or protocol. They never asked for a doctor's order and they did not ask me to sign any forms. On Thursday of this week, I asked once again to take Katie outside and requested that her TPN (IV fluids with vitamins) be 'cycled' so that we could be unhooked and free for a few hours to go out for a walk. The docs said sure and wrote the order to cylce the fluids. Yesterday morning I asked the nurse about the medication schedule for the day so that I could plan for our walk. We discussed the fact that Katie needed to receive a unit of blood that would last about 3 hours and that she would take a nap until 4pm, but then we could go. She never said anything about a Doctor's order nor did she ask me to sign anything. So, when Katie got up from her nap she got in the stroller, we put on her hat, we told the nurse we would be back in a few minutes and we headed out. My cell phone number is taped to the front of Katie's chart and highlighted in yellow marker. No one called me. Instead, when we returned to the floor 45 minutes later, we had been turned in to the hospital administration and security for going awall! The charge nurse came to the room and said I was in BIG trouble. The administrator on call and a security guard came to our room and said they were going to have to file a report. I begged the administrator to fire me and send us back to Atlanta. It didn't work. I begged the security officer to haul us away and give us a vacation in a different prison. That didn't work either. They just laughed. I guess they figure that staying here is torture enough :o)

Well what else can happen! I guess I better not ask that. We all know that there are worse things that can happen!!!

I do hope you all have a very blessed Easter.
I will be praying for you, closing my eyes and feeling all of the thoughts you send my way.

His love and grace to you all,
Laura

P.S. New photos uploaded at 2pm on Saturday, March 26th: Katie with the Easter Bunny, Arts and crafts in the activity room, and a tea party with our Child Life Specialist, Rachel!

Friday, March 25, 2005 11:39 PM CST

So like I just spent the last two hours writing this beautiful journal entry and I lost it all when my computer froze.

It is now 12:50 am and I'm just too tired to start over.
I do apologize.

We're fine. I'll write more tomorrow :o)

Night night!
Laura

Thursday, March 24, 2005 11:30pm EST

So what do you do when you are on a roller-coaster and you are headed up a real steep incline?

Hold your breath? Look around and enjoy the view? Stare straight ahead and hold on tight? Or, look at the person seated next to you, laugh nervously and think, oh my goodness what am I doing, I'm going to die...

To tell you the truth, I'm too tired to decide tonight.

The last two days have been awful. I know my journal entry last night left you with questions and I wish I had the energy to give you every detail.

Last night after the horrific events, my blessed Katie, having suffered a lot of pain and loosing a lot of blood came back to the room, rested for about 2 hours and then sat up in the bed and said, "Let's play!" She got up in the chair and did arts and crafts and played 'Tea Party' (with the new china tea set the Easter Bunny brought to her room yesterday while we were gone for procedures). I'll have you know that beautiful angel sat there and smiled, laughed, played, colored a beautiful picture and served me tea. You may wonder how we survive some of the things we are going through. This explains it. How can I not be strong and support her when she is so very strong herself. God bless the child that suffers....

After yesterday's fiasco with the PICC line attempts, Katie lost a lot of blood. I was furious when I got back to the floor. The docs decided to schedule her for OR today to place a Hickman Central Line (like the one she had before the transplant- we need this type of line in order to be discharged). The risk with this type of line, as with any central line, is infection. But we decide it was the best option right now. They came for us very early this morning- I didn't even get my makeup on, breakfast or my hair or teeth brushed. They rushed us to the OR, only to have us sit and wait for an hour because it was Thursday and the docs have a conference meeting every Thursday morning. I always go prepared though, so Katie and I played Uno, CandyLand Old Maid, Hangman and made up our own board game. We even got some of the OR staff to play with us!

During surgery they found that Katie was collecting fluid around her left lung and once again in her abdomen! UUUUUUUGGGGGGGGHHHHHHHH! They drained both and now that she's getting chest percussion therapy and aerosols, the fluid has been drained, she's had a couple of doses of lasix and she has her new central line, Katie is doing better tonight :o) Another scope and biopsy was done this afternoon to followup on the rejection- we'll know the results tomorrow afternoon. Katie will also get a unit of blood in the morning which will help her feel better too.

And even after all of this, Katie still came back to the room after being gone for eight hours (2 hours under anesthesia) sat up, did arts and crafts and had another tea party. The child is amazing! She played with her game boy tonight, watched cartoons, opened mail, and was asking for something to eat. If I had been through what she has been through today (and believe me I feel like it!) I would be in the bed with the covers over my head and comatose (believe me again- I wish I was!!!).

The days are long, painful and tedious. Katie goes through so very much. Things change so fast and there is so much to think about and keep up with. It is easy to get overwhelmed. But when I think back over the day and recall the many precious moments, its all worth it... like when we were in the OR and Katie had been given the 'sleepy' medicine in her IV, she looks up at me and says, "Mom! You have 4 eyes! I don't want an ugly Mom with 4 eyes! I sure do feel funny. Wait! I don't want to close my eyes yet. I have to say my last words!!!" She puts her warm soft hands on my cheeks, looks into my eyes and says, "I love you so much Mommy." And then she's out. She lies there so calm and peaceful. I'm glad she has a few moments to rest, even if it is on the OR table!

She has worked so hard- her face is puffy, there are circles around her eyes, her skin is pale, bruises and scars are all over her precious little body. As I look around the room at the OR staff, I think... they have absolutely no idea what this child has been through. They busy themselves with their machines, protocols, procedures and equipment. They are hurried- frustrated when they can't find something or get something on time. They think about how they are going to be late for dinner or not get to eat at all. They talk of vacations, a party, an outfit they just bought, a diet they're on, or whether or not they have to work next weekend. I glance back at the angel sleeping quietly under the warming blanket. Dear God, I pray. Please keep her safe. Wrap her in your loving arms. Touch her with your healing hands. Give the doctors and staff the wisdom and skills to do a good job. Replenish her soul. Give her strength. Bring her back to me.

(There are those who notice. There was an ICU nurse who, sitting at the foot of Katie's bed the day after the second transplant, looks up at me and says, "This is a special little girl. I'm not a religious person, but I can sense that there is something special about Katie. I can feel it.")

The OR nurse escorts me out to the waiting room. I sit in a chair and stare at the television. The 'Court Channel' is on with news of the Michael Jackson trial, a teacher who killed her husband, and the boy that shot several people at his school. The world seems so far away. Outside events though huge and impactful, seem so insignificant. I make a call to my office to catch up on recent business and appointments. Its so hard to switch tracks. Its like I am in a time warp, a bubble, and the world is going on out there without me. I make a few more phone calls to keep in touch with the outside world and then I hear someone call my name. The nurse is asking me to come back to the OR. I jump tracks again and float away in my bubble.

And you know, each and every time she looks at me with those long eye lashes and crystal blue eyes, and says, "Mommy, thank you for being here with me. I couldn't do this without you." There is nothing in the world I'm missing that can beat that. I don't need anything else.

God bless us everyone...
Good night.
Laura

Wednesday, March 23, 2005 6:28 PM EST

The joke of the day:
What has blonde hair, blue eyes, looks like a princess and loves rollercoaster rides?

Answer: Katie baby!

Yesterday's journal entry was a 'high' on the rollercoaster right?
Well guess what today is....

Just after I wrote the journal entry yesterday, Dr. Kato walked in the room to tell me that he had just gotten the biopsy report from Sunday (TWO DAYS late!) and it showed moderate rejection (all of that vomiting, fever, etc this last weekend wasn't 'just' gastritis!). As a result, they did another scope and biopsy late last night and gave Katie a whopping steroid bolus. Of course this sends her blood sugar through the roof so she is now on an insulin drip and finger sticks every 2 hours to check her blood sugar levels. Instead of getting rid of meds and IV pumps, we have now added 4 more. Oh dear...

The docs decided to draw blood for several lab tests this morning to see if they can figure out exactly what type of rejection she is having (there are several types that present in different ways and thus respond to different types of treatments). They will probably do another scope and biopsy tomorrow to compare with last nights.

In the meantime, in order for us to be discharged, we have to resolve the rejection, get rid of the insulin drip, wean off the prograf drip (this is an anti-rejection med that has to be changed to an oral/gastric tube administration) and get a new IV line.

Oh well...I tried.
I do hope the Easter bunny can find us in the hospital.

Laura

Tuesday, March 22, 2005 1:17 PM CST

Ta-da!!!!
I'm back :o)
So sorry for the delay.
I arrived back in Miami around 4:30pm and went straight to my car only to find the battery dead. A very nice parking lot attendant jumped it for me and I headed back to the hospital as fast as I could. When Katie and I had finished covering each other with hugs and kisses, the docs decided to do a CT scan of Katie's abdomen. We didn't get back into the room until 11:30pm! By the time I tucked Katie in bed, took my shower and got my computer out to compose a journal entry at 1:30am, I realized I had left the phone cord in the room at the transplant house, so I had no internet access :o( Please forgive me for leaving you all in such suspense!

To recap the last 4 days, Katie really had a rought time. I felt so bad for Katie and Kelly! But true to form, Kelly is a wonderful and skilled nurse and handled everything beautifully. The problems have been high blood sugar, high blood pressure, abdominal pain, increased abdominal girth, vomiting and fever. In a nut shell, the CT Scan they did last night showed that the abdominal drain that was inserted a week ago Monday to drain the fluid that had collected in Katie's abdomen has not helped. In fact, it is worse and is compressing her stomach causing the vomiting and other symptoms.

The wonderful and awesome Dr. Garcia returned from Spain yesterday and walked in this morning and said, "Gee, I wonder if the collection is not fluid, but more of a jelly substance. That would explain why, even though the scan shows the catheter drain is in perfect location, there is no drainage. Let's try to liquify the jelly and get it out of there without doing anything invasive. Katie has been through enough!"

Yahooooooo!!!!!!! Someone is listening!!!!! Within an hour, Dr. Garcia had liquified the jelly and drained 350cc (this is a huge amount for a little 7 year old girls belly!). Katie's tummy looks so much better and she hasn't vomited since. Praise God from whom all blessings flow and we thank Him for Dr. Garcia!!!!

The blood sugar, blood pressure and temperature should all resolve as well. Katie and I made two trips around the nurses station this morning. We are determined to get better!

In fact....

I told Dr. Kato on rounds this morning that Katie and I are both sick and tired of being sick and tired. We explained that he had 72 hours and 23 minutes to finish what he needed us to do as an inpatient, because we wanted to be discharged by 11:00am on Friday morning :o) Since we'll be staying at the Transplant House on the hospital campus, we can still go to the clinic everyday for blood work or anything else he needs us for.

I truly believe with all my heart that if I can just get Katie out of the hospital she will do so much better. This is our 8th week and it is time to get away from the germs, get more than 2 hours of sleep at a time, and be in a calmer, quieter, more routine environment. It worked when I brought her home the first time and I believe it will work this time. If it doesn't we can always go back. We're only half a block from the hospital.

Besides... an Easter Egg hunt is going to be much more fun at the Transplant House! And we will be celebrating our one year anniversay having Katie as a part of our family!!!

Mike, Hayden and Anna were going to come for Easter weekend, but the fares were too high, so they are going to come for spring break, April 2nd-7th. Katie's brother, Michael (aka- 'Bubby') is also coming. We will be rested by then and be ready to have a wonderful time celebrating and enjoying time together.

Mary Dell you are a dear friend and an absolute hoot! 'Katie of South Beach' loved seeing the pictures of you in your 'Mother of all Mother's of the Groom' gown that she designed for you :o) I will have a photo uploaded here so everyone can see later this evening (so check back!). Thanks so very much for the Princess crown, sash and magic wand! (Will post photo of Katie all dressed up as well!). She had a blast granting wishes for all of the docs and nurses today. And of course, she made it very clear that her wish was to be gone by Friday!!!

Here's Katie's joke for the day: "Why did the skeleton stay home from the dance?" Answer: Because he had no 'body' to go with!!!! HAHAHAHAHAHAHAHAHAHA! The docs really liked this one :o)

Thank you all for your continued prayers, cards, gifts and notes. They are helping tremendously! Katie is feeling better now, so we'll be very busy playing with all of our arts and crafts and toys. One of the first things Katie and I will do when we are discharged is make a scrapbook of her journey. Thanks to all who have sent scrapbook and craft items! We will put them to good use.

We will also start school the week after Easter (we've done a little bit here and there, but Katie really hasn't felt well enough to do much). The hospital school teacher, Linda, will come to the Transplant House too! Katie will definitely be using all of the learning materials, books, and games you have sent.

And for those who are wondering, yes, I did have a wonderful time at home this past weekend. I think my family probably has bruises from all of the hugs and kisses I plastered them with! It was great to see all of my friends and neighbors. You all are such blessings to me and my family. We are so very grateful for all that you have done to support us.

Bless you bunches! We look forward to many sunny days ahead!

Laura & Katie

Wednesday, March 16, 2005 11:00PM EST

Well, because Monday and Tuesday were such bad days, I almost cancelled my plans to go home for the weekend.
But......
Amen! Amen! Amen!
'Ask and it shall be given.'
It took three days, but yesterday the docs finally started the IV antibiotic I have been begging them for. I refused to allow the administration of a diuretic and instead ask them for a fluid bolus, which she finally got last night (after all, with a fever of 104 for two days, concentrated urine, vomiting for 18 hours, and sunken eyes, she was dehydrated! She didn't need to loose more fluid). I begged them not to wait another day to drain Katie's abdominal fluid and they finally did it yesterday. And they gave her a low dose steroid bolus for the rash and itchies.

And guess what! We had a wonderful day today!!!! No more fever, no more vomiting, the rash is going away and the itchies are almost gone!!! And... they started the formula feedings through her stomach tube. And... they let her eat jello and a popsicle today!!!!! We are in heaven! Well at least I am. Katie won't truly be in heaven until she can have a thin crust cheese pizza from Dominos and a jar of Mt. Olive Dill Pickles :o)

I have a picture of the big popsicle event. Note the purple tounge! She has tolerated everthing well so far. But I'm cautious. It will take 3-5 days to determine how she is tolerating the formula feeds. Keep your heads bowed and your knees bent for this one!!!

And since Katie is doing better, I am going to return to Lilburn for a few days this weekend to be with my family. My dearest friend Kelly Coker is flying in tomorrow (Thursday) to stay with Katie while I'm gone. Kelly is also a 'retired' ICU nurse from Children's Healthcare of Atlanta. She and Katie love each other to pieces so I'm not sure who is more excited, Katie or Kelly! Jackie Nickens, Katie's case manager from Childkind, will also be coming down for Sunday and Monday to visit. So as you can see, Katie will have plenty of TLC and probably won't miss me a bit!

Because I will be gone for a few days, I will not be updating the web page again until Monday evening. So sorry to leave you all in suspense for so long! If you just have to have your 'Katie' fix, you can go back and read the earlier journal entries, especially the ones around the time of the second transplant (Feb 14-17th). Just pretend like this is 'All My Children' and there are reruns for a few days :0)

I do have two more photos for you to look at. The second one is a picture of Katie with Simon's mom, Lisa. If you would say an extra prayer for Lisa and Simon tonight. Lisa has been sick and not able to stay with Simon as she usually does. And Simon had surgery today. The docs went in to do some exploring and found some things they could fix that might help make Simon stronger while he waits for his transplant. We need to pray for a smooth recovery, growth and strength.

And the last photo is a gift to you from Katie! (Thank you Aunt Jan and Uncle Norris for the gifts!)

Happy St. Patty's Day everyone!!!!

God bless you all bunches,
Laura

Tuesday, March 15, 2005 6:59 PM CST

Well, it was another rough day.
Katie had fevers and vomited most of last night and this morning (neither of us slept). The docs came in this morning and decided to drain the abdominal fluid and did so this afternoon under general anesthesia. We won't know the results of the cultures or tests on the fluid until tomorrow. The Dermatologist came to see her this morning to try to figure out what was causing the rash. Hopefully we'll hear something from them (and the skin biopsy) in the morning as well. In my opinion.....Katie is just allergic to the hospital! I bet if I could get her out of here she would do a lot better! Wouldn't you do better if you could get more than 2 hours of sleep (uninterrupted no less!) at least once a week? Oh well...

I will say that this evening has been better. She has actually gone 5 hours with no fever or vomiting!!! I do hope we can get at least 4 hours of sleep tonight- even if it is interrupted :o)

Love to you all.
Laura

Monday, March 14, 2005 6:46 PM CST

Well...
we've had better days than this one,
because we really didn't have any fun.
The temp went up
so did the spit up
and the itchies were all on the run.

Yuck!
We started the day with shakes, chills and a temp over 104. Then we started vomiting and the rash and itchies got worse. So, the docs decided to take Katie to the special procedure room (mini OR) remove the old IV line and put in a new one. While they had her sedated they also did a scope (which looked fine on visual exam, we'll wait for the biopsy), removed the stitches from her gastric tube (at least this was progress!), and did a skin biopsy to see if they can figure out what is causing the rash. It took almost 5 hours to do all of that. Needless to say we are both exhausted (I was one of the lovely assistants for the procedures :o).

This evening is no better. She is still spiking fevers, throwing up and the rash is spreading down her arms and legs. I have finally convinced the docs and nurses that we need to alternate tylenol and motrin to better control her fevers (took 1.5 hours to get motrin this morning). Her temp only went to 103 this evening. We've been on a new antibiotic for 24 hours now, so hopefully tomorrow will be better.

I have to share this with you.
Katie gets very nervous when she has to get a new IV. She looked at me this morning (just before we went to the procedure room) and said, "Mom, we need to say a prayer." And as she closed her eyes and bowed her head, she said, "Dear God, please help my fever go down. Help me to be brave when I get my line replaced. Keep me safe and send your angels to watch over me." I couldn't have said it better myself.

So....
Now it's time to go to bed
we just cannot hold our heads
we'll hope that tomorrow
will bring us less sorrow
and we can be happy instead!

Laura

Sunday, March 13, 2005 7:07 PM CST

Yeah! We had so much fun with Lizzy!!!
Thank you so much for coming to visit Lizzy. We played games, read stories, took naps and even went outside for the very first time since January 29th!!!!

Katie loved feeling the sunshine and the breeze. We threw pennies in the waterfountain, tried to find the different kinds of palm trees, looked at the flowers and watched the birds jumping in and out of the bushes. We hope to be able to do that often in the next few weeks :o)

Katie still has the rash and the fever. The plan is to replace her IV line tomorrow and possibly tap the fluid in her abdomen to see if it is infected and causing the fever. They will sedate her of course. Blood cultures and urine cultures are still negative.

Otherwise, she's doing very well. She's happy, playing, laughing and telling the doctors all the jokes from the cards Mrs. Cheese's class sent and the joke books she received from many of you for her birthday! It's lots of fun :o)

Ms. Beth Maxwell and Kristin, Katie did receive the box of goodies you sent. Thank you so much for putting all of that together. She will have a lot of fun playing with it. She hopes to be able to call the school one day and talk with you to say thanks!

Ms. Kay, thank you for the box of Easter goodies! I'm saving them for a few more days until we're closer to Easter and we'll decorate her room. She will love the bunny glasses and ears!!! Thanks for thinking of her.

Think about us tomorrow and hope we find the source of the fever!

I put up some new pictures of Katie and Lizzy having fun :o)
We love you Lizzy!!!!! Come back soon!

Believe it or not, I got this done by 8:40pm! I can go to be early tonight!!! Yahoooooooo!

Love to you all...
Laura

Saturday, March 12, 2005 11:00pm EST

Oh my gosh, it's the middle of March!
We've been in Miami for 6 weeks. My how time flies when you're having fun :O)

This is post-op day 25 for transplant #2.
AND.....this was the 14th and LAST day of OKT3!!!!!!!!
Hallelujah!!! Hear the angels singing??????

We do so hope that the end of OKT3 will also mean the end of the rash and the fever. Katie spiked fevers of 102 several times today and she's covered in a prickly rash from head to toe. The cultures are negative so far, but it's only been 18 hours. But even with the fever and itchies, Katie has been in great spirits! She has laughed, cut jokes (thanks for all who sent the joke books! We're having fun :o), played games and trashed the room with a silly string battle with Lizzy.

It's been so fun having Lizzy here! She is a tremendous help. She stayed with Katie all afternoon while I went back to the Transplant House and did laundry, cleaned up the room, sorted presents and did some work (Yes Michele! I am doing my homework :o)

And speaking of presents. I know that several of you have left messages to find out if we received your gifts. I do apologize for taking so long to respond, but it is difficult to get back to everyone quickly. My computer/email time is very limited and I am exhausted by the end of the day and have trouble keeping my eyes open and holding a pen to write. Please forgive me! If you would like to send an email to : dreamhousefamily@bellsouth.net, I'll respond as soon as I can, but please don't be offended if it's a short and sweet response! Katie and I will be sending proper thank yous soon!

For now:
Healthfield staff please know that we got the gifts you sent a while back and Katie absolutely loves everything you sent! The pajamas fit prefectly!
MPUMC staff, thank you for the package you sent a few week ago. She loves everything!
Grannie, Bubby, Rachel and Miranda- The pjs and socks are perfect! Please tell Bob and Dean thank you for their gifts too!
Toren we've already finished the book "One Hundred Dresses". Katie and I both loved the story. Thanks so much for sharing it with us.
Ken and Judy we did get your gifts and they are much loved! Simon's Mom was in tears when we gave her your gift for Simon. She'll be sending you a note!

I do want you all to know how much you all have lifted Katie's spirits and brightened her days with all of your cards, letters and gifts. She just giggles and squeals with delight! Her eyes sparkle and her smile lights up the room. She sometimes sits back and stares and then looks up at me and says "Wow! This is really neat stuff! I have some good friends don't I? I've never really had friends before. It feels good! We need to tell them thank you Mama!" She's good too- she is amazing at remembering who gives her things. And at night, she always remembers to say a prayer for all of those who care for her and help her. You all are included!

The plan for tonight and tomorrow is to watch her fever and possibly change out her IV line (frequently the source of infection when they've been in too long). The docs mentioned starting formula tube feedings on Monday, but a lot depends on what happens with the fever and culture reports.

As always..... I'll keep you posted!

Riddle:
What is flat but round,
smart but blonde,
close at heart but far away,
and is happy but exhausted when finished with the day?

Answer:
Me!!!

And Lynn Chastain- I was so touched by your dream. I too dream of a grand home coming party! Won't it be a blessed event......

Good night my friends. Sweet dreams to all.

Laura

Friday, March 11, 2005 11:30 pm EST

Ever had a party hang over? It's fun :o)
We had a blast today playing with the new toys and games Katie received for her birthday. Playdoh, movies, 'Operation', Disney 'Sorry', Game Boy games, coloring, wearing new clothes, stickers and looking at beautiful birthday cards! Whew! What fun!!!

Katie did well today. She had another scope and biopsy (done routinely twice a week for the first two months after transplant to watch for signs of rejection) as well as a repeat ultrasound to check the fluid in her abdomen. The final reports won't be back until tomorrow, but on the surface everything looked good :o)

Katie did spike a temperature this evening of 101. If it spikes again, we'll have to do the whole blood culture, urine culture and chest x-ray routine. I just hope that if it does spike again, it happens between 8am and 10pm. It's rough having to go through all of that in the middle of the night. Especially when they have to draw peripheral blood cultures (where they stick her arm). Katie gets so upset and it ruins the restful night.

All of the cultures done with previous temperature spikes have been negative (no infection). She has a rash on her abdomen (reaction to tall of the high powered meds she's on) and I think the fever is part of this. She has been very immunosuppressed with the OKT3 however, so we'll have to wait and see.

Speaking of OKT3, tomorrow is the last dose! Hurray!!! And since we have completed the course of this medication, the docs will begin tube feedings on Monday to see if this set of organs works! This will be a BIG week- it is at this time that Katie began having trouble after the first transplant.

I have a few more pictures for you. I hope they make you smile :o) It's our small way of sending something back for all of the wonderful things you have done for us.

Rose are Red,
Violets are Blue,
Every night,
Katie and I pray for you too!

We love you bunches,
Laura

Thursday, March 10, 2005 12:26 am EST

It's hard to know where to begin with this journal entry tonight. It has been an absolutely, positively, heavenly day. I am in tears at the moment, because I am so deeply moved and touched with all that today has meant to Katie, me, my family and Katie's family- and how many of you out there cared enough to share it with us.

Hallelujah, she's alive....
I try not to think 'backwards' to much- on how much we've been through and how close we came to loosing her (I have trouble standing up and breathing when I do :o) But today I can't help but reflect a little, so much has happened. I never dreamed I would experience what I've been through. I never imagined that a little blue eyed, blonde headed little girl could go through what she has been through and still have the spirit of everlasting life, strength as tough as nails, and the joy to great each new day as the greatest gift of all.

I never, in my wildest fantasies, would have believed that I could feel this close to heaven. It's hard to describe the impact this has had on my faith, my life, my persepective, my family, my friends, and my professional career- and I probably won't know it completely for another 50 years, if ever.

Katie woke up this morning with a smile on her face. She has been talking since last May about 'when I turn seven and I'm a big girl'. Today was her big sday and she was alive and beautiful and able to enjoy it.

We started the day by bringing over a wagon load and more of packages, boxes, bags, envelopes and cards. Lizzy and I walked into the room and Katie let out a squeal! She was so very excited. We spent all day- all three of us- opening cards and gifts. We haven't finished the gifts. Lizzy and I went back twice, and there are still more at the Transplant House that we just couldn't carry. And we still aren't through all the cards either! Katie loves this. She went to bed tonight thoroughly pleased that we had more to look at tomorrow :o)

I don't even know how to put into words how overwhelmed we are with all of your notes in the guestbook of this website, the cards, notes, letters and packages you have sent, and they kind words of support and prayers that you have so generously showered us with. We are sincerely grateful.

You have truly touched Katie. I wish I could have captured in a photo the awe and wonder that exploded from Katie's face when she looked at all of the cards and gifts today. I just don't think there are enough mega-bytes to hold it all, but I tried. You can see how happy she was in the first photo I have for you tonight.

Once again, Katie was in 'form' for the doctors this morning. Dr. Kato's expressions and laughter get bigger and better each day :o) I do hope we add a little bit of sunshine to their mornings. You can see 'Mr. Katie' with Dr. Kato in tonight's second photo.

Well, it wasn't Chuck E.Cheese and thin crust cheese pizza, but the party was a big success! Katie was determined to get down to the activity room all by herself, pushing her own IV pole all the way. She was huffing and puffing by the time she got there, but by-golly she did it!

We decorated the room with 'Hello Kitty' and hung streamers from the ceiling. There were about 10 other children that joined the party. We couldn't have food, so 'Silly Mommy' decided to make party hats out of the paper plates and use the cups for a bowling game. We played bingo and then pulverized a pinata until we got to the toys inside. And of course, there were more gifts to open from the staff and new friends! Thank you for being there Ms. Lisa and Juan- you made it extra special!!!

The third photo of the night is of the transplant team coming to the party to wish Katie a BIG happy birthday! We thanked Dr. Kato and the staff for making it possible!!!

Katie tired pretty quickly, so we came back to rest for a bit before we continued our party fun in the room. It has been great having Lizzy here to help and share in the celebration. Katie wants to do everything with her.

By this evening we were all pooped. I'm sure Katie will have many sweet dreams tonight. Thank you all for making it so very, very special.

I'll put new photos up each night for the next several so that you can see more pictures of the party day.

May it be a good night for you all...
Laura

Wednesday, March 9, 2005 11:39 PM CST

Yeah two great days in a row!
Katie hasn't felt this good since February 11th, just before the second transplant!

Today was even more wonderful because Lizzy came :o) Elizabeth is our sitter who takes care of Katie when I have to work. She is very close to Kate. You can imagine how happy Katie was to see her when she walked in the door this afternoon!!! She will stay amd play until Sunday. Hurray- a little taste of home :o)

The docs are talking about possibly removing Katie's naso-gastric tube in the morning (the tube that goes in her nose, down her throat and into her stomach). It is progress and it would be great not to have the tube in all of her birthday pictures! However, I hate for her to have to go through the removal on her birthday (it's quick, but not fun). We'll see what the docs say during rounds in the morning.

Otherwise, we are set to have a wonderful birthday party tomorrow in the activity/play room at the end of the hall. Katie says this is the best birthday ever because she received over 100 birthday cards in the mail today! Yahooooooo! Thank you everyone for sending them. And if you count the emails and notes on this website, she got over 200 :o) If you take time to read through them, you will find that they come from all over the world- literally!- there is one from Austrailia, Norway, Canada and Alaska! She is SOOOOOOOOOOOOO excited!

I don't konw who gets the most support, Katie or me! It is extremely comforting to read the things you write and know that you care. I've had a rough time the last two weeks and I want you to know how much it helps to read all of your supportive comments. God bless you all!

I have one new picture for you tonight. Lizzy gave Katie the cutest pair of pajamas. Katie just had to show them off! And of course she had to wear the glasses that go with any outfit!!! I'll have a lot more pictures of the party and gifts in the coming days. Hope you enjoy them.

I'm going to turn in now. It's 1:00am and we're going to have a BIG day!

I love you one and all.
Laura

Tuesday, March 8, 2005 9:30pm EST

Whew! Another good day :o)
Still have a water belly, and dealing with the 'grumpy' effects of the steroid bolus, but all in all, she's doing much better! Still waiting on biopsy results (to make sure rejection is gone) and the repeat ultrasound on Friday (to check the size of the fluid pockets).

And guess what! Our sitter and bestest friend Lizzy comes tomorrow to help celebrate Katie's birthday on Thursday! I pick her up at the Miami airport tomorrow- please pray for her safe travel.

Thank you all who have sent birthday presents! I have them and will give them to her on Thursday! She won't be able to eat (nor will most of the kids on the floor) so we're playing games and giving away lots of trinkets and prizes. We've handed out invitations to the kids on the floor and everyone's looking forward to it! Say a birthday prayer for her on Thurday :o)

I have some new pictures for you today. I ask that you please understand the fact that Katie is my foster daughter and that the pictures I post on this website are for the benefit of Katie's family and friends to stay in touch with her and know that she is doing well. Please do not replicate, publicly display, or publish these photos without consent from her family.

The first picture is one of Katie just before her second transplant. She made a valentine for her Grannie, brother and sissy.

The second photo is another silly picture of Katie dressing up for the doctors. Thank you girls from Taylor Made Baskets and Gifts in Lilburn for sending us the dress-up gear!

The third is a picture of Katie and her 'Silly Daddy' making like turtles in the fish tank down the hall :o) You should have seen the faces of the staff as they walked by! What a 'Candid Camera' opportunity!!! Katie laughed so hard she could hardly hold her turtle face!

I hope you enjoy these photos and know that my sweet angel Katie is a blessing to all who know her and love her. Her face glows with sunshine, her eyes sparkle like stars, her smile shines with the light of heaven! And actually I'm the one who has to wear the over-sized sunglasses to tolerate the radiance!!!!!

God bless you for all you mean to us!!!
We love you all dearly,
Laura and Katie

Monday, March 7, 2005 8:50pm EST

Whew! Another close call. But I think we averted a trip to the ICU. Thanks to the quick action of the doctors and nurses (after I pitched a small fit :o).

Katie had a much better day today.
She was sitting up, talking, playing Mario on the Nintendo and playing games with me (Winnie the Pooh Memory, Mickey Mouse Yahtzee and I Spy were the specials of today). She did tire easily though and took a long nap this afternoon.

The extra IV fluids got her urine and ostomy output back on track. The insulin drip got her sugars under control. The steroid bolus decreased the inflammation. Her NG output is down (good thing). The Tylenol with codiene got rid of the abdominal pain. And the OKT3 continues to hold off the rejection. The scope and biopsy today looked good at first glance- we will get the biopsy results tomorrow. We are hoping that Katie's body will reabsorb the abdominal fluid before it gets infected so that she won't have to go through a tap. Right now there is no fever. They will do a repeat ultrasound at the end of the week to re-check the size and distribution of the fluid and see if it's getting smaller or bigger. As usual, we take it day by day.

Katie will sleep better tonight and thus will I.
I hope you do too :o)

Love,
Laura

Sunday, March 6, 2005 9:45pm EST

Well, the fever is still gone, but we have other problems now.

The docs think that Katie is 'third spacing' again and collecting fluid in her abdomen which is putting pressure on her small intestines and stomach.

She is vomiting, experiencing abdominal pain, general discomfort and restlessness. Her urinary output has decreased again and her blood sugars are way up. Katie is receiving a whole bunch of medications tonight and is back on an insulin drip which will mean blood sugar checks every 2 hours (bummer!).

They did the CT Scan on Friday and an ultrasound today to check on the fluid collection in her abdomen. They will most likely have to go in and drain it tomorrow (under general anesthesia) :o( I'm sure they will do another scope and biopsy as well.

I know you all think about us all the time, but please continue to keep us in your prayers. I'm trying hard to stay 'up' for Katie. She's going through so much.

Kathy Slaton- we're hanging on tight to the prayer cloth you made for us! We might have it worn out pretty soon. Thanks so very much for sending it.

L.

Saturday, March 5, 2005 8:45pm EST

You know how you get real sick and you finally go to the doctor and as soon as you get back from the appointment, you feel better (like you didn't need to go to all the trouble to go to the doctor- you could have just waited it out). Well, right after we went for the CT Scan to find the source of Katie's fever, she felt better and hasn't had a fever since :o)

Today has been a really good day! Katie sat in the chair longer than she has since February 11th! We played games all day (Hands Down, Monopoly Jr, Topple, and Mickey Mouse Yahtzee). And....
She had lengthy phone conversations with her Grandmother and Sissy,
Wrote a story for 'Chastain' (you'll love it Terry!),
Read through a hundred cards and drawings from the students at Skagway City School in Skagway, Alaska! (Thank you Dayna- she LOVED them!),
Read the most wonderful story written and illustrated by her kindergarten classmates from Mrs. Barclay's class entitled, "The Totally True Story of Princess Katie and How She Rescued the Animals" (What a beautiful book you all made!)
Learned all about George Washington from the letter, notes and pictures that Mrs. Cheese and her class sent (good job everyone!),
Played with all of the stickers and sticker book that Mrs. Steele sent (we loved all the goodies- Katies LOVES the cross!!!!)
And, believe it or not... in the middle of all of this, Katie and I both took a two hour nap!

Whew! What a busy (and wonderful!) day. Thank you all for everything you sent to make it so wonderful!!! Please know how wonderful you make Katie feel with all of your thoughts, prayers, card, notes, and gifts. You brighten every day.

It sure makes the time we spend here 'feel' better. Katie has to go through lots of 'yucky' stuff. She gets real nervous when she has to have a scope of her ostomies. She is so tired of having to wake up every 2 to 4 hours and get her finger pricked to check her blood sugar. She has five different bandages/dressings that have to be changed every day or so and she hates the tape that has to be peeled off. All of her joints and muscles ache when she gets a fever. The tube in her nose itches the inside of her nose and rubs her throat raw. Her neck and right shoulder hurt from having a large IV catheter in the right side of her neck- we are down to ONLY 8 IV pumps!. And a lot of the medicine she has to take gives her a rash, the shakes or a headache :o( (Thank goodness we have gotten rid of the breathing tube, urinary catheter, the abdominal drain, 4 IV, 5 IV pumps, and the face mask and oxygen!)

Now that the fever is gone (and will hopefully stay gone), we have to tolerate 4 more days of the yucky OKT3 medicine and then gradually work on building up her stamina. She has very little resistance to infection right now, so we have to stay in her room (can't walk in the halls or go to the playroom). Her little legs have gotten so thin from being in the bed for three weeks. With the fever gone, her joint/muscle pain should be gone too, so maybe now we can work on a few exercises to strengthen them.

My Mom and Dad made it home safely! Thanks for all of your prayers.

I uploaded a few new photos for you to see. One is of our family during one of their visits to see Katie here in Miami. One is of the helicopter that we watch as they bring patient's to the hospital. And the last is another photo of the beautiful hospital grounds.

Thank you to all of you who have sent jokes to us. Katie has had a blast with them!

And thank you for taking the time to read our journal enteries and share these experiences with us. It feels so good not to be alone....

We love you all bunches!
Laura & Katie

Friday, March 4, 2005 11:00pm EST

Whew! What a day.

We've been through a lot of testing today to try and figure out where the fever is coming from.

The scope and biopsy this morning looked really good= NO rejection!!! Praise the Lord and pass the Pizza! Well... not yet. They do not want Katie to eat for several more weeks. I was totally amazed at how well Katie took the news. She was disappointed that she won't get pizza for her birthday, but she was very satisfied when I told her that it just meant we would get to have TWO parties- one for her birthday (with toys and trinkets in the pinata instead of candy/food- most of the other kids on the floor won't be able to eat either :o) and a second party when she is discharged and CAN eat pizza!

We also did a bunch of cultures, xrays and even a CT Scan of Katie's abdomen. All of the previous cultures that have been drawn are negative so far. The docs are suspicious about some fluid in Katie's abdomen and are thinking This may be where the fever is coming from. They are going to watch it for another 48 hours. If the fever continues or gets worse, they will have to go in and drain it. The risk with this is that if it is encapsulated and it ruptures during the tap, it could spread the infection all over the abdomen-yuck! This would not be good for Katie's new tummy that is still trying to 'feel at home'. Pray for Katie's tummy!

Otherwise, today was a pretty good day. She did seem to have more energy. We played lots of games- Candy Land, Topple, Old Maid, Uno, Perfection, and a Rugrats game. She and I both took a one hour nap this afternoon and a good thing too! We spent almost 5 hours down in radiology.

Thanks for all of the jokes you have sent us. Katie really likes them! We'll let you know what the docs think :0)

We love you all bunches and bunches!!!
Have a great weekend.

Laura & Katie

Thursday, March 3, 2005 9:30pm EST

Yeeeeeeeee-Hahhhhhhhhhhhh! And Praise the Lord from whom all blessing flow!!!!!!

The doctors say that the OKT3 is working and that the rejection is resolving!!!!! Yahooooooo! Katie will have another scope and biopsy tomorrow to make sure, but everything looks good so far! Can you feel my joy from where you are? Can you see the glow from my eyes and smile on the horizon? Can you sense the thrill of excitement across the 800 miles? Well if not, that's because I'm too tired to share all of those things with you right now :o) But maybe by the time we get discharged to the Transplant House I'll be up to snuff and then we'll share the experience together!

We continue working to keep her hydrated. The docs have increased the 'water' in her TPN (IV diet) and that seems to be doing the trick. Her blood sugars have been stable, the insulin drip was discontinued and we no longer have to do finger sticks every 4 hours :o) Her incision looks great, her ostomies look healthy and all systems are working!

However... (of course there has to be one), she now has a fever. The OKT3 kills all of the body's lymphocytes (that attack the donor organs). And at the same time leaves the body almost defenseless against infection. We've kept Katie in her room and washed our hands (and Katie's!) frequently, but the body has it's own germs that can infect itself (Katie did this frequently before the transplant). The docs have drawn all sorts of cultures so hopefully we'll have results soon and know what we're fighting. And even though she's had fevers of 103 for the last 24 hours, she is still in good spirits.

I have to tell you that of the hundreds if not thousands of children I have cared for, known, or met, I have never seen a child with the strength of mind, character, and spirit such as Katie. She is truly remarkable. The only time she ever complains is when things are really bad, and even then, it's not much. She tries so very hard to do her best. She gives strength to all of those around her (including me!).

I have some new pictures for you today. They show 'Silly Daddy' and Katie looking at the fish in the fish tank. I also included another picture of the campus grounds and the doctors on the transplant team. Please keep all of them in your prayers. I have tremendous respect for them. They truly dedicate themselves and go way beyond the norm to do their best for their patients. They are so very good to Katie (they even laugh at her jokes!)

My parents are leaving in the early morning (Friday). Please keep them in your prayers as they travel the long 16 hours home. It was wonderful having them here. Katie adores them and I felt so much better having someone here with us this week.

Sorry I don't have another funny to share with you today. Katie's fever zapped most of her energy so we played it low. In fact, it's 9:30pm, Katie is asleep and I'm getting ready to take my shower and go to be myself :o) This last week has really worn us both out!

I would like to ask for one more prayer. I have met a friend through this website from Canada. He is a living lung donor. The young lady that received his transplant, Jaye, is really struggling to survive. Please keep her and her family in your prayers. Getting a transplant is a wonderful thing, but it is a life long struggle to keep it.

I do hope you all have a peaceful and restful night.
God's blessings and grace upon you all.....
Laura

Wednesday, March 2, 2005 9:59 PM CST

Ohhhhhh...it's a beautiful day in the neighborhood!!!

We had a good day today! Katie received a fourth dose of OKT3 today (mostest powerful anti-rejection drug). She did spike a fever this pm and the docs are still working to control her hydration and blood sugar, but otherwise she has been fine.

Katie once again pulled one over on the docs. I went out into the hall as the docs made their way to Katie's room for rounds this morning and told them that I was concerned about the effect that all the medicine was having on Katie. I escorted them in the room and they found Katie sitting up in a chair with a granny wig and more funny glasses with a blanket across her lap and her feet propped up on the bedside commode :o) It was hysterical! She played the part so well too. She cocked her head to one side, dropped her jaw, and laid her hands in her lap. She looked comatose. The staff were laughing so hard they couldn't stand up. It was a sight to see for all of us!!! When you go down to the bottom of this page you can click on the 'View Photos' button and see a picture of 'Old Lady Katie'.

My Dad stayed with Katie a few hours this afternoon so that my Mom and I could go shopping for Katie's seventh birthday next week (March 10th). We plan to have a party in the activity room down the hall. She is so excited. When the doctors asked what she wanted for her birthday she said, "Cheese Pizza". That's all she wants in the whole wide world right now. I'm not sure if her stomach will be ready by then, but the docs said they would look into it. She is having a 'Hello Kitty' party and will pass out invitations to the staff and patients on the floor tomorrow and Friday. If anyone is 'in the neighborhood' and wants to come, let us know! :o)

When you go to view the photos, you will also find a picture that Katie colored for a new friend we have here at the hospital. I have talked about Simon in my previous journals. He and his mother Lisa are wonderful and so kind to Katie (and me!). Lisa goes home on the weekends to be with her husband and twin girls and when she comes back she frequently brings goodies for Katie. So, Katie wanted to give something back to Simon :o) Just thought I would share it with you.

I have mentioned in earlier writings how beautiful it is here on hospital/medical center campus. You will also find a picture of one of the courtyards where a lot of the staff, families and visitors mingle to get fresh air and sunshine. It is so refreshing when I take walks and get to see such pleasant surroundings- healing to the mind, body and soul. I can't wait until I can take Katie out for walks. Dr. Kato said I could any day now!

Special thanks to Nadine Campbell and her 2nd, 3rh & 4th grade students! We loved your cards and letters. Katie was very impressed with how well you drew the pictures and wrote the notes. Thank you so very much!

Mary Dell Borneman- Katie says you are welcome to borrow her hospital gown for your son's wedding, but she's not yet willing to part with the crazy glasses. Maybe she'll change her mind in a few days :o) We love you and all the funny things your write. You make Katie laugh! (and me too!)

Speaking of laughing... if any of you have cute, fun jokes appropriate for a 6/7 year old, could you send them our way? Katie loves to tell jokes (as you can tell) and she needs some new material. Thanks for helping!

Judy Steele- Katie loves your poems. She likes the way you write and make the words rhyme. She likes it most though, because it's about her :o)

Thank you to everyone for all that you do for me and Katie!
Our love to you all!!!!
Katie & Laura

Tuesday, March 1, 2005 11:38pm EST

Well.... it was a busy day, but a good one.
Katie did not have a fever and, at first glance, the scope indicates that the rejection may be slowing down (ie., the medications are working :o) So far all labs and blood work are OK. We are praying that the OKT3 (anti-rejection medication) will not affect her lungs, kidneys or liver. She did get out of bed to a chair twice today and tolerated it well. We hope to make it out into the hall tomorrow. Pretty soon we'll be back to our laps around the nurses station!

My parents, 'Memaw' and 'Peepops', spent the morning with us and got to experience our routine. Katie just loves having them here.

In the afternoon, our wonderful friend, Juan (a volunteer Grandpa) came and stayed with Katie so that I could go shopping and out to dinner with my folks. We all had a wonderful time!!! Juan is the greatest and Katie loves him dearly.

I have to go and check Katie's blood sugar. She is still on an insulin drip so I have to check it every 2 hours around the clock. Once she's off the steroids, the blood sugars should return to normal and we can stop the insulin and sugar checks. Whew!

Sleep tight everyone and I'll 'talk' with you tomorrow!
Bless you all bunches & bunches!


Okay, just one more thing- I had to reboot my computer after checking the blood sugar just to tell you this...

This morning when the entire Transplant team of doctors and nurses made their rounds, I went out in the hall to greet them and told them that I was worried about Katie. I explained that she looked different this morning and I wanted them to give me their opinion. Dr. Kato looked worried and hurried into the room. Katie was in the bed with the covers over her head. When Dr. Kato asked Katie to show herself so he could examine her, she pulled back the covers and proudly displayed a pair of glasses that had goofy eye balls dangling from neon colored slinkies! I wish you could have seen Dr. Kato's face! The whole Transplant team errupted in laughter (and relief I'm sure :o) Katie handed out chocolates to everyone and apologized for scaring them. It was tons of fun seeing Katie enjoying herself (and feeling well enought to do so!)

OK... I'm done :o) Night, night!
L

Monday, February 28, 2005 9:12 PM CST

Hurray!!!!!!!!
Katie is doing well enough to go back to a regular room :o)
Yahhhhhoooooooo!!!!!

She has had two doses of the monster drug 'OKT3' (12 more to go) and did much better today. All systems are go and the temperature was much lower today. No rashes, no pain, and lots of peepee :o) Hallelujah! She is still in rejection and we won't know if the medications are effective until tomorrow or Thursday (depends on when they do the next biopsy).

However....Katie was in much better spirits today (she felt better!). One of the docs that oversee's Katie's care in the ICU is named Dr. Birdee. When he walked in the room this morning on rounds Katie, with a gleam in her eye, said, "Tweet, Tweet, Tweet". I wish you could have seen the doctor's face. I don't know who was laughing more- the doctor, Katie or me. It was wonderful to see my Katie shine through her very tired and batter body.

Once we settled into the room this evening, I gave her a bath, changed her linens, and walked back over to the Transplant House to get my 'spend the night' stuff. I'm on my way back to her now, so I have to make this note short. My parents made it back down here today to help me this week :o) God bless them. So for those of you who have been worried about me, Katie and I both will get lots of TLC in the next several days!

Thanks for being so concerned about us!
Love to you all....
L

Saturday & Sunday, Feb 25 & 26

Current Update as of Sunday, Feb 27 8:30pm: Katie and I both made it through the day- Praise God!!! We've been awake for 36 hours though. Katie has had to work harder than I have. She's exhausted but stable. The doctors unloaded all of their ammunition this morning. They will perform biopsies every day to check on the effectiveness of the anti-rejection medications. Katie's vital signs are high, but stable. She is peeing!!! Hallelujah! Right now they are watching her temperature. It's been up around 103 most of the day. The fever, all of the potent medications and exhaustion have given her a headache. Hopefully tonight she'll rest. I will too.

We felt all of your prayers today. I know that is what got us through. Thank you. We need you!


Entry for Saturday, Feb 26, 11:58pm:
Well, believe it or not, Katie and I have been in Miami for four weeks! One month down... two or five more to go?

It seems so unreal at times. I'm glad I have this journal to chronicle our daily experiences. As I think back over all that has happened I get quite overwhelmed. My head, heart and soul are quite heavy.

Sorry to do this to you, but I thought I would record some reflective thoughts for the 'historical' journal... If you’d rather skip this part, you can go straight to the bottom of this page and get to the update on Katie’s current condition :o)

______________________________________________________________________

I had some quiet time today (while Katie was napping), to think back on life before our journey began and how my thoughts, feelings, and perspectives have changed as a result of the last 28 days.

If I had to title this journal entry, I might call it, "Around the world (inside- out and back) in 28 days." Or, "Touched By An Angel". Or maybe, "Pushing the Limits", "The Surreal Life of a Foster Mom" or "Katie's Believe It Or Not Life". Better yet, this seems most applicable... "The Surreal Life of a Foster Mom who was touched by an angel while pushing the limits on a trip around the world to help Katie (believe it or not) have life."

It does seem surreal, like I'm watching myself from a distance, in a far away land, encapsulated in a dream, not knowing from one moment to the next what is going to happen.

Each day I get up around 7:00am to get dressed, fold up my bed and linens and get ready for the docs to make preliminary rounds by 7:30am. I wake Katie up somewhere between 8 and 9am (depends on how much sleep we got the night before!). I get her on to the potty chair and then into a bedside chair. I give her a sponge bath, including her hair, put clean pajamas on, brush her teeth, and give her morning meds. She watches TV for an hour and then I insist that she do a little school work.

She is practicing printing letters and numbers, remembering sight words (3-4 letter words), reading, and simple addition problems. Katie is quite bright. During the teacher conference last fall, her teacher reported that as of November, Katie had already mastered 75% of the kindergarten curriculum! Here in Miami, the homebound teacher at the hospital says she's already mastered their entire kindergarten curriculum and is well into first grade work! (Mommy is proud :o)

Katie also tries to make an entry in her journal. She likes to draw a picture of something she has experienced and then sound out a few words to describe the scene. On Feb 13th, the day before 'the crash', she drew a picture of herself undergoing a small bowel scope. She included amazing detail. Of course the size and spatial properties of the equipment, the doctors and her body tell you a lot regarding her feelings about the procedure (she hates it!)

Ordinarily we then get up and take a lap around the nurses station. If the activity room is open, Katie loves to go in and make crafts. Ana, the volunteer who coordinates the activities, is very artistic and crafty. Katie just loves the beautiful things she makes. The room is decorated with things children have made and given back to Ana. Katie also likes to play with the dollhouse in the room and the Nintendo. After about 30 minutes though, she's tired and ready to back to the room.

At noon she gets back into bed and watches some more cartoons. Around 1:00pm she's ready for a nap and usually sleeps 1-3 hours. I have a music CD of relaxation music that I used to play for her every night at home. I brought it with us and play it for naps. The headphones also drown out noise in the hall and the alarms on the pumps and equipment. She looks so relaxed and peaceful when she sleeps.

I put a ‘Do Not Disturb’ sign on her door and run back to the Transplant House to get mail, make phone calls, write thank yous, and do laundry while she sleeps. When I return she’s ready to read a story, play a game, and take another lap around the nurses station :o) She loves for me to read to her. She loves to play ‘Candy Land Old Maid’ (thanks Borneman’s!). She laughs every time I get the Old Maid card because one of the nurses thought I was Katie’s grandmother! Her favorite time of day is mail time. She loves to look at everyone’s letters, notes, cards and packages. I wish I could have videotaped the moment we opened a huge banner signed by all of the students from her Elementary School. She laughed like I have not heard her in months. Thank you to all of the students and teachers who took the time to make it. It’s beautiful!!! I try to acknowledge each of you who are so thoughtful to send things to her, but I know I’ve gotten behind and missed several. It’s hard to focus on anything but Katie when she’s not doing well. Please forgive me if I have not written you back or sent you a personal thank you for your kindness. Know that we are very grateful.

Katie likes to watch TV in the evenings. On many nights I’ll bring a VCR movie from the Transplant House (they have a little library of movies) and Katie will let me snuggle up in the bed with her to watch. Those are precious moments. In the evening when things are winding down, she’s a little pooped, and the lights are out, she’ll let me get close to her. That’s usually when we do our best communicating. She’ll tell me things she remembers. Things she scared of. Things she dreams of. She’ll stroke my face, look into my eyes, and say “I love you”. I can’t put into words what it feels like to have her very soft, warm palm on my cheek. It’s as if she melts right into me. After a few minutes, she’s had enough of ‘closeness’ and she’s ready to have her space.

I sleep on a folding cot beside her bed. We say our prayers. Katie will usually ask questions or talk about her memories of being at the Dream House with 'silly' Daddy, 'cool' Hayden, 'pretty' Anna, Meeko (our grey tabby cat) and Tippie (our dog- 1/2 collie & 1/2 husky) until I tell her its time to go to sleep :o)

Santa brought Katie a beautiful light-up angel with fiber optic wings (about 1 foot tall). We have her on a perch in the corner of our hospital room. The iridescent glow falls softly on Katie, blanketing her with an angel’s prayer. Katie knows her guardian angels are watching over her. She told the Operating Room staff so. In fact, the nurse anesthetist was so touched by Katie’s prayer and reassurance to me that her angels would be with her during surgery, that she came to see Katie on ‘crash day’ (post op day #17) and said that Katie had touched her heart and changed her life. Katie does that to people doesn’t she?

At night I reflect on the day and wonder what will happen tomorrow. There is little routine except for the schedule I try to impose on the staff for Katie’s benefit. She does so much better with structure. It is her security in a world where she can depend on so little. My thoughts vary from the many awesome blessings that God showers us with to the many unknowns which I try not to worry over. I do believe that our perfect course has been perfectly charted by our Master. There is nothing to fear. And although many of my personality strengths have served me well to make me who I am, they also create a tremendous challenge in situations such as this- where I am forced to surrender totally to His will. I survive by focusing on Katie. She needs that. She deserves that. She soaks it in. She depends on it. She’s alive because of it.

To keep my perspective and clear the cobwebs, I do take breaks during the afternoons. I get outside, reach for the true blue sky, absorb the fresh ocean breeze, and soak in the warm sunshine. It is beautiful here. My daily therapy is the nice walk between the hospital and the Transplant House. The campus grounds throughout the University of Miami are gorgeous. Palm trees are everywhere waving their lofty arms in the constant breeze. Everything is green. Brightly colored Impatients (flowers) frame every corner. There are nature trails, water fountains, benches tucked in quiet corners, picnic tables on shaded patios, sandwich cafes, and of course, McDonalds, Dunkin Donuts, and Subway Sandwiches :o) I’ve even taken a drive and gone exploring. Key Biscayne is beautiful. The Bayside area is very nice too. I love to eat at Bubba Gump’s Shrimp Factory and walk through the shops. I have recently discovered South Beach and Lincoln Road. Anyone who loves to shop and/or people watch would find this spot heaven!!! You see, I know where all the important things are!

Believe it or not, I even have a friend here! Her name is Lisa and she is from the Daytona area. Her five month old son, Simon, is in the step-down unit (Annex as we call it here) waiting on a multi-visceral transplant similar to Katie’s. Being able to talk with her, play with Simon, go out to dinner with her, and just knowing she’s here with me has been an incredible blessing. Thank you Lisa, for your generous spirit, loving heart, and your friendship. You make my days so much better!

Well, enough of the historical stuff. I guess the real reason you are visiting this website today is to find out about Katie’s day, today!

Unfortunately, Saturday has not been a good one. Katie is weak, shaky, tired, pale, scared and once again in mild rejection. Her urinary output is down. Urine tests show that her kidneys are having trouble. Her blood sugars are going up so she’s getting insulin every 4 hours. The docs have increased her IV fluids to flush out her kidneys and will aggressively treat the rejection with a war chest full of potent ammunition. Katie won’t feel good for several days. We are on post-op day 10 and we’ve only been out of the ICU for four days. Although Dr. Kato is very concerned, he continues to say that he has never had a transplant patient do as well as Katie- on either the first or second transplant. As we all are, He too is impressed by her strength, determination and spirit. We’ll see how things go over the next couple of days.

Please pray for Dr. Kato, Dr. Selvaggi, Dr. Garcia, Dr. Revus and the nursing staff. We’ll all have to work hard. Pray that Katie will continue to have strength of will and peace of mind and spirit.

I thank God for you, your prayers, kindness, friendship and love. It is a significant support in carrying us through.

With deepest gratitude,
Laura

Friday, February 25, 2005 4:35 PM CST

Well, I'm not sure if it was the itchies, anxiety, stress, or thoughts going 90 miles a second, but Katie was restless last night, so she nor I got more that an hours sleep. As you can imagine today has been a 'grumpy' day.

The good news is that the itchies did go away today after we discontinued the pain meds (we think she is allergic to anything related to morphine). And, thank goodness, she has not had any pain today!

This evening the doctor will remove the abdominal drain- Hurray! Progress and one less thing to haul during our laps around the nurses station :o)

And the touching moment of the day came when Katie and I were very frustrated this morning (and grumpy)... I was encouraging her to help me with something and she was whinning and not feeling well. She looked up at me with her big, beautiful, blue eyes and said, "I'm sorry Mom. I really love you. If you weren't taking care of me, I'd probably be dead." We hugged, cried and gave each other a big kiss :o)

I love her to pieces....

L

Thursday, February 24, 2005 5:51 PM CST

Man what a difference 4 hours of sleep does for ya!
We love being in our own room. It's much quieter and definitely more comfortable!

Katie had an allergic reaction to a new pain medication they tried her on, so we've been dealing with 'the itchies' for the last 36 hours. The medication was discontinued this afternoon and she has been getting benadryl and atarax (to control the itching), so hopefully tonight will be even more restful :o)

Katie and I have had a few talks about what happened to her last week (She finally asked how she ended up in ICU again). She got teary-eyed when she asked if she almost died. I am constantly amazed at the depth of her understanding and feeling. Today when Dr. Kato walked in her room, she was prepared and had a piece of candy to give to him. She said, "Thank you for saving my life Dr. Kato." He didn't know what to say. Katie thought that he didn't hear her, so she said it again. Finally Dr. Kato was able to respond, "Your welcome Katie". He truly is a wonderful man.

She continues to gain strength and is more playful during the mid-day (by nature she is not a morning person :o). Not much will change over the next couple of days. Sometime next week, they will begin to introduce formula feedings through her Gastric tube. We'll need big prayers then. This is when we started to have trouble last time...

I read the notes you leave in the guest book to Katie each night. This is one of the best parts of her day (the other is when she gets the cards, letters and packages you send in the mail!). She is so pleased that so many people are thinking about her and praying for her. Please know that you all are a big part of her recovery! She gains strength, confidence and healing from you and your prayers!!!!

We love you bunches!
Laura & Katie

Wednesday, February 23, 2005 6:25 PM CST

Yahoooooooo!

Katie was moved to a private room today!
We both hope we don't have to see the ICU again for a long, long time!

Katie is doing great. We're back up on the post transplant unit and Katie went for her first lap around the nurses station tonight :o)

All vital signs and lab work are good. All organs are functioning. Her color is good and she has a smile on her face (that's the best part!).

For the rest of this week we'll work on building our strength and stamina and getting back to our school work. We have the most wonderful school teacher, Linda, that comes to work with Katie. She will even come to the Transplant House when we are discharged from the hospital and move over there! Now to get her back on a sleep schedule..... :o)

Take care everyone. And as always.... thank you so very much for all of your thoughts and prayers!

Laura & Katie

Tuesday, February 22, 2005 8:07 AM CST

CURRENT UPDATE, as of Tuesday, Feb 22, 10pm:
Whew! Katie is doing great :o) We left the ICU today and were to go up to the 6th floor to the Post Transplant Unit and a regular room, but they were full. So, we are now in the step-down unit until there is a room available on the floor (hopefully tomorrow). At least Katie has a TV so she can watch cartoons. She got rid of her foley catheter today and is alert, playing games, smiling and back to saying, "I love you Mommy. You take such good care of me." Oh how I love to hear those words :o)

Pray that we have the strength to get through this recovery period one more time (and praise God that we have the opportunity!).

UPdate as of 8am, Tuesday:
She's doing better!
Her lungs are clearing up, she's breathing on her own and we hope to leave the ICU today! I'll write more this evening!

Love to you all...
L

Sunday, February 20, 2005 5:13 PM CST

Things are about the same today.

Katie is still having a hard time breathing. She is on oxygen and a special breathing mask (so far we have been able to avoid re-intubation). Dr. Kato thinks it is fluid around her lungs that is causing the difficulty. He ordered some medications and treatments today to try and get rid of it.

At least she is resting more comfortable today. Her vital signs are stable, lab work is pretty good, and she looks better today. Her eyes are clear and her color is nice and pink. All vital systems are functioning well, so I do think it is just a matter of a few more days in the ICU and she'll be doing much better. Keep the prayers coming!

Bless you all bunches :o)
Laura

Saturday, February 19, 2005 9:48 AM CST

CURRENT UPDATE:
Katie had a rough night (Saturday night). She is back on 60% oxygen and CPAP (which is a special face mask that gives her an extra boost of air when she breathes in). If she doesn't improve today, they will have to intubate her again. Please say a prayer for her lungs- that they clear up and she breathes easier! Thanks!!!


Hello everyone! Katie sends a big smile and a warm hug of thanks to you all for your continued support and prayers.

She continues to improve. All organs are functioning and bloodwork is stable. She has been weaned off oxygen and is now on room air. The docs removed one of the IVs last night (she still has two others). She is peeing up a storm to get rid of all the fluid. Her face looks almost back to normal and her arms and legs are much less swollen today.

I continue to be amazed, in awe, and get dizzy when I look back over the last 5 days and realize how close she came to death and the miracles that occurred to save her. We continue to get notes from all over the world from so many of you who have prayed for her. I know without a doubt that you got God's attention and He sent His angels to save her. Katie and I will never be able to put into words the emotion, the wonder, the overwhelming sense of joy and happiness in the gift of life that you all have given us through your prayer, faith and love. Please know that my family and Katie recognize the importance, value and blessing of this gift. We respect it, honor it and will use it to His glory.

The journey begins a new. We will support Katie with all of our heart and soul to continue the discovery of her life, purpose and mission. For we know she is a very special little girl- a gift from heaven.

Have a wonderful weekend! We are!!!!

Love,
Laura & Katie

Thursday, February 17, 2005 9:45 PM CST

Another miraculous day!

Just as before, Katie's strength, determination and spirit continue to amaze everyone at the hospital. We now have staff coming from all over the hospital to meet her. They have heard the story and want to lay eyes on 'the miracle child'.

The progress today has been wonderful. Her vital signs are great. All organ functions are back to normal- Yippppeeee! (I never thought I'd be so glad to see pee-pee :o) They discontinued the breathing tube/ventilator, so she only has a face mask with a little bit of oxygen. She is sitting up, with her eyes open and making sure that everyone knows when she is uncomfortable, itching, or wants to watch a VCR movie. That's my Katie!!!

She's still real puffy, but now that her kidneys are working again, that will resolve. Our job tomorrow is to get her coughing, deep breathing and turning from side to side more. I keep telling her that she and I are a team and if we help each other, each day will get better and easier. She does understand this and tries real hard.

Now that the most critical 48 hour period is over, I'm breathing a little easier too. The next two weeks will be the next critical time. The docs will go very slowly as they progress her recovery. It has to work this time.

I tell Katie about all of your love, prayers, and notes. She loves hearing about them. Please know how much she appreciates all of your kind words and thoughts. She usually asks me to read the guestbook notes at least twice :o) Thanks for being such a wonderful part of her life. You have made a huge difference!

Love,
Laura

Wednesday, February 16, 2005 8:54 PM CST

Praise be to God and to Him all the glory...

Today was a good day. Although Katie is not awake yet (still in a drug induced coma), her heart rate does elevate when we talk with her :o) Her vital signs are stable. There is no fever. Blood test results are good. Her liver and kidneys are struggling, but slowly improving.

She will be in the ICU for 1-2 weeks. Then go to the step-down unit for a week or so. It will take her some time to recover from all that she's been through. The 48 hours after surgery are the most critical- she passed today with flying colors. We hope for the same or better tomorrow! The next critical period will be the next two weeks. As her organs recover and begin to function, the chances for infection and rejection will be high.

During transplant rounds this morning (where all of the transplant doctors, fellows, residents and interns stand around the bed and talk about the patient), the head transplant physician (who started the only two bowel transplant programs in this country- Pittsburg and Miami), was in the middle of explaining Katie's situation when he actually choked up, had to stop, turn his head, swallow a few times, then looked at me, looked at Katie, and said, "You all have to understand this. Things like this just don't 'happen' (by themselves)."

People all over the hospital are coming by. Other parents, staff, students. They are all in awe. It is so incredible to witness His power and know that others are better and stronger by knowing Katie's story.

I have heard from so many of you about the numbers of people who were praying for Katie yesterday and every day. There have to be thousands. I do hope I have the chance, soon, to talk with a nurse or someone who was in the OR room that night. There had to be an undeniable heavenly glow, celestial aura, and a constant breeze from angel wings. I can't wait to talk with Katie and hear about her chat with Jesus- for I know He was holding her hand. And knowing Katie, He probably didn't get two words in :o)

Thank you to each and every one of you, all over the world, who have shared in this miracle. I imagine that God is having to wear His ear plugs right now!

Good night. And indeed it is....
L

Tuesday, February 15, 2005 11:12 AM CST

CURRENT UPDATE as of 7:00am Wednesday, February 16th:

She made it. Barely. Dr. Kato's words: "There is no human or medical explanation why she is still with us. When we opened her up, the original transplant was dead. I cannot explain how she stayed alive."

Laura's words: "I can." There was no more time. Katie held on by the hand of Jesus. It happened according to His plan.

I was at Katie's bedside just before she went down for the second transplant. The nurse caring for her, Maureen, stood on the opposite side of the bed. A very serious, stern, but professional nurse, she held Katie's hand, stroked the top of Katie's head, looked up at me with eyes full of wonder and said, "This is a very special little girl." They all know it. Even if they don't believe or understand, they sense it. Even in deep sleep, Katie is a witness, a testimony to the powerful hand of God.

Dr. Kato explains that her recovery will be hour by hour. It will be difficult. There are many complicating factors this time. Two weeks of very strong medications (several with chemotherapeutic properties), 6 hours with very low blood pressure and thus low perfusion/oxygenation, a third surgery in 48 hours, an open abdomen for 24 hours, a third person's organs and bacteria present, a second transplant procedure, and the limitations of the human body to tolerate and recover from seemingly impossible circumstances.

We will take it one hour at a time. She is obviously strong. It is obviously 'meant to be'. There is obviously a purpose. And if this purpose goes no further than today, oh what a glorious, awesome purpose for her life. No matter how short or long her time here with us - I cannot put into words the impact she has had on my family, her family, the staff, the doctors, and I'm sure many of you who now read this note. Each moment beyond this point and time is one more miracle. And should it end sooner that we would like, no one must be disheartened or discouraged. For the miracle of today is enough to last a lifetime and more.

I ask that each of you offer a prayer of thanksgiving on bended knee. For there is no greater gift than the life of His Son, or that of our own. I know I am changed forever. To be a part of this is a gift far greater than I realize even now.

Please forgive me if I am not able to call or respond to each of you in a more personal way. Believe me I wish I could, for I am deeply grateful for every one of you- your thoughtfulness, prayers, and constant support have been what has sustained Katie, me and my family. I don't know how I will ever be able to return the proper thanks. You may have to wait until we are rejoicing together in heaven :o)

I respect and honor the blessing that has come through Katie and the opportunity that my family has had to be a part of her life and God's plan for her. I will be true to His charge that He has given me- to be her earthly guardian at this time. It will be difficult to balance this responsibility with others that also exist in my life and the life of my family and the Dream House. But I know that He will not give me anything I cannot handle. I ask for your continued prayers, patience, understanding and support. It does take a village to raise a child- especially this special one. I am extremely grateful that you are willing to be a part of this village with me.

As of 7:00am this morning, Katie is in ICU, stable, and beginning the road to recovery. For the next several days I will have limited cell phone use, and will only be able to check emails and add updates in the late evenings. Thanks for your understanding.

May God bless you one and all.
Laura


UPDATE as of 9:30pm Tuesday 15th:

Some of you may not be surprised...I'm not. The new donor organs are a perfect match. They arrived in Miami around 8pm. Katie was taken to the OR and surgery began around 9pm. The surgery will take 6-9 hours. Mike, Hayden, Anna, and my Mom and Dad are here with us. We're going to sleep a few hours and go back over to the hospital to be there when she gets back to the ICU. Thank you so very, very, much for all of your prayers. We are so glad that you all are here with us to witness these miracles...L

Update as of 12 noon, Tuesday, Feb 15th:

Sorry for the delay in getting information to you all. It has been a rough two days.

Sunday evening Katie began having difficulties. By Monday morning she was very ill. Katie was taken to the ICU, but only stayed an hour and was rushed to the operating room. At the moment they still aren't 100% sure, but all indications are that Katie is experiencing 'Severe Acute Rejection'. It happens very quickly. In some cases, only one of the transplanted organs is targeted. Unfortuantely for Katie, she has ischemic damage in all 5 of her transplanted organs (all of her own organs are fine- praise God! The fact that she has her own liver is what is keeping her alive). She is experiencing the worst of the worse. This condition is very life threatening. Her only chance at the moment is another transplant. And there isn't much time.

This morning when I was standing in the hallway outside the ICU waiting to go back to see Katie, one of the transplant doctors came up to me and said, "Boy, you must really have some angels watching over you. I just got word that there may be another donor for Katie. There is a patient in Texas with Katie's blood type. I am flying out there myself today to evaluate the organs and see if they will work. If they will, I will bring them back for her." My he fly on the wings of angels.

A few minutes later another transplant doctor came by to give me a hug. She said, "Do you know how lucky you are? There are several other children who desperately need a transplant, but Katie was chosen because of her age." I don't believe in luck.

Once I was at Katie's bedside, the main transplant doctor came by and said, "I don't want you to get too excited yet. We still have a lot of things to check out before we will know if this donor will be a good fit. It is remarkable that it is the same blood type as Katie. And the timing is unbelievable. This would truly be a miracle." And this doctor has been a non-believer :o) Katie knows she is special.

And so do I. She has been a good and faithful servant. She has said many times that she would like to meet her Heavenly Father. And I do believe that if she knocks and He opens the door, she will go home. However, it is almost unbelievable how many people she has touched- down here in Miami, at home, and now through this website, people all over the world. Katie has suffered a lot of pain and loss in her young, short life and I do not wish her more. Recovery from this type of rejection and another transplant will be very difficult at the least. She has already experienced more than I will in my entire lifetime. But she is also a chosen one. And God's plan for her is perfect. He may not yet be finished with her work here.

Thank you everyone for your prayers. We feel them. And all of those around us feel them. She glows with His love. You sense it when you walk in the room. All that have worked with her have fallen in love with her. She is a shining star. I love her deeply and know that whether she is taken Home or is allowed to stay with me a little longer, me and my family have been so incredibly blessed to have been a part of her life and touched by one of God's sweetest angels.

God bless you all.
Laura

Sunday, February 13, 2005 11:03 AM CST

Whew! We sure are glad Saturday is over.

Today is a better day. We have been on the right antibiotics for 24 hours and the fever is gone- Hallelujah!!!! The intestinal biopsy did show some mild rejection, but the docs are not concerned. They feel it is a reaction to the infection. Regardless, they do have to treat it with high dose steroids which in turn makes Katie's blood sugar skyrocket. So in addition to all of the antibiotics and immunosuppressants, we are doing finger sticks every 4 hours and getting insulin shots. After a fluid bolus last night and having no fever, Katie looks and feels a lot better today.

Thank you so very much for all of your thoughts and prayers. See how good they work?!

Katie and I both wish a very happy Valentines Day and send you all of our love.

XOXOXOXOXOXOXOXO
Laura & Katie

Saturday, February 12, 2005 9:28 AM CST

Well.... I thought today would be a restful day...
But, it seems Katie is having a hard time right now.
Her fever is persistant and she has a lot of GI upset. The docs will run some tests today to see if they can figure out what is going on. She does not feel good.

Although days like these are to be expected, please think of us and pray for strength and stamina.

I'll give you an update at the end of the day...

Love to all...
Laura


LATEST UPDATE AT 4pm:
Katie has run a temp of 102 most of the day. All tests results are OK. They are suspecting an infection in one of her IV lines. This is OK! They've started antibiotics. We can treat this pretty quick. Thanks for your thoughts and prayers!

Friday, February 11, 2005 7:38 PM CST

Today was more peaceful :o)
Katie rested more- had a two hour nap this afternoon!
Unfortunately, she is still spiking fevers though. The docs still don't know where it is coming from. Otherwise, we went to the playroom today and did arts & crafts again (we're building a castle out of paper!) We visit the fish tank often. Today we even had a visit from some of the Marlin baseball players! Katie got a hug from the Marlin mascot :o)

This weekend should be restful. Not too much planned. The discharge planning has taken place and the home care meds and equipment have been ordered. Everything should be in place by Wednesday so that we can be discharged by Friday. Of course, it all depends on this fever.

Please pray for the function of Katie's new 'tummy parts' too. Everything is OK- just need to continue to improve on absorbing medications that Katie needs to prevent rejection.

A HUGE thank you goes to Mrs. Barclay and her Kindergarten class (Katie's class) they sent a wonderful care package today that included a scrapbook with pictures of all of the kids in the class. It is a piece of art and we are extremely grateful to Mrs. Barclay for sharing her creative talents and all of Katie's friends who shared their pictures with us!

Thank you to our sweetest Lizzy, Miss Kathy & Miss Lisa, Amy Hinton & William, Mrs. Cheese and her class, Aunt SooSoo, Aunt Nancy & Grandma- for their care packages.

And thank you to all of you who send us cards. I want you to know that mail time in the afternoon is absolutely our most favorite time of day!!! You all bring bring smiles to Katie's face and comfort to her soul. Bless you for your kindness and thoughtfulness.

We love you all!
Laura (& Katie too!)

Thursday, February 10, 2005 9:48 PM CST

Whew! Today was tough.
Lots of tough things to get through (testing, blood drawing, IVs, scopes, medications, etc.)
It was hard on Katie and it wore mommy out, so I had to take some mental health time this evening.

There is a gentleman by the name of Juan here at the hospital. He is known as 'Gramps' to the staff and children. Thick, snow white hair, dark tanned shin, sparkeling eyes, and a smile that lights up the room. He is an angel....His granddaughter had a transplant two years ago and didn't make it. He now volunteers to sit and play with the transplant patients on Tuesdays and Thursdays. He and Katie have become big buddies. Juan stayed with Katie this evening so I could escape. Please say a prayer of thanks for Juan. He was my salvation today.

I had dinner at the Bubba Gump Shrimp Factory (yum!) and strolled through the shops at 'Bayside'. It was a beautiful evening... 76 degrees, light breeze, blue sky, gorgeous sunset... a little different from what you have had today in Atlanta!!!! If anyone wants to come visit us, you are welcome! It's beautiful down here :o) I'm better now.

Katie is running a low grade temp so she is back on IV anitbiotics. They won't know what the temp is from (drug reaction, left-over surgical reaction, or infection) until the blood work comes back.

My Mom and Dad (Carolyn and Fred Omundson) are coming down to visit us next week (Tuedsay -Friday) HALLELUIAH!!!!! Please pray for their safe travel.

Thank you everyone who has so generously sent food to the house for my family (Michael, Hayden and Anna). It has been such a blessing. We appreciate it very much!

Love you all bunches and bunches!!!
Laura

Wednesday, February 9, 2005 5:00 PM CST

Yeah! I finally have email access in the hospital room :o) Its nice to be able to check the website and show Katie all of the wonderful notes you leave for her! She loves knowing that so many people care about her. Bless you all for your interest, time and willingness to be a part of our journey!

Well, we're a few steps closer to leaving the hospital. The ostomy nurse came by today to inventory and order the supplies we will need, the docs had a new IV inserted into Katie's left arm (this will allow for the removal of the surgical IV line that is in her neck-yeah!), and they increased the rate of her formula infusion through her stomach tube (she's tolerating it well- we have to get up to 70 cc's per hour to discontinue the IVFs- this weaning process will probably take several weeks).

Katie was in the playroom again this morning and making her laps around the nurses station :o) She did not complain about abdominal pain at all today (post-op day 12!) The homebound school teacher came again today and said that according to Florida's curriculum, Katie has already mastered all of the Kindergarten material, so she is starting Katie on first grade work!

The weather is beautiful down here! I see from the weather reports that Atlanta/Lilburn is in the 40s and windy! It's in the mid 70s here with beautiful blue sky and lots of sunshine. We feel for you...If you want some, come join us!!!

Happy Ash Wednesday everyone!
Katie and I decided to give up 'pain' for lent :o)

Love to you all...
Laura

Tuesday, February 8, 2005 12:51 AM CST

Guess What????!!!!
If... everything continues to go smoothly....
We will be discharged from the hospital by the end of next week!!! YAAAAAHHHHHHOOOOOOOO!!!!!

But, We're trying not to get too excited. A lot can happen in the next ten days. A lot of good can happen too though! We claim it :o)

Katie has done very well yesterday and today. The docs started her formula feedings yesterday and so far so good! Today they converted two more medications to oral/G-tube administration (instead of IV). Katie continues her walks around the floor (I think she does this just to get the cheers from the staff as she passes the nurses station :o)and loves the play/activity room. A few of her blood levels are still slightly out of whack, but the docs are not concerned at this point. They feel this is just due to some of the meds and as they are discontinued or converted to oral/g-tube forms they will improve.

If anyone is able to help us with something, we need the following items:
slipper socks with non-skid soles, for shoe size 13-1 (she loves the ones with animals on them)or slippers (must have thin soles- she has trouble balancing on the ones with lots of padding where the sole is an inch thick)
pajamas size 8 (two piece ones where the top buttons or snaps up with elastic waist band)
Hand-held games (with batteries!)
Books on tape/cd (for young girls 6-10 years old)
Books to read!
Paperback books to read (Easy readers Level 1, 2 or 3)

Anything that you want to send would be great! Remember to send things to the Transplant House, c/o Laura Moore, 1500 NW 12th Ave, Miami, FL 33136

Love you all!
Laura

Monday, February 7, 2005 12:55 AM CST

WOOOOO HOOOOOO!!!!

Katie woke up singing today :o) It's a good day!
She is all smiles right now. Walking 3-4 times a day, 'running' circles around the nurses station! The docs say she's doing great. They have discontinued a few more of her meds (including her pain med!) and reordered others through her gastric tube instead of her IV. She went to the playroom for the first time and loved it. Do to the immunosuppression, each time she leaves her room, she must wear a mask, but she doesn't seem to mind. The docs have also decided to start tube feedings today. We'll see how her 'new tummy' works!

Thank you all for the cards and letters you send. Katie just loves to get mail! We decorated her room yesterday with those you have sent and it looks great!

The homebound teacher will start Katie's school work today, so she'll have more to keep her busy (and believe me she needs it!).

Katie sends her love to you all and a BIG thank you for all of the thoughts and prayers! They are working!!!!

Laura

Sunday, February 6, 2005 1:53 PM CST

What a wondeful weekend!
Mike, Hayden and Anna made it safely on Saturday. We had a great time together. Katie was so very glad to see them. They return to Atlanta this evening around 5:30pm.

Katie is now walking laps around the nurses station. She has her own cheering section each time she circles :o) She is convinced that if we walk four times a day, she'll get better faster!

He blood counts are higher today, so things are going well. The pain is less and less each day and she is almost totally off the pain meds. Her incision is healing nicely (even without a belly button :o() and Katie is doing most of her oral and topical medicatons herself! Our goal this week is to get back into a daily routine (wake up at 8am, quiet time from 12-2pm, and bedtime at 8pm).

I am learning more about the medication schedule and will begin to administer most of them myself. The docs said that her gut should gradually start to function more over the next 2-4 weeks which will allow for more absorption, more oral medications, and fewer IV meds. Once we feel we can administer most of them orally (or through her gastric tube), we can get rid of the IV in her neck- that will be a BIG day!!!

Hope your weekend was just as wonderful!
Love to you all...
laura

Saturday, February 5, 2005 4:28 PM CST

Our recovery from the transplant surgery began one week ago today! And today Katie walked up and down the halls with me and the IV pole in tow. I had to keep telling her to slow down!

We continue to make marvelous progress. We do need specific prayers for the moment however. It seems that some of the 'left over' donor cells in the donor spleen are attacking Katie's red blood cells (causing her to have a very low blood cell count). They are administering a very potent medication to stop the attack, but if they can't get it stopped, Katie will have to go back to surgery for a spleenectomy :o( Please pray that Katie (and I!) will have the strength and peace to handle whatever comes our way.

Michael, Hayden and Anna made it safely to Miami today! It is so wonderful to see them. Katie is thrilled as well. She is delighted with all of the gifts and goodies that so many of you sent along. And thanks to all who send her cards. She absolutely loves getting mail!!!

As always, I'll keep you posted....
Love you!
Laura

Friday, February 4, 2005 10:35 AM CST

So sorry I didn't send an update yesterday! It was busy :o)

We are finally in our own room! Hurray!!! Room 6063. The doctors and staff are very nice and do a wonderful job to praise and encourage Katie.

Katie continues to do very well. Today we get two more tubes removed and begin to exercise to get her strength back. Her legs are weak and shakey, but her spirit is strong and optimistic :o) Sleep is also on the agenda. Now that we are in a private room, it is much quieter and Katie can rest more. I hope to have her back on a schedule in the next 4 days (she has her days and nights turned around). A routine with consistant sleep patterns helps Katie a bunch!

In case you have also been thinking about the other parents and children that I mentioned in my note on Wednesday, I want you to know they are doing fine. Alana was placed on the transplant list and is much more stable now. The docs are deciding whether she needs to stay in Miami and wait on the transplant (and have her Dad and brother move here as well), or if she is stable enough to go back to Texas and wait. Simon is stable and his Mom, Lisa, is able to take a break and go home this weekend. Please pray for them. One other family I have met is Heidi (Mom) and Max (5 month old son- a twin!). Max has a serious heart condition and is trying to get strong enough to be discharged to go home and grow (for up to 2 years) so that he can tolerate corrective surgery in the future. Please continue to pray for all of them. It is very hard being here for an extended period of time away from family and their other young children. They need strength, wisdom and peace.

On a side note.... a trust fund has been set up for Katie to help cover her transplant expenses and future healthcare. Once we are discharged from the hospital here in Miami, we will have to stay in a hotel (the Transplant House) for 2-3 months. In addition, Katie will have to have two additional surgeries over the next 12-24 months to complete the entire transplant process. There will be numerous trips back and forth to Miami for check-ups and treatments as well as expenses for home care and home-bound education during this time. All money in this fund will go to support any expenses related to the care, housing, travel and education for Katie. If you would like to contribute you may go to any South Trust bank and make a donation to the 'Katie Chester Transplant Fund'. A Childkind Case Manager and Administrator will disperse the funds when receipts are documented and submitted. If you have questions let me know!

Thank you so very much for all that you do to support us!
You are all angels in my book!!!

Laura

Wednesday, February 2, 2005 9:07 PM CST

Today was another great day!

Katie played games with me, giggled, laughed and smiled a whole bunch today! Hurray!!! The pain control is much better so she is almost back to being my Katiebug :o) Katie's blood sugars were a little out of whack though, so we stayed in the step-down unit one more day. We hope to be transferred out to the transplant floor tomorrow (Thursday). I'll let you know our room number as soon as we move! If any of you happen to be down this way in the next couple of months, come see us!

The hospital staff have asked me to talk with other families who have children hospitalized and awaiting transplant. I had quite a therapy group in the lounge for dinner tonight! Please pray for Lisa (Mom) and her son Simon. Simon needs to get stronger before he can survive a transplant for multiple abdominal organs. And pray for Ashley (Mom) and Alana. Alana is an infant and needs a liver transplant very soon. The doctors are having a hard time controlling internal bleeding. They are very worried. Ashley and her husband are in the Army. She is here with Alana and her husband is still in Texas with their 4 year old son. Neither have family nearby to support them. I feel a little guilty- having so many of you to support us. I can't tell you how absolutely, positively, we feel your thoughts and prayers. Please know that it is making a huge difference- Because you have helped us, Katie and I now have the opportunity to return the grace ten-fold to others through witness and sharing! Isn't God good?!!!

We love you one and all!

'See' you tomorrow!
Laura

Tuesday, February 1, 2005 9:23 PM CST

Guess what!?! Guess what!?!

We had another awesome day! So good in fact, that we are being transferred to a regular room on the transplant floor tomorrow! Yahoooooooooo!

The docs came in the room this morning, stood around the foot of Katie's bed and just shook their heads. "This is just amazing! We expected her to do good, because she is so strong. But she is doing better than we could have imagined!" I told them that we weren't surprised, because we have over 1000 people praying for her. One of the doctor's looked at me and said, "Well, that explains it! It's working". Yeah baby!!!!

And keep those prayers coming! The real work begins when we are transferred to the floor. Katie and I will be more responsible for her care and we will begin home schooling and discharge teaching/planning.

It will be a new experience for Katie as the docs begin to test out the "new parts under the hood". So far everything is working just like it should.

Please know that we attribute Katie's wonderful progress to all of your thoughts and prayers. We couldn't do this without you!!!

We also appreciate all of the notes you leave in the guestbook! Katie feels so good knowing that so many of you care.

Blessings to you all!
Laura

Monday, January 31, 2005 7:45 PM CST

Yeah! Three days down!!!
Today was another great day. The doctors continue to be very pleased with Katie's progress. The urinary catheter (foley) was removed today and the pain was not as bad. She did develop a rash and spike a fever this morning, but they believe it is an allergic reaction to one of the many medications she is on. A Dermatologist performed a skin biopsy on the rash to make sure. The nurses started giving her Benadryl every six hours and that has helped a lot.

During the initial recovery (4-8 weeks) the doctors will be doing a scope through her small bowel ostomy (ileostomy) every 3-4 days to look for signs of rejection (reddness/discoloration, swelling/irritaiton, etc.). We experienced the first one today. Katie did very well. There are no nerves connected to the donor organs, so she felt no pain. We even got pictures! Katie thought it was funny that the inside of her new intestines looked like the inside of my mouth :o) Everything looked great! So far, so VERY GOOD!

We got a good sponge bath today and washed her hair so she feels better (and looks better!). She got out of bed and sat up in the chair for about 10 minutes. Every day she does a little bit more.

Thank you all so very much for all of the wondeful messages you have left in the guest book. They are so uplifting. It feels wonderful to have so much love and support. Please know how much we appreciate each and every one of you!!!! You bring lots of sunshine to our days :o)

Bless you all bunches....
Laura

Monday, January 31, 2005 7:45 PM CST

Yeah! Three days down!!!
Today was another great day. The doctors continue to be very pleased with Katie's progress. The urinary catheter (foley) was removed today and the pain was not as bad.

During the initial recovery (4-8 weeks) the doctors will be doing a scope through her small bowel ostomy (ileostomy) every 3-4 days to look for signs of rejection (reddness/discoloration, swelling/irritaiton, etc.). We experienced the first one today. Katie did very well. There are no nerves connected to the donor organs, so she felt no pain. We even got pictures! Katie thought it was funny that the inside of her new intestines looked like the inside of my mouth :o) Everything looked great! So far, so VERY GOOD!

We got a good sponge bath today and washed her hair so she feels better (and looks better!). She got out of bed and sat up in the chair for about 10 minutes. Every day she does a little bit more.

Thank you all so very much for all of the wondeful messages you have left in the guest book. They are so uplifting. It feels wonderful to have so much love and support. Please know how much we appreciate each and every one of you!!!! You bring lots of sunshine to our days :o)

Bless you all bunches....
Laura

Sunday, January 30, 2005 7:40 PM CST

Wow what a wonderful day!

Katie continues to improve. She has all of the staff and physicians in awe!

They removed her arterial line today and because she has made so much progress, they transferred her out of the ICU into a step-down unit (5 days ahead of schedule!). Yahoooo!

I spoke with Dr. Kato (the surgeon) today. He is very pleased and commented on Katie's strength, spirit and health. I asked him if there were any concerns from the surgery or during the recovery and he said 'no'! He expects Katie to continue to do well. He did say however, that it is very routine to 'take two steps forward and one step back'. He emphasized that I should expect a set back or two, but not to be discouraged. It is very normal for this type of transplant.

I want to say a big thank you to Carolyn Johnson (Nurse at Camp Creek Elementary School where Katie attends Kindergarten). Carolyn has a friend whose daughter, Stacey, works here at the hospital. Stacey visited us today and brought a big Mickey Mouse balloon and a bag of goodies. It sure brightened her day Carolyn! Thank you so very much for your thoughtfulness. We love you!

Mrs. Barclay- Katie sends her 'hello' to all of her classmates! She wishes she could be there with you all on Monday. Please tell all of the kids how very much Katie appreciated the gifts you delivered to us last Thursday. Stacey (Carolyn's friend) mailed a postcard from us to you. Send me an email when you get it. You are all in our thoughts :o)

We feel your prayers! Please keep them coming. I'll post an update here every evening when I return from the hospital. Right now I go to see Katie around 8:30am and come home around 8:00pm. I am staying at the Transplant House one block from the hospital. The accomidations are very nice. All the staff at the house have had transplants, so the support is awesome!

I don't have email access yet, but hope to in the next few days.

We love you all!!!
Bless you bunches.

Sunday, January 30, 2005 6:48 AM CST

We got the call at 3:20am on Friday, January 28th, 2005. We arrived at Peachtree-DeKalb airport around 4:30am to meet Angel Flight Pilot, Richard Smith and his wife Sherry. We are so grateful for the Smith's and their generous spirit. They gave of their time, their talents and their resources to get us to Miami safely, on time, on angel's wings.

During the trip, at an altitude around 7,000 feet, we witnessed a glorious sunrise. We were sandwiched between two thick blankets of clouds with a clear view of the horizon. As the sun peeked its head above the lower blanket, streaks of sunlight raced towards us in a rainbow of colors. Katie excitedly pointed towards the brilliant horizon and exclaimed, "Look Mom! There's Heaven! I see the angels!" We said a prayer for a safe landing, a successful surgery, and a smooth recovery.

We landed at 8:15am. We arrived at the hospital a little before 9:00. At 11:30 we began our pre-op work and by 1:30pm we were in the OR holding area.

When it was time... Katie and I hugged each other. She looked at me with her angelic eyes and said, "We need to talk to God, Mom." She and I said a prayer as we usually do- she repeats every phrase after me. As the OR staff (all 8 or 9 of them) patiently waited, surrounding the stretcher, Katie said 'Amen' and then asked to say her own prayer. She began, "Dear God, Please keep me safe. Please help the Doctors do good. And please don't forget about my belly button." I gave her one last kiss. As the OR staff pushed her stretcher down the hall away from me, Katie raised her voice and said, "Remember Mom. I saw heaven. I know my angels are with me."

The surgery began at 4pm. It was done, without complications, before midnight. She was taken to the ICU at 12:20am.

Although the surgeons were unable to create a belly button this time, the surgery was a wonderful success. The donor organs were in excellent condition. The surgery took only 1/2 the time expected. With God's grace and Katie's strength and pure spirit, she remained stable and came through with flying colors.

The physicians, the nurses, and all the other staff have been attentive, supportive, and wonderful. Katie progressed so well on Saturday morning, that they removed the breathing tube at 11:30am (2 days ahead of schedule!). They lightened her sedation around noon. She was opening her eyes and talking to me by 1pm. She was sitting up in a chair by 6pm! The nurse, Judy, said she didn't know of a child who had such strength and could sit up so soon.

For all who read this journal, please know that Katie's spirit and strength come not only from her Heavenly Father, but from you- from all of you who so faithfully believe, pray, and care. We are eternally grateful for you and all that you do to support us. You do make a difference. You touch hearts, strengthen souls and save lives. We pray for you in return and ask God to bless you ten-fold.

Tuesday, January 11, 2005 3:56 PM CST

We are currently awaiting the phone call for transplant. As soon as Katie has come through the surgery we will let you know!

Please keep us in your prayers for safe travel and God's healing touch.

Bless you all!

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