Monday, March 26, 2007 2:00 PM

Friday, March 16, 2007 2:04PM

"Everyone has heard that where a rainbow touches the ground you will find buried treasure. Not many people believe this any more, and science suggests there is no such spot anyway - where a rainbow appears to touch the ground is completely dependent on where you are standing. Leprechauns don't dispute this but say it is missing the point. Which is that in chasing rainbows what matters as much as anything is knowing when you are in the right spot from which to view the rainbow. It depends as much on knowing where you are coming from as where you are going, which requires a particular kind of instinct."

THE LEPRECHAUN COMPANION
- Niall Macnamara

Thursday, March 1, 2007 11:11AM

Monday, February 19, 2007 8:00AM

Today marks 1 1/2 years since Maddie flew to Heaven. Somehow the pain and sadness seem just as intense as it did that day, August 19, 2005. Please pray for our family, for all of the families who lost their precious children way too soon.

Missing Maddie....

Wednesday, February 14, 2007 4:19PM

HAPPY VALENTINE'S DAY MADDIE MAE!!! Blowing kisses upon kisses and sending so many hugs to you in Heaven. We miss you so much.

We Love You....Beyond Measure -

Your Loving Family

This Valentine is not of the ordinary kind,
Its still filled with love...and blessings inside;
But mine has to be sent on the wings of love...
You see its destination is the Heavens above.

Its not being sent to my parents so dear,
For they are still with me each day of the year;
Its being sent to my child...who left earth so soon,
Who's now in the Heavens with the stars and the moon.

The message is the same as your valentine,
"I love you...my sweet precious child of mine;
My love is still deeper than the ocean is blue,
And its sent with hugs and kisses...from me to you."

"I know you are with me each and every day,
You listen as I talk to you...and hear what I say;
For that is one thing that disease cannot do...
...you'll always be apart of me...and me a part of you."

"I know God did not give you the awful disease,
Thank Him for His comfort He gives me...would you please?
I dont know what I would do without His undying love...
Sent to bereaved parents from the Heavens above."

"I know you are in the best of care,
But it's so hard for us left on earth to bear;
Could you put in a request from us left behind...
For God to send the knowledge..so a cure we can find."

"So that no other family has to go through this pain,
Our lives without you will never be the same;
When I get lonely I will look to the sky at night...
And see you shining down your big bright light."

"Happy Valentines day sunshine...I miss you so much,
I know you know how many lives you have touched;
You'll always be mine...I love you with all my heart,
I know we be together again...and then we'll never part."

So you see the meaning is still the same...
The method of delivery is the only change;
Mine must be sent by a little white dove...
On the wings of Love.

Author~ Laura/Heavenly Lights Childrens Memorial

Monday, February 5, 2007 1:02 PM

Friday, January 19, 2007 4:05PM

Friday, January 5, 2007

Friday, December 29, 2006 1:36 EST

Happy New Year! Wishing you and your family Peace and
Love in 2007 -

Maddie's Family

Wednesday, December 27, 2006 3:01 PM CST

Please pray for the Shilling Family as today they said their final good-byes to their most handsome Matthew. Matthew was an amazing, young man - just having celebrated his 18th birthday at the Hunter's Hope Ball back in November. Matthew had a smile that could light up a room and your heart. His Dad, Mom and Sister are all the most beautiful people, our hearts are broken for them. We know all too well the journey they will embark upon today - that journey called grief.

Matthew - Fly to the Heavens! All of your Angelic brothers and sisters await your arrival and what a party there will be in your honor.

Maddie - Always Missing You Baby Girl, Always!

We Love You...Beyond Measure,

Your Loving Family

Wednesday, December 20, 2006 12:05 AM EST

We recently shared this wonderful story with a good friend. She shared it on her granddaughter's Caringbridge site and many people said it truly touched them as well. We feel it tells the story of all of our Brave Little Children that have come into this world, even if just for a "flutter of a butterfly's wings", to teach us all about love, about the true meaning of life. We thought we would share it again at Christmastime, a time when we long to have Maddie with us, but know she is in a much better place.

Maddie - Merry Christmas! We're sending butterfly kisses to your beautiful angelic cheeks. We miss you.

We Love You So Much....Beyond Measure,

Your Loving Family



The Brave Little Soul
By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God.
One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” she asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.” The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all.

Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity." Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you. You will be called, Madison Leigh.” God and the brave little soul shared a smile, and then embraced.

In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through her suffering and God’s strength, she unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

August 19, 2005 – The day Maddie thought the thought...and was healed for all eternity!

Tuesday, December 12, 2006 2:29 PM CST

Friday, December 8, 2006 8:19 AM EST

From The Compassionate Friends, a self-help support organization that offers friendship, understanding, and hope to bereaved parents, grandparents and siblings from the loss of a child:

“Held annually the second Sunday in December, this year December 10, The Compassionate Friends Worldwide Candle Lighting unites family and friends around the globe as they light candles for one hour to honor and remember children who have died at any age from any cause. As candles are lit at 7 p.m. local time, hundreds of thousands of persons commemorate and honor children in a way that transcends all ethnic, cultural, religious, and political boundaries.

Believed to be the largest mass candle lighting on the globe, the Worldwide Candle Lighting creates a virtual 24-hour wave of light as it moves from time zone to time zone. Hundreds of formal candle lighting events are held and thousands of informal candle lightings are conducted in homes as families gather in quiet remembrance of children who have died, but will never be forgotten.

The Worldwide Candle Lighting gives bereaved families everywhere the opportunity to remember their child . . . that their light may always shine!"

To Our Family & Friends,

Please join us on Sunday at 7pm by remembering our precious light, Madison Leigh. Join a local Compassionate Friends event or just light a candle at home. Your small gesture means so much to us.

Maddie,

We know you will be looking down upon us Sunday night and see the candle we will light in honor of you. It will burn brightly for all to see. And it will be a symbol of the love we carry in our hearts for you every moment of every day.

Until We See You Again…All Our Love, Burning Ever So Brightly in Our Hearts -

Your Loving Family

Tuesday, December 5, 2006 1:41 PM CST

Monday, November 27, 2006 8:36 AM EST

The Brave Little Soul
By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” she asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.” The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you. You will be called, Madison Leigh.” God and the brave little soul shared a smile, and then embraced.

In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through her suffering and God’s strength, she unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

August 19, 2005 – The day Maddie thought the thought...and was healed for all eternity!

Wednesday, November 8, 2006 8:43 PM EST

Take a look at the new links below. The first is a link to Kentucky's Newborn Screening Act, inspired by and named partly after our sweet Madison Leigh. This Act is Maddie's lasting Legacy and Gift to the future children of Kentucky. We are so very proud of Maddie for helping to ensure Newborn Screening in our state was expanded.

The second link is a copy of the University of Kentucky Children's Hospital Newsletter. The article was inspired by Maddie and the work her Daddy does everyday to raise money for children's hospitals across the country. Daddy got this job just months after Maddie went to Heaven...surely there was an Angel whose hands were involved! Don't you just love the picture of Taylor with his Sissy? Always her protector!

We Miss You Maddie! Keep pushing us all to do things that honor your life and legacy.

We Love You Beyond Measure,

Your Loving Family

Monday, October 16, 2006 4:35 PM CDT

Maddie's Mom has decided to create her own website so this will most probably be one of the last updates you will see here for awhile. Please continue to stop by and sign the guestbook. We come here every morning to be close to Maddie, to reflect on her amazing life and legacy. Your guestbook entries that honor Maddie mean so very much to us. We will continue to update the pictures on here, giving you a glimpse back on our Maddie Mae's most amazing life.

We love you Maddie.....thanks for continuing to bless us with your beauty and spirit,

Your Loving Family

Friday, September 15, 2006 1:23 PM CDT

Well, my mom finally finished her book, and submitted it to the pubishing company. I hope that it will be out close to christmas time.

Here is the jacket summation of her book

Enrich and bless your life with this four year journey of an amazing little girl who turns sadness into joy and losses into gifts. She was born a normal little girl, displaying all the wonder for life. Encumbered with a horrific and painful disease, Krabbe, that did not surface until her tenth month; she accomplished transformations in the lives of many and displayed a courage and grace that impacted this world in a unique and suprising manner. She will remove for you the devestaion of being "terminally ill", and she will enlighten you with the power of love. The discovery of miracles that are surronded by what appears to be tragedy, and the appreciation of the quality of a life and not it's longevity will amaze you. Maddie will empower you to embrace a life that appears hopeless and let it raise you to a level of joy most people never experience. All of the proceeds go to the Hospice of the Bluegrass. When the book is published, it will be on over 23,000 different websites including Amazon.com. The title of the book is "When God Sends An Angel"
We are hoping for the arrival of the book around Christmas time.
We are back into the school year. School has been crazy!!!! Taylor is doing great in school, although,he is a little upset that the girls are liking another schoolmate this year. He tells me that his friend said that Taylor has lost his touch. That is really scarry!!! What kind of touch??? He is going on 8. He has only had one love letter sent home. He tells me that only one girl likes him. He cracks me up!!!
Love,
Laura (Angel Maddie's mommy and Taylor's too)

Monday, August 14, 2006 1:42 PM CDT

Well, it is five days until my baby flew back home. I cannot believe that a year has gone by. In some ways it has been forever, and in others it has flown. It does not get any easier. Whom ever started the saying that time heals all wounds, is just plain dumb. You have to keep on moving, so I guess beacause your life is changing that it becomes easier. I will never heal the place in my heart that longs for Maddie to be with me. I try and do things in her honor. I will never forget about her, or get over her. She was my life and still is. So many people think that you can put a time limit on grief. There is not time limit!!! I still sleep with the blanket that covered her bare body the night that she flew to Heaven. I remeber taking her shirt off of her because I spilled her feeding everywhere. When I realized that her O2 level was so low, I called 911. I never did have a chance to dress her. She left in the abulance with her very soft Lilac blanet covering her body.I have never washed that blanket to this day. I feel a closeness to Maddie when I sleep with it. I know it was the last thing that touched her. A good friend had bought that for Maddie on her fourth birthday. I will never forget that night. I know that God was ready for Maddie to come home. I am not sure why at that particular night??? The plan is still unfolding. My mom has written a novel about Maddie. I have typed the whole thing for her. It is a novel of hope and inspiration. It is a religious book that really makes you truly understand that there is a plan for everyone. We are not in control of much of anything. I am very proud of her for writing this book in Maddie's honor. It will be published very soon. I have finished the manuscript. It is the revisions that need to be made. I just continue to share Maddie with everyone. I dontated her kidcart to a family in need. I also donated her old Peg Perego stroller. I have also donated some of Maddie's clothes to another family in need. I want to share her blessings with eveyone. I start back shool on the 23rd. I am excited!!! I cannot wait to finish school. I cannot wait to be a nurse. She showed me how passionate I could be about becoming a nurse. She also gave me the confidence that I needed. All of the proceeds from Maddie's book will go to Hospice. I truly hope one day that they can find the funds to hire a peds doc. It was such a hassle to take Maddie into the doctor's office. I always worried about the germs, and the preparation itself was difficult. She had alot of equipment. I always told Steph that they so badly needed a peds doc that would come to the patients homes. Typically, a shot of Rocefin,we would need to go in to the doc's office for that. Maybe one day they will have enough funding to have a pediatric doctor available at all times. It would make life so much more manageable. I just think that we could of never made it without our incredible Hospice team. Maddie, I Love You!!!! I miss you everyday.
Love,
Mommy

Sunday, July 16, 2006 2:07 PM CDT

Happy Birthday my sweet angel!!!! Mommy misses you so much. I hoped you enjoyed the wonderful celebration that we had for you. It was kind of miracle that I made it home after picking up all of your birthday balloons. We had many friends and family that love and miss you so much. We released the 18 balloons that were tied to the card that was a picture of you. I hope you see them from the Heavens. We all watched them go so high up that I think a plane crossed between them. I love you little doll. I wish so badly that you were here to celebrate your 5th b-day. I know that God's plan was "his plan", and I cannot question why??? I have to embrace all of the memories and look forward to the day that we will meet again. I Love You!!! You have many wonderful bears, flowers and pictures of you just sitting on your gorgeous headstone. I will be praying for Trinity's family. Trinity is with you Maddie in Heaven. Have fun celebrating with all of your Heavenly friends. There is no better place to celebrate. Sending you lots of kisses to Heaven. I hope you receive your balloons that were sent to you. I know that you were watching from up above. I could not find your birthay dog that we used every month on the 16th. Taylor thought is was in your closet, but we searched the whole house. We bought 2 different birthday dogs and we all stood and a circle and took time to send our birthday prayers to you.
Love,
Mommy

Friday, July 14, 2006 11:43 AM CDT

Well, its two days before my little angel's 5th birthday. I cannot believe that she is turnig five. Maddie we have family coming into town, and even though you are not here with us, we we are thinking of you. We are sending you 18 balloons to Heaven. If they do not reach you, we have attached your picture with a note on the back that says, "we are sending these balloons to Heaven for our baby's 5th birthday. If you find them, please sign her guestbook. Her website is www.caringbridge.org/kt/maddieheflin
I thought of this idea from a girl on the Today show who did an experiment with some balloons. She sent them up with a letter attached to it. A woman 900 miles away found them in her yard. I already had planned on letting balloons off for Maddie, and I thought this was a great idea. My dad is in town for her B-Day celebration. We have invited lots of friends and family to celebrate at the cemetary. I miss Maddie so much and it is so hard to believe that a year has passed since her Gattitown birthay party. I know that she's in the best place for a birthday party (heaven), but I kind of want to be selfish and have her with me. I am working so hard to get this degree. It is all in the name of Maddie. She is the force that is pushing me so hard. I have now completed three classes towards my nursing degree. I have remained to keep my 4.0 GPA, which is a miracle. I was never a good student. I talked with my friend Karin the other day . She said, "Maddie is definetly the force behind your grades." She new that school and myself never mixed. I want to help other children so badly. She has taught me so many lessons about Life. Maddie,"I Love You" and I am sending you Birthday kisses all the way to Heaven.
Love,
Mommy

Tuesday, July 4, 2006 9:15 AM CDT

I cannot beieve that its the fourth. Last year we went to our usual spot which was located on top of a parking garage and downtown. The firework show was incredible and away from all of the crowds. We took Maddie and Taylor there last year. We met up with my old neighbors Risa and Carla and their kids. It is so hard to believe that it has been a year. Julie Lively was in town and called us up. She was Maddie's massage therapist. She had moved to SanDiego right before Maddie passed away. She was her massage therapist for many years. She was wonderful with Maddie and really was in touch with her. I can see why. She is an incredible belly dancer. Mom and I got to see her dance last Friday night at Nema's. Nema's is a Persian restaurant in Frankfort, Kentucky. Julie had always wanted us to come and see her dance, but something always came up and we would miss out. This time we made sure that we were there!!! I have to say that I was so impressed with her artistic ability. She is truly talented. I can now see how she was so good with massage. I put new pictures on Maddie's website. Julie, I am sorry but there is a picture of you dancing. I couldn't help it. You were such an inspiartion and joy to have in Maddie's life. I wanted to share the other part of your life. I hope your not mad. Now maybe you will sign her guestbook. I got some new pics of Maddie's headstone with all the beautiful flowers. I also got Taylor and his friend Brody in one of the pictures. Her flowers are huge and gorgeous!!!!

Love,
Laura

Wednesday, June 21, 2006 1:54 PM CDT

I finally finished Chemistry. I got an "A". Taylor is so funny about my grades. He always wants to know if I made the A that I was striving for so desperately. I guess now I am looking into the second degree progam at U.K. I am also researching EKU. They have a wonderful program. It is so hard to know which way to go. I have a little over two weeks left in my Psychology class. I showed them Maddie's video. we were on the topic of genetic diseases. After the class, my teacher wiped her tears and said, "I think that is all for today". We took a break and discussed her syptoms and signs of the disease, and then she released us. People in the class were so shocked at how fast it all happened. One part of the film she cracking up at her brother and the next she has a feeding tube. It was like a whirlwind. I met this family that I donated Maddie's kidcart to last week. Their son has not been diagnosed with anything yet. Pam the lady from Hamiliton's has already adjusted the kidcart to fit his needs. He just turned one. He is adorable. I feel so bad for the family because I know how hard it is. I met with Donna and Steph at the cemetary. We also had lunch. It had been since Maddie's funeral since I had seen them. They loved her headstone. I cannot believe that her birthday is right around the corner. It feels like just yesterday we were getting ready for her big party. It seems as it gets closer, I can really feel it emotionally. It has been a tough month. Taylor announced that he wants me to marry a man with a child maybe 8-10 years old. He does not want one older then 11. I said okay I get right on that. The only thing I see these days are many text books. I don't think that this wish will come true. Kids are so funny. Gotta go study for my next test.
Love,
Maddie's mommy

Saturday, June 10, 2006 11:57 AM CDT

Well, I finally finished that darn ACT test. It was a nightmare!!!! I am sure that my score will reflect that. I will shoot for plan B. I am looking into attending the University of Kentucky second degree program. I already have a four year degree, therfore, I will not need to take any type of ACT or NLN test. The thing that was amazing about today was that the girl who sat in front of me had a t-Shirt with the lyrics of Blackbird on it. I knew that Maddie was there with me. As I read her shirt, all I could think about was the song, and what it meant to me. we played that song at Maddie's funeral. I hope that she helped me choose some of the correct answers. I did feel her presence. What are the chances that the girl in front of me would have the lyrics to Maddie's song just staring me in the face. It was an amazing experience. I am not going to worry about the results of the darn meaningless test and just move forward. My teacher seems to think that I put too much pressure on myself. I know this is true, but it is all for a reason. I think he realized that after my total melt down. I am kind of embarrased, but oh well!!!!!!! Thanks Maddie for giving me the strenth to get through these times. I could not do it without you.

Love,
Mommy

Thursday, May 25, 2006 2:07 PM CDT

Wow!!! Summer has begun. Taylor is out of school and already bored. It is amazing that when I was growing up, I found things that entertained me. Kids this age and time are wanting to be entertained 24-7. It is not enough that he has a game cube, gameboy, and many other gadgets. He is always seeking a playmate. I am thinking about finding a camp through the YMCA. My mom has been watching him for me. This summer school semester is very hard. The chemistry alone is about to kill me. I thought Anatomy and Physiology was hard. I know one day I will look back and think that it was not so hard. I am not thinking that now. I have 2 chemistry tutors ,and I am tutored for the ACT. I cannot believe that I have to take it over. I know my high school grade was probably terrible, so I am retaking it. I hope to be admitted to Midway in the Fall. I will start with my Nursing classes. They did give me a partial scholarship, but the tuition is outrageous. I have to sit back at times and take a deep breath. i always picture Maddie when I think that I can no longer do this. She is my driving force behind this degree. If she can hang in there and thrive, then I have to do the same. I will be finished with summer school on July 9th. July 16th is Maddie's birthday, and we are doing something special at the cemetary. I hope they do not ban us before then. I will have lots of balloons surronding her headstone. I am going to celebrate her life. I am not too worried about the cemetary rules!!!!! I will update again as soon as my school session is over.

Love,
Laura (Maddie's mommy)

Friday, May 5, 2006 12:35 AM CDT

It is hard to believe how fast time has flown by lately. I ended my first semester. I start summer school in 4 days. Not much of a break, but I have gotten kind of use to the pressure. I think it helps me keep going. I removed Maddie's dwarf tree from the cemetary. It will be residing with me. The man that runs the cemetary decided that there is no such thing as Dwarf trees. I guess he is now an authority on Horticulture. He gave us precise dimesions of how we could plant her flowers. It really has gotten a little ridiculous. Taylor is doing great in his Spring soccer. He really has gotten so much better. I think the indoor was not to his liking. I miss my Maddie Mae so much. I went to Homegoods in search of a present for my Niece's birthday. I love the kid section in there. Of course, they had a precios sign that had the name Maddie on it. I was so tempted to buy it. I have kept her room in the exact way that it was decorated for her. My mom's homeschool child's sister was just diagnosed with a Metabolic disease. It has taken the family over a year to come up with a diagnosis. I met the woman yesterday. Mackenzie is the little girl. She is precious!!! She is four years old. I brought the family a bag of Maddie's clothes. They got on with Hospice. They have Steph as their nurse. I told the mother that Stephanie is the best nurse ,and to request her. I even found out that Mackenzie has Maddie's old preschool teacher as well. It is a small town. I let them borrow the pulse OX machine that Maddie used. It actually belonged to one of my friends. She had no problem lending it back out to this family. I just feel for them. I know the frustration of wanting the diagnosis. I know all the heartache of watching your child go backwards. My heart and prayers go out to them.

Love,
Laura Maddie's mommy

Saturday, April 8, 2006 5:27 PM CDT

It is hard to believe that Easter is almost here. Last year we got Maddie this singing Easter bunny. It sang here comes Petter Cotton Tail. It's hard to think about an Easter without her. We are buying another Dwarf spruce to plant next to her headstone. I was waiting for the ground to thaw out ,before I planted them. Taylor starts his first outdoor game this Sunday. He is excited about outdoor Soccer. I am almost wrapping up my Semester at school. This Anatomy and Physiology class has been very difficult. I have a 96% in there. I do study my butt off. I want to know as much as possible. I want to be prepared for the day that I become a nurse. I am nervous about getting into the program. They typically go on your grade point average and the NLN test scores. That test is similar to an ACT test, but it is more geared for the Nursing student. I do drive my teacher crazy. I cant help it!!!! I ask way too many questions. I know Maddie would be so proud of her Mommy. I want to help other babies so badly. I miss her so much. Some days, when I wake, I am not sure how I get to the next day. I have okay days and bad days. I feel like part of me is never whole. I am always missing a piece of me. She has taken that piece of me to Heaven. When I go out to the cemetary, and everyone that see's her headstone, always comments on it's beauty. It just stands out, but so did she!!!!!!

Love,
Laura (Angel Maddie's mommy)

Monday, March 20, 2006 10:41 AM CST

I just got back from the cemetary, and it is really blooming. I can not wait to plant Maddie's tree this spring. I know today is the first day of Spring , but it sure does not feel like it. I am afraid of planting her flowers around her headstone until after derby day. I guess that is the rule of thumb for Kentucky. Taylor and I went to Regan's competition on Sat. She got second place, but announced that she liked the first place medal better. She wanted to be a first place winner not a second. She is so funny. Taylor had so much fun with her. They are so close!!!!! Regan always talks about Maddie. She has a picture of her in her room and she always kisses it. She is so sweet and dear. We all miss Maddie so much. I am glad that they finally quit messing with her flower box. I can not wait for Spring to finally get here. The ducks at the pond at the cemetary will hopefully migrate to Maddie's pond. There are two geese that already reside there. I am hoping for the others to follow. Taylor loves to feed the ducks. Spring break for Taylor is coming up rather soon. I have already had mine. He will be in Atlanta for part of it. Spring outdoor soccer has begun. He ended his indoor. I am hoping that the sun does not shine too hard to where his eyes begin to water. I guess we will be getting him some sunglasses. Jason said that his last game went great. I asked him what changed. He was playing a game with the other boys on the team. I think that really motivatd him. I ordered his uniform. He is number 4 again. He will always be four in remembrance of his little sis.

Love,
Laura (Maddie's mommy)

Wednesday, February 22, 2006 2:01 PM CST

I updated several weeks ago but for some reason it did not take. I guess I forgot to finish reviwing it and did not add it. My last journal entry was one day before Maddie's 6 month mark since she left us. On the the 19th of each month it is just so hard. I can not believe that it has been 6 months since I let my baby go. I was going through some drawers in my living room about a week ago and ran across Maddie's hairbrush. I felt so saddened. My heart dropped as I put the brush up to my nose and could still smell her conditioner on the brush. Time has passed but some days are okay and other times it just hurts so bad. I have to say I have been real emotional lately. I feel bad that I tend to take it out on the one's that I love. I knew the 19th would be bad. I felt it coming. My boyfriend, Jim, came over and burned some of the videos that I have of Maddie onto a DVD. Watching the videos felt like the time had stood still. The pain was so fresh. Later that day, we went to the cemetary. I take it day by day. School has been crazy. I have a springbreak coming up and I am looking forward to it. Taylor is going to Atlanta for part of his Springbreak. Taylor is still in indoor soccer. He will do outdoor in the Spring. I still feel that we have not found a sport that he really loves. When we go to the cemetary, he loves to run around the lake. He can run fast. I can not figure out why he does not run that fast in soccer. He blams the lighting for not running. When he gets out on the field he rubs his eyes. At first, it was the wind hitting his eyes. Then he went rollerskating with a friend, and I asked him, How were your eyes? He forgot I guess what he had told me. He said fine. I asked him if skating fast around the rink didnt make them water. He said it is not the wind. The lighting makes his eyes water. He said," yeah mom and the rink is dark". I guess it is the lighting in the indoor field that makes him drag his body up and down the field. He does want to do basketball but the lighting concerns me. He may be light sensitive. He likes the whole social aspect of it. When he played T-Ball he loved the popcicles that he got at the park. He didnt so much care for the game, but it was the treets afterwards and the socializing. He is popular and I just want him to find a sport, so he does not go down any wrong path. Peer pressure starts with kids so soon. I know this summer we will live at the pool. He loved that last Summer. He loves swimming and jumping off the diving board.

Love,
Laura (Angel Maddie and Taylor's mommy)

Thursday, February 2, 2006 3:05 PM CST

I have to say it has been a while since I last updated. School has had me crazy busy. I never thought it would be this tough to get back into the swing of things. I have never studied so hard in my life. I am taking Anatomy and Physiology I. it is condiderd to be the weed out class. It is supposed to be one of the hardest nursing classes. I believe it!!!! I got my first test score back and was suprised. I made a 91%. There were only 4 a's in the class. I do say that It was all Maddie. I did it for her. She is the one that gave the confidence that I needed to go back to school to begin with. I would of never thought that I could be a nurse if it had not been for her. It is so amazing how God works his miracles. I have a passion for nursing and can't wait until I am finished. I would love to work with kids. I just back from the cemetery. The people at the cemetary had taken all of the stuff out of her box again. I just finished going several rounds with the guy in charge. It seems so disrespectful of them. They have all these stupid rules, but do not inforce them throughout the whole cemetary. It seems like the really like her section. I hunted down the things and retrieved them this time. Right after Christams someone stole her Angels off her headstone. We never did find them. Taylor is doing great in school. I just did my volunteer work in his class today. The kids in his class are so loving. They can be a little out of control. Taylor is one of the best behaved in his class. I am not saying that because he is my son. He is so quiet and well behaved. I am so proud of him!!!!!! Gagee has been teaching away. She has been real busy with her school. I will try and put some new pictures on her site soon.

Love,
Laura (Maddie's mommy)

Wednesday, January 18, 2006 11:33 AM CST

A letter from Grandma (Gagee)

To my precious angel Maddie. It has been nearly five months since you flew high with our hearts, and I now know that the pain of losing you will never lessen, but the love and joy that you gave us has become a metamorophsis of that pain just like the caterpillar into your signature butterfly. I look back over your four short years and wonder how can I possibly follow in your footsteps. In the midst of what appeared to be such sadness, you radiated true beauty and love and the real meaning of life without any of the possessions or abilities that imprison us. You had nothing or so it appeared, but you gave everything and this world took on a new appearence. I thank God everday for honoring us with you and in his wisdom knowing Laura would manifest a miracle of her own by creating such a special life for Maddie that she would choose to live much longer than any doctors predicted she could. God gave us many special gifts that far surpassed any earthly experiences. The night I leaned over you and said, "Maddie ( blink of my eyes) I (Another blink) love (another blink ) you." (blink ) You blinked back three times. That was a moment never to be forgotten, and it opened the door of communication that grew and grew and allowed us to know that our hearts were beating in unison. We did know and love each other. The last time that your precious blinks stopped our hearts was the night that they pronounced you deceased and after that pronouncement by God's great glory you blinked those beautiful big eyes three times which let us know death had not separated us. Maddie I am glad that I do not have too many years left to try and be reflective of all I learned from you. I can not wait to meet at the Golden Gates. I love you more because of the real defintion of Love that I learned from you.
Your adoring Gagee.

Make sure and click on tho photo album, because the pictures of her beautiful headstone are on there.

Tuesday, December 27, 2005 12:47 AM CST

Wow I am so thankful that Christmas is over. I am really thankful that Maddie got her headstone 2 days before Christmas. This year was like a total blurr. I went through the motions of celebrating it for Taylor, but I felt so lost without Maddie by my side. I used to take tons of pictures, but this year I do not think that I took even one. I couldn't get into the holiday spirit without her. I know everyone says it will become not easier just different. Taylor did have a huge Christmas. Santa visited him at his Dad's home. I emailed Santa and told him to skip this house and go to his Dad's place. Next year I will have Taylor on Christmas eve and Santa will come here. I hope he will still believe by that time. Maddie's headtone is gorgeous. It is alot taller than I ever imagined. The stained glass piece is beautiful and is so reminisent of my Maddie. We are waiting until Spring and we will plant two Spruce trees next to her headstone. We were so shocked that they actually had it finished for Christmas. What a miracle. I was driving by constantly awaiting it's arrival. Our trip to Atlanta was nice. It was great to have all the kids together. My cousin Jeff could not come with his twins. They were in the process of adopting a little boy. They finally got him several days ago. I am so excited for them. We are planning a trip to Charolette, Nc. to see them soon. I will have to plan everything around my school schedule. While we were packing the car to head to Atlanta, I opened the hamsters cage to give him a quick pat. I noticed that when I opened his cage that he did not pop his head up. Oh No!!!!!! I screamed for my sister to come in. Buttercup had died. I knew that Taylor was going to flip out. We had Buttercup for almost three years. Well, we actually got him on Maddie's 2nd birthday. I am not sure how old he really was. I know that he had survived several suicide jumps off Maddie's dresser and made it past 2 cats and a dog. They loved when he got out of his cage. Maddie's nurse had also dropped him at one time. Believe me he had survived lots of falls, and always managed to hang on. Before we left for Atlanta, we had a memorial service in the front yard. We buried him. Taylor wrote a little goodbye note to him. That really started our trip off to a great start. Taylor cried for a while, then he settled. I explained that Hamsters don't typically live that long. Buttercup was special ,and he will be missed. We put this angel over where we buried him so that no neighborhood dogs would not dig him up. The angel I call the "Maddie angel". It looks like her. I will try and get some new pictures of her headstone on her site soon.

Love,
Laura (Angel Maddie's mommy)

Wednesday, December 7, 2005 4:42 PM CST

I cannot believe that Christmas is just around the corner. We are going to Atlanta for my family Christmas party in mid December. I have not seen some of my cousins and other family members that typically come to the annual party for awhile. The last time we all went to the party Maddie was only 5mo. old. After her disease progressed we never made another trip there for Christmas. It was too hard to travel, and I was worried that she may get ill. Taylor is so excited to see his whole family on my side. They will all be there. It will be total chaos, but fun. I decorated Maddie's tree at the cemetery with red bows and put a present at the foot of the tree. The present is actually an ornament that opens. It is like a mini snow globe. I asked Taylor what he thought we should put in it??? He replied her hair. Back in July Maddie was given a clown for her birthday. The clowns hat would spin around. Taylor got a little too close to Maddie with the clown and spun her hair up into the clowns hat. It ripped a huge chunk of her hair right out of her head. It took a while to figure out why she was bald in one spot. He then realized that the clown had Maddie's hair attached to it's hat. He never got over that. He felt so bad for hurting her. He made me hide the clown. He called it the evil clown. When we were at the cemetery, he wanted to know if the clown had any of her hair still attached to it's hat. I told him no. I put the clown away. I did have some hair in her baby book from a previous hair cut that had gone bad. Together the next day we brought her hair out to the cemetery to put inside her snow globe present. He broke my heart. It is so hard being without her and shopping for christmas presents. I would set out and be on a mission to find the best presents for her. I just miss her so much. she has taught me so many life lessons. She has taught me how to fight and be a fighter for what is right. I used to be so quiet and kept to myself for the most part. No more I so what is on my mind when it's on my mind. I have been studying for my Anatomy class. It starts in Jan. Before Maddie, I was intimidated more or less by professors and would never ask too many questions. Not any more!!!! I will probably drive my teacher nuts. I expect nothing less than perfection. She has taught me that you really have to fight to survive in this life. You cannot sit back and let things just happen. I had to fight for Maddie's healthcare to the very end. I fought every doctor about what medicine she should be on. I fought them about everything. You have to be your own and your childs advocate. My sister's boyfriend went in today for his feeding tube placement. They are putting the tube in through his intestines. The chemo makes him too sick to go in through his stomach. They are doing the sugery and releasing him several hours later. I could not believe that they would send him on his way after having the surgery. Maddie had her's placed and she was in the PICU for a day for observation. I told Valory that she can not just assume because Tom has good doctors that they will always look out for his best intersts. Believe me I have seen some doctors make big mistakes!!!!!!! He will have a nurse come over in the morning to show him how to use his feeding tube. I guess as far as pain management for the night, he's on his own. It makes me so mad!!!!! I went to cincinatti with my mom and took some of Maddie's feeding bags and supplies that she never used. I knew for some reason that I needed to keep all of her supplies. I just never imagined that it would be for Tom.

Love,
Laura (angel maddie's mommy)

Sunday, November 27, 2005 5:41 PM CST

Well I celebrated Thansgiving with my sis, mom, sister's boyfriend and his mom and dad. We had a huge 21 lb turkey and all the dishes that traditonally are served with the turkey. The food was great and meeting of Tom's family was very nice. We decided the day after to go to the movies. Tom stayed behind. He is having so much trouble during his chemo and radiation process. The eating process is horrible for him. He had a smoothie during our huge meal. I felt so bad for him. I really didn't eat that much. I just kind of sat and starred at everyone. I felt like this is not really happening to me. I never imagined how hard it could be during the grief process. I miss her so much. As I watched Tom struggle with every sip of his Smoothie, I suddenly felt so guilty for feeling so sorry for myself. Here he is fighting for his life and I am feeling so sorry for myself. I felt bad that there was nothing that I could do to help him. The medicine he takes makes everything taste like metal or aluminum. This is a man who loved food and could describe each bite of whatever down to the last bite. Now he can not eat enything. Back to the movies. We went to the movies the day after Thanksgiving. We pulled up into the Newport parking garage. I didn't even realize that was where the movie was playing. The Newport Aquarium is where we took Maddie,Taylor and Regan along with one of my mom's former students to visit 2 weeks before Maddie passed away. As we parked and started walking up to the door, I could feel the tears starting. I stood there and said," we cant go in". My sister did not know that we had taken the kids there right before Maddie passed away. She didn't understand, and said why???? I turned and looked at the boy next to me that was sitting in a kidcart that looked just like Maddie's. I lost it!!!! I had a major melt down right in the middle of the mall area. She understood and we all walked back to the car. I decided since we are already, here we should go ahead and see the movie. I had my melt down and hopefully, I would be okay. This Thanksgiving was so hard. So many emotions at hand were tossed around between mine,moms and my sisters. She is totally taking care of Tom. I know she's stressed out. I did it for years. Tom's friends have started a fundraiser to try and raise money for his medical bills. He has some wonderful friends. I swear when you think life couldn't get any worse, you always get thrown another curve ball. I hope to scan last years christmas picture onto the website. My scanner program is not reading the program correctly, so here's hoping. I hate computers. I learned how to scan ,and now the program screws up on me. It is always something!!!!!!!! I got Taylor back today. I missed him so much. I think having him away added to the depression. I couldn't wait to get my hands on him. My friend Kenny is going to take pictures of Taylor and Regan. She was at Sutton's birthday party and said that she's free to do pictures. She will set something up at her church and let all of her friends come to her church to have pictures made. She said they have lighting and a backdrop area.
Love,
Laura (Angel Maddie's mommy)

Tuesday, November 22, 2005 5:52 PM CST

It is hard to believe that Thanksgiving is almost here, but Maddie is not. I really wanted this year to do absolutely nothing!!!!! My sister's boyfriend has cancer, so we are drving to Cincinnatti to be supportive of him. He is only 40 and has a rare form of throat cancer. He is having trouble with the chemo and radiation, so we will be celebrating with my mom,sis and his family. I miss Maddie so much and have a hard time being jolly as it comes closer to the holiday season. I know she's in a much better place, but it does not ease the pain. I always planned ahead each year for pictures. My sister always called me neurotic about pictures, but I knew that my time with Maddie was limited and we had to treasure each and every picture that was taken. I think this year we are having Taylor and Regan take pictures with Santa. Valory now understands with Maddie not here ,why I was crazed during the holiday season. I had the picture time and place scheduled months in advance along with the outfits. She is more a fly by the seat of her pants gal. She does not understand planning in advance. It was a miracle that she and Regan ever made it in any of the pictures. Taylor will be traveling with his dad to Atlanta for the holidays. I talked with the man from Rock of Ages today and he thinks that the headstone will be finished by christmas. We will be praying for that.

Love,
Laura(angel Maddie's mommy)

Sunday, November 20, 2005 3:05 PM CST

It was yesterday that I received the call from the man that owns the stainglass company out of Louisville, Maddie's stainglass was completed. I was amazed that it was finally done. We had waited so long in anticipation. I told him that I would be there on Sat. the 19th which was the exact day of Maddie's passing. i have a hard time each month on the 19th, but this month I kind of had something to look forward too. I took Taylor Sat. morning to his soccer game at 7:45AM and then left for Louisville. My mom and I could not wait to see Maddie's stainglass. We knew that it was going to be beautiful just as she was. We pulled up into the parking lot. I saw it sitting in the window. I said to my mom, there it is. It was radiant. The detail and the butterflies were glowing. I will call the man from Rock of Ages and find out when the granite will be ready. I hope just in time for Christmas!!!!! I told the man at the stainglass store that everyone would see Maddie's gorgeous headstone and be so jealous. I had no idea that ever existed. I ran across the stainglass piece when I went to pick out her headstone and fell in love with it. There are only two other stain glass pieces in the whole cemetery. Take a peek at the picture that I took of the stainglass. The stainglass is being enclosed in a glass case so I only had a day to make it there to take a picture. I will take pictures when her headstone is completed, because I just think it will just be a knockout.
Love,
Laura

Friday, November 11, 2005 9:28 PM CST

Another Annoying Day!!!!!
I was driving out to the cemetery just like I do every day and noticed that Maddie's cross and angel were missing. I drove back out to the barn and it was locked. I couldn't find any staff because it was time to close which is by the way 5:00 pm. That seems a little too early to me. I drove and drove with Taylor screaming in the backseat I am going to be late to soccer. I am so annoyed that everyone else can get by with mylar balloons flying in the breezes and fake flowers planted into the ground, but they will not leave my cross alone. I took it away after the first time, but then I noticed that everyone else was breaking the cemetery rules, so why did it matter. It was not in the way of mowing because they have already poured her footer. It seems so disrespectful. I guess tomororrow I will have a little sit down with the guy who runs the cemetery and figure some things out. My god its not like it is tacky or something. I can understand that. Their is a little boy that is buried right behind Maddie. They took his Angel and stone that had an engraved poem on it. I think that is so cruel. I think that I will go retrieve his also. I am sure his parents dont know the protocol yet. I am sure they will see me coming and think oh lord here comes that crazy woman looking for her cross. Taylor starts indoor soccer tomorrow. His first game is at 8:45. Hes real excited about playing on this team. It has alot of his old teamates on it, along with several girl players. We should have Maddie's headstone in by Christmas. Thank the lord. No more chasing down angels and crosses. I put some old pictures of Maddie and Taylor on the website in their younger years.
Love,
Laura (Angel Maddie's mommy)

Wednesday, November 2, 2005 8:46 AM CST

I cannot believe that it has been over two months since we last held Maddie touched her and ran our hands through that long beautiful hair. I was waiting to update in anticipation of having a picture of her stainglass that will be mounted into her headstone, but no such luck. I drove to Louisville, ky 3 weeks ago and the man said that it would be ready by this or actually last friday. I called yesterday and It will not be ready for another 3 weeks. I have a hard time when I am told one thing and it never seems to be that timeline. Why not just say that it will be 4-6 weeks, so the family is not sitting around anticipating the stain glass. I know to them its glass, but to me it is so much more than just a piece of glass. It will be all the ways that we can keep in touch with our little angel. The butterflies and the rainbow are how her room is decorated. I found the colorful butterflies that were once a mobile and separated them and attached them to her wall like their flying up over a rainbow. Everything in the stain glass is symbolic and I was looking forward to taking pictures of it before they seal it in the glass case. The man has been real nice and designed a gorgeous stainglass piece for Maddie. I will settle down and patiently wait. I did get a new computer. Thank god!!!!! My new email is maddiemae@insightbb.com I love it, although there is so much to learn. I have a scanner and I can scan ,but not scan and email yet. It will take time, but I will learn. I start school Jan. 8th I am excited about that. I will change out the pictures when I learn what in the heck I am doing. The last time I tried to change them out I ended up with a picture of my uncles house on the fromt of Maddie's webpage. That was real attractive. Taylor's soccer team was undefeated this season. Taylor scored two goals for the season. I am so proud of him. He is growing into such the little man. I love being at school with him on thursdays. He knows that when my school starts I cant volunteer, but it has been so much fun. Hes got a good group of kidos in his class. They can be a little out of control at times but good. I will update soon!!!!
Love,
Laura(Angel Maddie's mommy)

Tuesday, October 11, 2005 12:56 AM CDT

It is hard to imagine that it has almost two months since we said goodbye to our little Maddie Mae. I miss her so much!!!! I went last week and picked out her head stone. It is going to be a light rose color with a stain glass in the middle of the head stone that has a rainbow with butterflies around it. Originally when we met with the man from Rock Of Ages we had maped out a sun with butterflies around the sun. When I went to Atlanta last weekend for my cousins baby's baptism, Taylor drew a big rainbow on a piece of paper in church and it dawned on me that she shouid have a rainbow not a sun. I am traveling to Louisville, ky to meet with the stain glass guy to work out all the different variations of colors and textures of stain glass. During the process of being so pickey about how her head stone had to look, I ended up talking to the man from the Rock of Ages and he himself has a child with a genetic disease. its not life threatening but he's handicapped. I knew there was something sincere and special about him. It is so amazing how people with special needs children can just sense things in other people. We had a wonderful trip to Atlanta. I got to see my family and taylor spent lots of quality time with them as well. I went to my family physician doctor last week and he put me on something for nerves. I didnt want to be on an anti depressant but somethijg to level me out. Every little noise is annoying. I also have been having horrible nightmares. I guess this all normal. I have been talking with gagee alot, so we have been trying to get by together if you can call it that. It is the blind leading the blind. Taylor has excelled in soccer and will start indoor soccer in the winter. He breaks my heart wanting to listen to all of Maddies music that was played at her funeral. His favorite song is "The Dance". He plays is over and over and over until I think I am going to loose it. It is so dear but tears me up. He misses his sissy so much. His main concern is when is that headstone going to be in. It is taking to long according to him. I hope to have a computer at my home soon. I know I have been saying that for 2 years now!!!!!
Love,
Laura

Tuesday, September 13, 2005 12:06 AM CDT

I can't believe how difficult these weeks have been. I miss Maddie so much. I sleep with her blankets every night just so I can feel somewhat close to her. Taylor and I use them to wrap up while waiting for his bus in the morning. We talk about heaven and the stars in the sky and how bright they are as if Madddie is up there glowing down on us. I have become rather anal about her flowers at the cememtary. We have replaced them for the second time. I had bought a free standing cement cross at Marshalls and wanted it to go behind her flower box at the cemetary, but the cemetary staff had other plans for it. They removed it and said that it's against the rules. Give me a break. I see mylar balloons tied to different headstones and they always seem to remain there. I guess I was angry about having to chase down Maddie's cross. I have painted my moms entire house. I don't know if escape is the right word ,or if its just my way of coping at this time. If I didn't have Taylor, I would be in my bed with the covers pulled over my head 24/7. I don't have the choice, but to try and fuction as well as I can. I feel so lonely without Maddie. I had to buy Taylor some new shoes from Stride Rite becasue of his wide foot and I did evertyhing I could not to pass by Gymboree. That was Maddie's store!!!!! All the clothes were so soft and perfect for easy on and off. Maddie had certain stipulations that went along with clothing her. No buttons in the back, no zippers on the back or side and nothing that would bunch up and cause places on her back. All of her bedding was that tempurpedic overlay along with a foam egg crate. Her back was very bony and we never wanted any skin breakdown. All this energy went on daily in how to better the quality of her life. Now what do I do???? I hope we find good homes for her equipment. I know what it feels like to need a bath seat and have to wait until it's ordered. I remember using Chandler's kidcart and Brittany's carseat. I feel like if I can help another family then maybe I still have a purpose.

Love,
Laura Angel Maddie's mommy

Sunday, August 21, 2005 8:17 AM CDT

Words can not describe how I am feeling. I have to say sad, lost and my heart is broken into a million pieces. My Maddie was my world and my life.I long for one last smell and touch and holding of her sweet hand. I am so confused about what happened. I know that people think because she has been on Hospice for three years, that I should be prepared. I am not, nor can you ever prepare yourself for the hole that is missing from my heart. I wake up at three and look at the clock knowing it is time for meds and in and out cathing, the only problem is that there is no Maddie. Maddie slept in bed with me with her feeding pump on one side and her suction tucked behind the pillows. I have not heard the sound of the machine knocking against my headboard or the oxygen machine making its usual humm. The house is so silent. We went yesterday to dress Maddie at the funeral home and I had a hard time leaving. I gave her thousands kisses and held her hand so tight.I braided her hair like I do everyday and put body glitter all over her body with her usual lip gloss that mositens her lips just right. I painted her purple nails and toes because purple just does not go with a pink dress.My mom picked out her beautiful dress. Maddie had over 100 different polishes along with hair accesories and lip glosses in glitter form or regular.The night is played over in my head like a bad dream and I wish that I had not called 911 so I could have had those last special moments with my Maddie.I wanted to hold her but I couldn't while they worked so hard to bring her back. I was not ready nor would I have ever been. I took such pride in dressing Maddie to perfection and handling her healthcare, I feel like If I had just had a warning. I remember always asking Maddie's nurse Stephanie, will there be signs????Please tell me I will know that the end is close. She always said "yes Laura certain things happen to alert you that the end is near". Last weekend we went to the Newport Aquarium in Cincinnati and we also went to a movie. Maddie had not been sick because Steph came out late thursday for her weekly visit and she said Maddie sounds good Laura. Maddie had her usual weekly PT that day also. Around 12:00 I called hospice and said her stats are dropping and then said "no, wait she seems to be doing ok, no need to come out." Around 3:00 I checked her and she was low again I suctioned and she went back up. I had listenend to her earlier and she had movement in her bases so I was not too concerned. I stayed up from 3-5 and must of dozed of for about 20 minutes with her albuterol mask still running. I jumped up and checked her o2 and she was 40hen 30I freaked out and called my mom in to call for help. I knew it was a plug and we had to get it out. The paramedics came in and were very insensitive and said "she is barely breathing, what do you want us to do." I told them this had happened in the past and its a plug blocking her airway please help her. They said " well shes on Hospice!!!!" Those words ring in my head. This is my baby that there speaking of so matter of fact. They put Maddie in the ambulance and worked some more but I couldn't get close enough to her. I wanted to hold her so badly. They worked on her at the ER for a good 20 minutes and could not bring her back. If I could of held her without the tubes and the unfamiliar faces that surrounded her I would go back and change it all. We held Maddie after her body gave out and she took several last breaths and her eyes did move as though she was trying to bat them one last time. I miss her so much. I know god gave me Maddie because he knew that I would treasure her and take the best care of her, but it was not long enogh. I know she's in heaven but I want her here with me!!!!!! Maddie's hospice team has been so wonderful and we could not thank them enough. I know Stephanie will probabaly never forget the time that I paged her in a panic and she said "is Maddie okay?" and I said I cut her long beautiful hair and it looks awful. She said "we have a volunteer that cuts hair it will be alright." Knowing me, patience is not my forte, I went to a kids cutting place and had them even it up. Believe me Steph has heard it all. I have to say that I am so thankful that we got to take one last trip with Maddie. We went to Dollywood in July and had the best vacation. Maddie's little life would not of been the same without the love from you all. Maddie's "Gagee", my mom, stayed with me every night so that we could make her life the very best. We played so many musical beds that it would make somebodys head spin. Mom started out with Maddie from 11:00-3:00 and then she would lay out her meds and cathing stuff for me. I would come in and cath and give meds. I would watch many hours of tv at that time and typically fall asleep after she absorbed all her meds . I usually still had my glasses on the tv full blast with all the lights on.It was a circus but it worked and I could not of done it without Maddie's Gagee ( pronounced Gogee). I am also thankful for all of Jason's hard work for the newborn screening. I never wanted to seem not interested I just did not want to take Maddie out into the public. I know I may have tried to put her in a bubble but I took pride in trying to keep down any illness. I love you Maddie and you will never know what an impact your short life made on so many people. Its seeing Maddie for who she is, not seeing the horrible disease.
I Love you my sweet little angel have fun in heaven and give great grandpa a big kiss from your mommy!!!!!!
Love,
Laura (Maddie's mommy)

Sunday, June 19, 2005 11:13 AM CDT

It is hard to believe that Maddie will be four years old on July 16th. We are so excited and have planned a wonderful party at Gattitown. Gattitown has a neat carousel inside that she thouroughly enjoys to ride on. We actually went to Gattitown last year on her birthday along with Chuckee cheese. Maddie is getting so big and grown up looking. I plan on having a friend take pictures this year. she actually works for a photographer in town. We want outdoor pictures again. I love all the outdoor pictures that we have had taken in the past. We had a trip planned to Disney world for Maddie's big birthday present from my family, but the dates are unsure at this time. Amanda, Noah's mommy is taking their family to Disney around the same time. We would love to see Noah. We have not see them since the symposium several years ago. Taylor is doing wonderful!!!!! The summer has been very fun and relaxing. I try and divide my time between Taylor and Maddie as evenly as possible. Maddie has her hot tub time and Taylor has his weekly trips to the local public pool. I have decided to return to school in the fall. I am working towards obtaning a nursing degree. They have a program here where if you already have a Bachelor of Science then the 4year rn program becomes 2. I hope to finish in 2 years. I hope that I can juggle my caregiver role and return to school. I hope to have new birthday pictures on her website soon. I am so thankful that Maddie is doing so well. My baby is a fighter!!!!! a loved fighter!!!!I hope to get my computer back up at my house before school starts back. I will updated more often.
Love,
Laura (Maddie's mommy)

Monday, March 28, 2005 2:43 PM CST

Way too much time has gone by since my last update. We just celebrated Easter, and it was wonderful. The weather here was yucky but the day was well spent with family. Maddie has been doing awesome!!!!! I took her off her oxygen about a month ago. She stays in the high 90s. I think being off the oxygen has helped with her deep breaths. Maddie was only on 1/4 of a liter. She had been on it ever since October 2002. She did give us a scare in February. She got that awful flu that had been circulating. My mom had pneumonia and I had been sick for a long time. I knew she would catch it!!!! She ended up in the hospital. I noticed symptoms of the beginnings of a respiatory infection and we started her on Zithromax. My pedatrician was nervous about bringing her into the office because of all the illness. This flu season was real tough. I guess the shortage of flu shots didn't help. Maddie had her flu shot as well as the rest of the family. Maddie was admitted into the PICU on Valentines day. Her O2 was in the 70-80s. She was not doing well at all. She really scared me. She has never had a true pneumonia diagnosis. When we got to the hospital, they intabated her. They put her on the ventilator for a day and a half while they ran tests and deep suctioned. The tests all came back normal. They did not see pneumonia on the chest x-ray. I think Maddie was a bit of a mystery to them. After the deep suctioning they managed to pull several plugs from her chest. I swear she had a mucous plug stuck that was blocking her airway. I prayed so hard that Maddie would not leave us. We met a wonderful respiatory therapist with a lot of wonderful suggestions on how to keep her secretions loose. It's amazing what good can come of a bad situation. I used his knowledge and started her on the saline neb treatments. It really seems to keep her loose. While in the hospital, they could tell that she was breathing over the ventilator. She is such a fighter. Once they extabated her and stated her on the norm amount of oxugen, she totally made a full recovery. While in the hospital, they eased my mind about her need for the o2. After we were discharged I decided that unless she is sick or real junky, we will not use it. It is so amazing how her lungs seem to have strengthened. She is a true miracle. I am so thankful that we can share all of these wonderful days together. I am so excited that spring is here. She does not leave the house in the winter. I took her out in November and then once in Feb. I would not count a trip to the hospital an outing. I love long strolls in the spring. I know being trapped in doors in the winter is no fun, but I worry too much about illness. She still does manage to do therapy in the hottub regardless of the weather. It is in the garage and the temp is not too bad. Taylor has almost wrapped up his Kindergarten year. It is soooo amazing how fast time flys by. I will have new pictures on the website very soon. Maddie will be 4years old on July 16th. I can't believe that she will be four. She has gotten so long. She now wears a 6-7 top and 4-5 pants.Big growing girl. Major growth spurt!!!!! I promise that I will not go this long in between updates.
Love,
Laura (Maddie's mommy)

Sunday, December 26, 2004 4:44 PM CST

okay I have to say that it has been entirely too long since my last posting. Maddie has been doing very well. We had a wonderful christmas. My son, sister,niece and mother were all there to celebrate. It was very low keyed besides the two kids running circles around us. I am referring to my 6yr old and my niece. The two of them together in Taylor's room playing truly ends up in total chaos.My mom got Maddie a hottub for one of her christams presents. We actually got it in November. She has thoroughly enjoyed it. Maddie's PT and massage therapist do therapy with her in the hotub. I can really feel her whole body relax after we swim for a while. I will post some new christmas pictures along with hottub pictures. We started Maddie on the Mannatech supplement Ambrotose Ao and Ambrotose powder. I really feel that it has helped boost her immune. I will say that it is pricey ,but worth it. I started her on the powder and she appeared more alert. Then I ran out and just did the Ambrotose Ao which are the capsules, but she appeared more sleepy. They sent more of the powder and she is awake more. We will continue with the supplemnent at least through the winter months. I know everyone was worried that I might have too many expectations of the supplement, but as long as it seems to boost her immune that is good enogh for me. Maddie has not had a uti in about 3-4 months. That is truly remarkable. I still cath her four times a day and it seems to help. She also gets a samll does of Cipro and Amoxicillin alternating the two. Maddie does have secretions that seem to flare up at times but no pneumonia's. She went to the hopspital for a respiatory infection in November but they were not sure that it was not just a respiatory infection. She has never really had a true diagnosis of pneumonia. She has had some seizure activity off and on. I adjust her seizure meds as needed. I am so thankful for the wonderful days of enjoying her and having all these alert moments. I can't wait to put some pictures on her website. She is just growing into such a young lady. My baby is not so much a baby anymore. Maddie has gotten so long. She is so much fun to dress up. I am staying away from the scissors. It has been a year since I gave her the dreadful haircut. I need to face it I can't cut hair. Maddie's hair has finally grown long again. I think the supplement has helped with hair. I am going to schedule her first cleaning after the new year. Maddie's front teeth tend to have a buid up on them due to secretions. I brush and brush but the secretions are neverending. She has all of her teeth but once you get in you may not get out. I am wondering how they will clean them. She can bite!!!!!! I hope everyone had a great christmas!!!!!

Love,
Laura (Maddie and Taylor's mommy)

Tuesday, October 19, 2004 5:40 PM CDT

I know that I stated that I would update once school got going, but each day that passes start to blend into the next. It's so amazing how quickly time passes us by. Maddie has been doing exceptionally well. We had her doctors appointment yesterday for the flu vaccination. Taylor was thrilled to nominate his little sister to be the first in line. He was more than thrilled when they just used the mist on him. Poor Maddie had to endure the shot. I can't believe that Halloween is almost here. Last year Maddie was in the hospital on Halloween, But I still dressed her up. She was a duck last year and a will be a ladybug this year. Taylor is going to be a vampire this year. I hope the weather stays mild enough for lots of trick or treating. I am not looking forward to all the candy that we will have aroung the house!!!!!! Maddie continues with her water therapy once weekly at the YMCA. We love our trips to the ymca. I know the weightless feeling must be such a relief on Maddie's body. Maddie has also been enjoying her brother's portable dvd player. It's nice because sometimes the tv seems to far for her to see. I found a new position for Maddie that seems to be very comfy!!!! I found this bean bag like chair at a store near us. The filling inside the chair is different than beans because you don't sink. I have been through many different bean bags and she always sinks to the bottom. I love the new chair. Maddie still receives her massage therapy every other week. She really enjoys the relaxation that the massage offers. I will update soon with details of trick or treating.
Love,
Laura

Thursday, August 5, 2004 10:46 AM CDT

I finally updated Maddie's pictures. I didn't actually do it, Daniela did. Cheryl took some incredible pictures at Maddie's 3rd birthday party. She always does such a wonderful job. Taylor went to Atlanta for a week to spend some time with his grandparents. He really enjoyed his trip to Atlanta. While Taylor was in Atlanta, we took Maddie to Gattitown, and the Louisville zoo. We rode this train ride that was very bumpy. Later when we got home, I was preparing to cath her and noticed that she had a diaper full of kidney stones. We must of shook them loose. I guess that was our own Lithotripsy therapy. It is amazing that she did not seem effected by the passing of the stones. In all we had a great time. After the zoo, we stopped by a friends house and visited. We did many trips around town and shopping at the mall while her big brother was is Atlanta. We are looking into a trip to Kings Island which is an amusement park in Cincinatti. That will be our next big outing. Maddie amazes me. She really is a true fighter. School starts back for Taylor on the 16th of August. Maddie will have a preschool teacher doing activities with her once a week. It will be nice to get on some sort of schedule again. We continue to do pool therapy with Maddie at the ymca. We also swim at Sherri's. She is a great friend of ours. Sherri has this float at her pool that Maddie really enjoys. I got some real cute picture of her in the pool. I will update soon after school starts back.
Love,
Laura

Friday, July 16, 2004 4:40 PM CDT

Today is my sweet little girl's birthday!!!! I can't believe that she's three. We started the day with Chuckee Cheese and then ran around town looking for a new charm for Maddie's bracelete. We couldn't find what we wanted ,but we will. We took lots of pictures at Chuckee Cheese. Maddie really enjoyed watching the show. We celebrate her birthday next Saturday with a huge blowout party. We can't wait to celebrate with all of our family and friends. I will give an update after the party and have new pictures on her website. Maddie's doing so great and we are so thankful for each and every day that we share with our sissy. She's the love of my life. We are settled in the new home. My computer is still not set up yet so It is hard for me to have access to a computer. It may seem that we have vanished, but we are still here!!!! I will update soon!!!!
Love,
Laura

Saturday, June 19, 2004 10:46 AM CDT

Good News!!!! The house that I was going to get will not be ready for sometime, but I did find something better. This house was for sale by owner and is 3 yrs. old. It has more to offer. The yard is fenced in and bigger than the other house. It also has a patio deck off the back. Maddie's room is bright yellow. We showed her the room the other night when we went to sign the contract and, she loved it. It is very cheerful. We are decorating her room in bright colors with also a butterfly theme. We bought these big beautiful butterflies out of a magazine that my mom had. There are six of them and it makes into a mobile. A butterfly mobile is such an eye catcher. Maddie still loves to be read too. I got her this book that has butterflies and dragonflies in it. She batts those eyes with each page. She is so precious. Well I know its a short entry but I wanted to leave an update on the living situation.
Love,
Laura

Tuesday, June 15, 2004 10:12 PM CDT

Okay I feel so guilty about the lapses in time from one entry to another. My life is changing all the time. Maddie, Taylor and myself are moving into a home in my moms neighborhood. The house was supposed to be finished by early june and then mid June and now its unknown!!!!!! Needless to say I have been very stressed about this situation. Maddie has a birthday coming very soon. Her B-Day is on July 16th but the party will be on the 17th. We are doing the ladybug theme. I am so excited about gathering all the party favors and decorations. My goal is to find a ladybug pinata. I can't find one anywhere. I am a little anal about my babies birthdays parties. I want everything perfect!!!! We are renting out the clubhouse in my old neighborhood like we did last year. We are having so many wonderful days with Maddie. It is amazing how they can plateau. She's the woman on the move. Were taking her shopping, swimming, many long cart rips to visit her cousin that lives Cincinatti. The only trouble we have is with the UTIs. They believe that is occurring due to the kidney stones. Its hard flushing her without oversaturating her at the same time.
Taylor has been playing T=Ball and at times enjoys it depending if its a practice or a game. There whole team has really improved so much. We took Maddie out to the park to watch her big brother play tball. I think that made his day!!!I will have new pictures on her webpage as soon as my friend Cheryl can take them. I left everything in limbo because of the house not being ready. I will meet with her in July and have her take our family photos. She does an awesome job!!!! I cant stand this limbo process its annoying.I am finally going to sit back and let god take over and whatever happens happens. I know some of you may thank that we have fallen of the face of the earth but were still here. Good news Maddies' doing awesome!!!! I am knocking on wood at the same time!!!
I want be a stranger once I am settled in whatever home i will be in. New pictures will be put around Maddies' birthdate.
love,
Laura

Tuesday, April 13, 2004 7:34 PM CDT

I can't believe it's been so long since my last update. Time has flown by since our trip to Disney. We all had a wonderful Easter. We went to a church not far from home and then spent the day with my mom, sister and niece. We had an Easter egg hunt in the backyard for Taylor and Regan. The weather was not that great so I didn't take Maddie out. We look forward to this weekend because the temp will be in the 70s. I am so sick of this wet and chilly april weather. I am ready for lots of time outside in the warm sunshine. I know Maddie must be sick of the indoors. We did her therapy last Friday at a rehab facility. Maddie's P.T. was owed a favor by another therapist, so she worked with Maddie in her facility for an hour. Maddie had fun!!!! There was a platform swing and other neat swings that were appropriate for her. Her eyes got huge ,but then she tolerated it rather well. We are going to the YMCA on Friday for her pool therapy. She really enjoys the pool at the YMCA. The water is around 85 degrees and feels wonderful. I am hoping to have her B-Day pictures taken around the beginning of June like I did last year. I hope Daniela's friend Sheryl will do them again. I have been tired because of many sleepless nights due to uncontrollable secretions. I hope they will settle soon. I know they drive Maddie crazy. Ellen and Jeff visited several weeks ago. It was so nice to see them. We had a wonderful visit. Taylor has started T-Ball. He really is more interested in showing his birthmark off to other teamates than playing or paying attention. I think it's too easy to get distracted. We are not going to the symposium this year. We have so much going on and not enough time. One of my best friends is due around the end of May and I don't want to miss it. I swear everyone I know is pregnant right now. It is so weird how it comes in waves. My mom is also having her elbow surgery for the second time at the beginning of June. Her recovery time last go around was a lot longer than we expected. It better work the second go around!!!!! Her luck is about as good as mine. The dog Cali just had her surgery but it seems to not have worked. Thank god we found the hamster that was missing for a short while. I don't know why I take things on that require food and water. The fish we had was very low maitenance but didn't make it very long. I don't mix with fish. I will update new pictures very shortly. I hope to update sooner next time. I just don't know where the days go!!!!!
Love,
Laura

Wednesday, February 11, 2004 1:05 PM CST

Well, we just got back from our incredible visit to Disney World. We stayed at the Give kids the world village. I can't say enough about that magical experience in itself. The village is composed of villas, around the year ice cream parlor that is opened from 7am-9pm,a carousel,a train that you can ride on,a movietheater, a heated pool along with a waterpark,a gingerbread house where you have all your meals,a castle of miracles where Maddie has her own star, and many more special features. The give kids the world is so very magical!!!!! We arrived on Tuesday the 3rd and just stayed at the village and experienced all that the village had to offer, which is endless. We decided to get up early and start off at the Magic Kingdom at Disney. We couldn't of picked a better time to go because Disney was in it's off season and the crowds were very minimal. That was nice even though through Make A Wish you were allowed to go to the front of every line. That made the trip even more enjoyable. Make a wish put this trip together for Maddie in aroun 3 weeks time. We knew that she had been doing so well and it would be a great time to go while its freezing here at home. We were so taken back by the Make a wish foundation and all the volunteers that made Maddie's trip come into fruition. We couldn't thank them enough for this true treasured time and fun that was experienced with Maddie. We were so pleased that she tolerated the flight, the changing of weather and disruption of her schedule. We arrived at Disney and stayed for at least 7 hours riding a multitude of rides, shopping, and enjoying the great Florida weather. Maddie rode the teacups, winnie the pooh about 4 times, Peter Pan several times,Buzz Lightyear, Haunted Mansion, It's a small world, rode on the jungle cruise boat that was a guided tour, and attended the Country Bear Jamboree show. Taylor got to ride on Space Mountain with me and Jason. Gagee and Maddie sat out for that one. Taylor loved spending time with his sissy and experiencing this magical vacation with her. He loved watching Maddie and how big her eyes would get when it was time for a ride. They both loved the Pooh ride !!!! It was very colorful yet had a thrill added to it that got Taylor's attention. We even rode the teacups and not only let it guide us around but gave into the temptaion of spinning the teacup itself. We couldn't help it !!! I am sure Maddie was wondering what in the world are they doing know. I think she enjoyed the thrill of it. She's a thrill seeker just like her mommy.I can't forget to tell how wonderful it was to have the Make A Wish button so Maddie could take pictures with all the characters first. They saw her button and swooped her to the front of the line and talked to her and we took many photos. We spent two days at Magic Kingdom and then went to Sea World. Wow!!! We all had a wonderful time there. We took Maddie to the dolphin show and two Shamu shows. The first was during the day and the second was at night. I think it was called rockin with Shamu. The two shows were very different but very entertaining. We ate at a place called Dine in with Shamu. What a neat experience. You ate a buffet type dinner while Shamu swam right next to you. His tank was in the restaurant and the trainers had her perform a little while you ate. That was a neat experience. I held Maddie up at Dinner and showed her Shamu while trying to hold back from diving in his tank and going for a quick swim. It looks like so much fun. They do have the underwater viewing of the dolphins and whales. We strolled her and put her real close to the glass so she could see them while they played. Dolphins and whales are such amazing creatures. The day at Seaworld ended around 7:30. We stayed until the park closed. We were all pooped!!!! I couldn't believe how Maddie was so okay with going going going!!! The next day mom, Maddie and I stayed back at the village for a day of respite. We were all worn out. Jason and Taylor went to Universal studios. They rode many rides and had a blast. Taylor got pictures with Spongebob and rode different cartoon rides like Jimmy Neutron and even rode Jaws and Back to the future. They made it a full day and enjoyed their boy time together. The next day was set aside for MGM Studios. The weather was cooler so we had to bundle Maddie. We had been so lucky with 70s and 80s temps. This day it was in the 50s and a little windy. We went to many shows like the Muppet 3d show, little mermaid show,playhouse disney show which features Bear, Rollie, Stanley and Book of Pooh. I held Maddie up for that but this day she was a little sleepy. It might of been the coolness of the day. We still did more shopping and last of all rode the Tower of Terror. I talked mom and Taylor into riding it together. That one was kind of scary seeing that the ride was not working properly. Overall we had an incredible trip. I know that Maddie prefers to be on the go. I feel bad being at home in the cold and nothing for her to do. I don't like taking her out in this cold weather. I guess we will have to move to Florida. Just Kidding. We couldn't thank all the people that made this trip happen. Maddie truly got her wish!!! I forgot to add that we did see Eden's brick at the Village and took a picture of it. It was hard trying to get Maddie in a position out of the sun where we could get both Maddie and Eden's name. After different positions we decided to take a picture of Maddie and then Eden's brick. Tiffany that was so special seeing Eden's name right where we were staying. Thanks for telling us to look for it.
Love,
laura

Sunday, November 23, 2003 6:27 PM CST

It has been a while since my last update and life gets busier as we head into the holiday season. We actually had our tree up around the first of November due to holiday pictures. Cheryl a friend of Daniela's came up again from E-Town to take pictures of Maddie and the family. She wanted the tree to be up for the pictures. They turned out gorgeous!!! She always does such a great job. We thank her very much. Maddie and Taylor visited Santa last week and had precious pictures taken. It is amazing the difference from last year. Maddie was not able to take pictures last year due to her condition. She was not tolerating touch. I am so thrilled that we are so blessed with our beautiful baby girl. I got a wild hair and cut Maddie's hair last week. It turned into a hair nightmare. We took her to Cookie Cutters where they fixed the dilemma. Her hair had gotten so long that I had trouble with bath time. I hated to cut it ,but now she's got the more sophisticated look going. It does look precious!!!! I have to admit that I was stressed out that day until we fixed it. It didn't look as bad as the haircut that my sister decided to give me in the 7th grade. It was an effort to look like Dorothy Hammil, although the idea was okay at the time ,but the results were very scary. We are having Thanksgiving at my house. We were going to order it all from the grocery ,but I changed my mind. I am cooking most of it and only ordering the turkey. I don't trust myself with a turkey. Everything else is going great. Maddie continues to amaze me everyday. she flourishes and blossoms and is truly amazing. We did start the water therapy back now that the pool reopened. She does enjoy that thoroughly. Have a Happy Thanksgiving.
Love,
Laura

Friday, October 3, 2003 4:22 PM CDT

I finally got a new monitor for my computer. How irritated it has made me to be stuck without it. Alot has happened it seems. Well, Taylor had his big 5th birthday party on the 20th of September. It was wonderful!!! We took Maddie to the gymnastics place where the party was held. She was not feeling well that weekend but wanted her there for the special day. Maddie has had this horrible respiatory infection/pneumonia. She had a chest x-ray and they thought it looked suspicious of a possible pneumonia. She was given the Rocefin shot and put on zithromax. She seems to be doing better. This is her second round of the shot and the antibiotic. The virus was very catching. We all passed it around the house. It took time for us all to get over it. I can't imagine how Maddie must of felt being so compromised already. It makes it harder for her to shake it. Amanda, Noah's mom, gave us the idea of "the vest". The vest vibrates and it is generally used for cystic fibrosis kids. It is hard to find but very effective. It breaks up the junk very quickly. Were waiting to hear back from this company that strictly does rentals of the vest. I can't imagine why no one ever mentioned this device before. We are also awaiting Maddie's stander. We decided to rent one from this technology company and try it out. It is amazing how this disease can have so many ups and downs. You think one minute that their is no one that she could handle the stander and the next week she does great. I have been doing alot of rocking and changing of positions to loosen the junk. If we could just get rid of the secretions and junk she would be cooking!!!! Maddie's grandpa made the most amazing video of Maddie starting from her birth to now. I have only watched it once because it's too hard. I remember being at the symposium and watching the video of Chloe. The video tore me to pieces but is such a treasure. When we got home I stared thinking about piecing a video together. I am not knowledgable for how to begin this project. I called Al and asked him if he would do this for me and he said why yes. Maddie's grandpa is retired and is very talented and good with electronics!!!! He brought the video up from Atlanta when they came for Taylor's party. I can't imagine how long it must of taken. The music the editing the time that was put into it was apparent. I love it!!! I did find a missing piece that I recently purchased. It was the song by Carly Simon Itsy Bitsy Spider. It was used in Chloe's video and the Hunter's Hope. Lisa told me the artist name a while back and I just found it and love it. The song is truly heartwrenching. I thank god for my Maddie and the time we have had together. I look forward to many more days, months or even years together. You never know what gods plan is for Maddie!!!
P.S. still no email. Tiffany don't give me a hard time it will happen. I know I am probably the only person without it!!!
Love,
Laura

Tuesday, September 16, 2003 1:25 PM CDT

It's hard to believe that Halloween is almost here. I remember last year taking Taylor Trick or Treating but not Maddie because she was not doing very well. She truly amazes me everyday. We are looking forward to Taylor's birthday which is Septamber 22. We are having his party on the 20th at the gymnastics place this year. This time last year I was still at Duke with Maddie. I can't believe that it has already been a year. Last year we left Durham around 4:00 on the 20th and I drove straight through in the pouring rain. I missed my family so much. A month is a long time to be away from my boy. Several days later we turned around and had his birthday party. Wow, what a party. Looking back on Maddie's condition back then is scary. She was having trmendous fussiness and had not adjusted to her Methodone. She continues to do very well. I thank god for each and everyday that we have her with us. Her breathing is back up to 16-17 per minute. She does still struggle with her secretions. They are an ongoing battle for Maddie. We do worry about Taylor being back and school because of all the illness that he may bring home. These fall and winter months will be tough. Maddie has her urination schedule that keeps her going. Massaging her bladder helps start the process. She never goes over 8 hours without going. This has kept the UTI's down. Knock on wood!!!! You never brag or start to feel to good because the minute you do something goes wrong. I hate to be so negative but we do alot of knocking on wood around here. My mom goes in for her elbow surgery on October 15th. We will be so glad when she's cured of the elbow trouble. I know how much she has suffered with it. I was going to start taking some nursing classes starting October, but I have decided to wait. I thought with Taylor in school that it might free some of my time. I don't know where my days go. Some days I don't stop running!!!! Our family is Taylor, Maddie, Cali the dog and don't forget Buttercup the hamster. It's hard juggling it all. Please say a prayer for the Hernandez family. They have recently lost Elly. We are all praying for their family. We will miss Elly so much. She was the closest to Maddie's age of all the Krabbe kids. We don't know any other Krabbe kids that are Maddie's age.
Love,
Laura

Thursday, August 14, 2003 9:24 AM CDT

I am sorry that it has been so loneg since I last updated, but things reamain chaotic with us. Maddie's brother Taylor is very demanding and enjoys playing with his friends 24-7, which does make it a little chaotic here at times. School starts back and I hate to say it but thank the lord. The energy level of a soon to be 5 year old is neverending. We did visit Coney Island amusement park last weekend with his cousin Regan and my sissy. The kids had a blast. The hard part is caring for Maddie but also not robbing Taylor of his youth. I feel pulled in many directions trying to do the balancing game. I couldn't pull it all off if my mom was not living with me. She is truly a lifesaver. Maddie has been doing great besides all the secretions that she battles daily. Nightime's are worse for the secretions. They do build and she has to be suctioned around the clock. I take turns with my mom. One night she will take Taylor to bed and I will battle Maddie's secretions with her and the next night we switch. It is a team effort that is so needed. Maddie's o2 remains great and everything else is wonderful. If they only had a medicine that dried them up without totally wiring her!!! The Robinol does not seem to help. I have been giving her pediacare during the day but that also wires her. It is a ongoing battle. I will try and update more frequently.P.S. please keep the Walters family in your prayers because the 20th is when Brittany grew her wings and flew home. We will be thinking and praying for them.
Love,
Laura

Sunday, July 27, 2003 3:56 PM CDT

A mother's intuition

It seems like only yesterday that I was on my way to the hospital with my dear Maddie in the back. The ride to the hospital was one I will never forget. I picture the whole day in my head over and over and, how my life changed forever. Driving to the hospital tears welded and I couldn't see nor did I want to see what lies in our future. I knew that there was something so very wrong. I don't know how I knew,but I did. Maddie was at the beginning of this dreadful disease. Looking back when Maddie was a baby, I did everything to prevent even the smallest illnesses, like a cold. I breastfed her for 10 months in order to ensure good health. I had always dreamed of having this baby girl and I would do whatever it took to keep her healthy. After arriving to the hospital, Jason finally showed up for the doctors visit. He had planned a suprise party for my 30th birthday. How could I be excited knowing that there was something so wrong with my Maddie. After many tests and the final diagnosis, it took a toll on me. To think that I worked so hard to prevent the typical small illnesses, how do I go on from this one. Dealing with many poor doctors and the divorce,one thing that I have is unconditonal love for my Maddie. How can people not see how much she offers and what a gift from god she is. Maddie is my life and my everything. I will fight with her to the bitter end. Maddie has given me the confidence that I can accomplish anything out of life. She is my everything and my heart breaks daily for her. I guess what they say is that things happen for a reason. Maddie is the reason that my life has changed forever and I will always remember that. She has made me so very strong and it's all because of her love.
Love,
Maddie's mommy

Thursday, July 3, 2003 9:14 AM CDT

We have only 9 days until Maddie's party. I can't believe that it is almost here. We had a rough 6-7 days. Maddie was having decreased periods in her respiration rate. Her normal rate is 18-22 per minute. Her rate had dropped down to 6 per minute. Hospice had come over and had "the talk "with us. I really tried not to listen because I feel that when Maddie's is ready to fly to heaven,I will know. I am so in tune with her that I have a feeling she will let me know. Maddie's nurse always mentions how resilient kids are apposed to adults. I feel like she has so much fight left in her. I as well as Maddie we are going to fight together. She did go to the hospital last week and they did an EKG. Her heart looked good. Her pedaitrician also ran some lab work to check on liver and kidney function. They were looking for all possibilities rather then just a decline from the disease itself. I can't say enough good things about them. They are so upbeat and positive. I can't believe that we stayed with that other group for so long. Both of Maddie's pediatrcicans decided that they want to slowly wean her off the Neurotin. They have a feeling that maybe her Neurotin is interacting with the Methodone and other meds that she takes. We did notice some of her decline shortly after starting the seizure med. We pray that the seizures don't return. It has been several days since we started the weaning process and have noticed her rate has gone up. Yeah Maddie!!!! They also started her on a heavy dose of Lasix. The Lasix has pulled the fluid right off her body. She had gotten so bloated and swollen. That may have been another side effect of the Neurotin. Maddie seems to overall made a turn around. I do appreciate the calls and support from the Krabbes family.
Maddie's got new pictures thanks to Cheryl. Cheryl is a church friend of Daniela's. She traveleld up from Radcliff, KY with Daniela. I can't thank her enough!!! I love the pictures. I should receive them in the mail soon. Daniela got the CD and updated Maddie's page for me. Thank you Daniela. I will update after the blessed event. I just can't belive her party is so close. When Maddie was first diagnosed August 5 2002. I didn't know if we would ever celebrate her 2 birthday with her. I am very thankful and thank god everyday for Maddie. Please keep Elly Hernandez in your prayers. She is very close in age to Maddie. Thanks Ana for the conversation because I needed it. If you ever need to talk, don't hesitate to call me. Thanks to Lisa for our talk. I appreciate all the support from family and friends.
Love,
Laura

Thursday, June 12, 2003 8:25 PM CDT

It has been a while since I last updated!!!! We remain busy busy with all the therapy and different schedules. Taylor has beeen with his grandparents in Atlanta for 8 days now,and I am really missing him. I do think it's great for him to spend this time with family. He really needs to be the center of the universe. I feel bad that at home he feels jealousy because of all the time that has to be devoted to his little sissy. It does him good to get the total attention of his grandparents. Maddie is doing great!!!! We took her to Target tonight in her carseat. Yes, we used the carseat that was Brittany Walters. We have not been able to use it for some time. Maddie is now tolerating so much touch and movement. It's truly a miracle. When we were at the gas station before the outing, I knocked on the back window and waved to her. She started to lift her hands as though she wanted to wave back. When Maddie was well, I used to knock on the window and she would crack up laughing. She would get so tickled. It was real neat being able to once again obtain a response out of her. She continues to talk through her eyes. She knows what she wants!!! She will let you know if given the chance. I am so proud of her.We have also been doing water therapy at the YMCA. Maddie's therapist, Beverly, does her PT in the water and it seems to really relax her. We usually work with her for about 30 minutes. How exciting to see her enjoy life. She is a true inspiration. It's amazing how many lives she has touched and will continue to touch. Her 2nd birthday is around the corner. Anyone that knows me knows how hard it is not to go a little overboard on birthdays for my kids. This one is so very special and believe me I am going all the way. I am renting out the clubhouse in my neighborhood to accomodate the amount of family and friends that I have anticipated will share this very special day. My list is up to 70 people. It grows all the time. I can't wait. We bought her party dress and now in search for the perfect bow. We will be taking pictures on June 18th. A photographer is coming from Elizabethtown, KY. She is a friend of Daniela's. I have seen her work and am so excited to get some recent pictures of my baby doll. I will try and update more frequently!!!
Love,
Laura

Sunday, May 18, 2003 9:04 AM CDT

Well, we came back early from the symposium yesterday. Maddie got sick on Thursday night and had a severe case of reflux. She has never thrown up that much through her G-Tube. That was pretty frightening. We took her to a local hospital on Friday to check for any aspiration due to her congested lungs. She did not aspirate, but I was concerned because she was not sleeping and had so much junk in her chest. The symposium, where do I begin? I was so excited to meet all the wonderful kidos and family that I have been talking to by way of the computer. It was nice to finally put faces with these voices. We really enjoyed the little time that we spent with the families. I took some wonderful pictures and will post them on her site very soon. I had a difficult time with depression during the sympoisum. It was a wake up call and a heartwrenching experience. The support factor during these times is essential. The symposium is so emotional anyways. The goodnews is that Maddie is okay. I thank all of you for the support during the symposium. I keep all of you guys in my thoughts and prayers.
Love,
Laura

Wednesday, May 7, 2003 5:03 PM CDT

It has been a while since I updated Maddie's webpage because alot of adjustments have had to happen. First of all, I want to say an extra prayer for Makayla's family during their time of grief. Makayla has been a true fighter and an inspiration to us all. We will miss you sweet girl!!! Maddie was crusing along doing okay until this week. She has an ear infection along with another UTI. We took her to the doctor yesterday and they called today and confirmed my suspicion. I am so glad that I learned my lesson about trusting my instincts, because most of the time I am right. They did an in and out cath and the urine looked clear, so I think we caught it soon enough. Please pray we did!!! The symposium is so close and we want her in tip top shape for it. The new pediatrician is so wonderful. She makes me so relaxed and not worry as much about the frequent use of the antibiotics for all these various infections that she gets. Maddie has been communicating through her eyes. If you say Maddie bat your eyes she will do it after you. I can't imagine how frustrated she is trapped in that body without a way to smile or show some sort of emotion. This is truly a breakthrough. It shows that these kidos really have alot going on up there even though it doesn't show outwardly. I am amazed everday that she is with us. She is really been doing overall pretty well. I think she could sense previous negative behaviors that were present in our home at one time. Since the negativity is gone, it's amazing how she has blossomed!!!!! Taylor is doing better overall. He loves on his sister constantly and asks if she's better because of her wakeful time. I guess he thinks if her eyes are open, then she's no longer sick. It is hard watching him with her. He loves his sissy!!!! See everyone at the symposium. I can't wait to meet everbody.
Love,
Laura Heflin

Tuesday, April 8, 2003 6:07 PM CDT

Maddie was doing so wonderful until all of her secretions started back. I began her albuterol treatments again every 4-6 hours. I am praying that it's either the extra saliva from teething or just allergies. The other day was gorgeous ,so we visited outside with our neighbor and enjoyed the beautiful sunshine. Our neighborhood is blooming like crazy. It may be all the darn pear trees that are affecting her allergies. It is hard to tell so soon. We are scheduled to have the VCUG test run at UK hospital tomorrow at 10:30. Say a prayer that all is well. The test will determine if she is having any renal reflux. It also determines how well the bladder empties and if there is any risidual. I wanted to wish Makayla Pike a very Happy B-day. She turned two today!!! I pray that we will be given the chance to celebrate Maddie's 2nd Birthday. Maddie will be 21 months on the 16th of April. We will have a mini celebration just like we do every month that she remains with us.
Thanks for all your support!!!
Maddie's Mommy

Friday, March 28, 2003 12:58 AM CST

Alot has happened over the last week. The good news is that we have an awesome pediatrician. My mom and I took Maddie to her first visit on Thursday. The woman cares and it shows. That is all in the world that I ever wanted was a good doctor with some compassion. She is used to working with either terminal or critical kids. I think that will work to our advantage. Maddie's UTI is cleared, although she still has around 40-50 white blood cells. Our Hospice nurse will cath her again on Tuesday and we pray that she's clear. I am so excited about the symposium. I will be driving with my mom, Maddie and Taylor. I do dread the long trip, but I can't wait to meet in person all of you. I pray that Maddie will do okay in the car. She can't tolerate her carseat, therefore we will make her a bed in the back of the van. Thanks for all your support through these tough times.
Love,
Laura (Maddie's mommy and biggest advocate)

Monday, March 10, 2003 9:03 PM CST

I am trying to keep updating more frequently to keep everyone better informed on Maddie's condition. Maddie finally got over the upper respatory junk, but now were on to a UTI. I swear it's neverending!!!! I think that all the antibiotics killed all the good bacteria which left her suseptable to a UTI. She is currently taking a medicine that strictly targets the bacteria that produces these type of infections. I started to notice several weeks ago after being on the Augmentin for the respatory infection that her urine was having a strong odor. I informed her pediatrician of the change and he thought that it was impossible due to the string of antibiotics that she took to get over the respatory infection. I saw the other pediatrican in the group 8 days later and informed her of the odor. She assured me that it may be the antibiotic leaving her system. Maddie's nurse came out and did the in and out catheter and noticed the appearance of her urine. It didn't look clear at all. I feel so bad to leave her in that situation and not going with my gut feeling. I will never go against my instincts and think that maybe I should listen to her doctors. Other than all the infections Maddie seems to be doing okay. She enjoys her Kidcart and wheeling outside. Jason is building a ramp for her Kidcart out of our garage so it will be easier to take strolls. We are so excited about the symposium!!!! I do dread the long drive. I thought flying would be too difficult changing planes and lugging all the equipment plus keeping her comfortable.
Please say an extra prayer that we are able to keep her healthy for our trip to New York.


Thank you to all for your kind words and support for our family.
Love,
Maddie's mommy

Tuesday, February 25, 2003 3:54 PM CST

I know that it has been forever and a day since I updated, but Maddie has been sick with the respiatory junk. My time has been consumed with Maddie and Taylor. Well, Maddie has had the infection for several weeks now. We had a visit with the pedatrician last Saturday. They injected her with a strong antibiotic. Today, we took her back to the doctor for another round of the antibiotic. We are praying that it does the trick. I am so amazed how well she tolerated the trip to and from the doctor. She did great!!!! I swear everyday is so different for Maddie. One day a travel can be traumatic, and the next day can be so peaceful. You never know what to expect. This whole disease is so unpredictable. You find yourself trying to play doctor to try and figure out why certain things happen and what it all means. Doctors, where do I begin!!! Not all are bad, but the good ones are very few and far between. Why do so many doctors feel the need to let their big egos get in the way of compasionate doctoring. I am on a roll. I took Maddie to her pediatrician today, and was rubbed the wrong way. The disease is devastating enough without a pessimist doctor making comments about all the horrible things that could happen with the use of antibiotics on a continual basis. Really, what us Krabbe parents really need is someone pulling for our child but not always looking at the dark sides of things. We all know that we will not have our kids forever, but the little time that we do have does not need to be ruined with a rundown of all the wrong things that could happen at anytime. We love to focus on the positive and cherish the time that we do have. I am sorry for my rambling but todays visit was annoying. Maddie has had a great day despite her mother who is ticked off with the whole medical profession. Maddie has spent most of the day in her kidcart. She has tolerated physical therapy by her mommy and grandma (Gagee). Taylor named her that when he was a baby. Maddie has exercised on her therapy ball, and has been stretched, along with strolls through the house in her kidcart. I am so impressed with how well she's tolerating movement. Her PT will enjoy working with her limber little body tomorrow. Yeah Maddie!!! We are so proud of you. Don't forget to say a little prayer for Makayla Pike. Makayla is back in the hospital. We are pulling hard for you precious Makayla. Maddie is looking forward to New York. You guys will meet there and thats all I am going to say.
Love,
Maddie and Taylors rambling mommy

Wednesday, January 29, 2003 at 07:48 PM (CST)

Wow, this week has been pretty good so far. Maddie's G-Tube infection is clearing up. Yeah!! Stephanie, Maddie's hospice nurse will be changing her G-Tube out this week. We are switching to the Mickey. Maddie did have the spring retractable one, but it is defective. We had her G-Tube put in at Duke when we were there in September. We recently realized that the reason the tube shoots peptamen along with medicine out is because it's broken. Okay, it only took me 5 months to realize that these tubes are not supposed to do this. I always wondered why anyone would get this type of tube. Changing the tube will be a little scary since Stephanie has never done it before. I do have faith in her because she's awesome. she's the only one that I trust with my Maddie. Maddie I am so sorry but it has to be done. You will like it alot better. I can't stand to think that any pain will be inflicted on her. I think her pediatrician wants us to see the surgeon but were not. Maddie can't handle the car movement, therefore, we are staying at home. My doctor is a little scared of Maddie. Her Pediatrician along with the other doctors in the team have never dealt with a terminal patient. They are kind of freaky at times. They are trying so I have to give them that. Maddie has turned over a new leaf this week. She has become more wakeful and alert. I really see her looking and focusing at things. That is very positive and exciting. Knock on wood!!! The minute you become comfortable and brag all hell breaks loose. My mom and I were given the opportunity to take some cute pictures of Maddie last weekend. She did great!!!! I couldn't believe that she tolerated the movement like she did. You go Maddie!!! We have scheduled a picture session for next week at our home. We are doing black and white pictures. I have always wanted to do some, so I am going to do it. We had family pictures made last July after Maddie was diagnosed, because I didn't know how long she have her beautiful smile. She no longer smiles but that doesn't matter because she's beautiful anyway. Keep your prayers going for baby Noah at Duke. Also remember the Forslind family and all that they have gone through. Maddie sends lots of love to all of you.
Laura Heflin (Maddie's mommy)

Friday, January 24, 2003 at 04:42 PM (CST)

Maddie's 18 month celebration was wonderful. We had some friends over to help us celebrate her big birthday. It did snow that night,and the roads were kind of slick, so we kept the party simple, but nice. The cake wasn't as bad as I thought it would be,actually it was either pretty good or I was hungry!!!! We took some pictures of Maddie next her cake. I will update her pictures very soon. We just got a digital camera ,so we are still trying to get the hang of it. Maddie got over her last UTI a week ago. Yeah!!! I sware you get one thing cleared and something else happens. Maddie's got an infection around her G-Tube area. We are treating it with cream and antibiotics. We pray that they will do the trick. Besides the infections, Maddie has continued to hold her own. Taylor seems to be acting out quite a bit. He is extremly needy for my attention 24 hrs. a day. I think he's going through a feeling of insecurity. It is hard to figure out what is running through his four year old mind. Our hearts go out to the Forslind family in their loss of Mitch. We continue to pray for the strength that they will need to get through these hard times. We will also be praying for Anne and Gina as they prepare for the Duke boot camp. We look forward to seeing you guys when you get back. Oh, I can't forget to mention Daniela, the one that pushes me to be all that I can be. I have to give you a hard time but you know I am kidding!!! I thank all of you for praying for our Maddie. We have so much support from our family and friends. We appreciate all of the extra prayers.


Laura Heflin (Maddie's mom)

Wednesday, January 08, 2003 at 02:28 PM (CST)

Maddie turns 18 months on January 16th!!! Go Girl!! Maddie has had the respiratory junk lately so were in the process of trying to clear that out. She is also breaking three new teeth in which makes all things a little worse. We started back on her albuterol treatments around the clock in order to keep everything loose. Taylor started back to preschool today. He was very excited to see all his friends. He asks lots of questions about Maddie and about her dying. It's hard to tell how much he understands about death and dying. I try and answer any question without breaking out into tears but that can be difficult at times. His main concern is that he wants Maddie here but when it's her time, who will play with all her toys. He's also worried about all the machines. He wants them out of here. I guess that is his way of wanting a so called normal house. It tears me apart to see Taylor kissing on Maddie and the love that he feels for his little sissy and knowing the pain that he will feel when she is gone. We take it day by day.
Laura Heflin (Maddie and Taylor's mommy)

Thursday, December 19, 2002 at 07:36 AM (CST)

I know that it has taken me forever to update Maddie's web page,but we have been very busy trying to get ready for the holidays. Daniela along with family members are about to loose there patience with me because it's taken a while to update. I'm sorry!!! Well, Maddie has remained stable for the last several months. she continues to have UTI's. I'm not sure why she has had a reoccuring Urininary Tract infection. Her kidneys appear to be at full function due to her urine output. Good job prissy!!!! That is my pet name for my Maddie Mae. Thats another. Maddie lost her friend Aubrey on Sunday the 15th. Our hearts go out to Ellen and Jeff in there struggle over this holiday season without Aubrey. Aubrey we miss you!!! We pray for all the Krabbe families that have lost children and have to struggle through these holidays without there loved ones. Santa came over to visit Maddie and her big brother Taylor last night. We got some great pictures. Keith and Kelly we appreciate the Santa visit. We are just so thankful for everyday that we are given to spend with our beautiful baby girl. Maddie hit her 17 month milestone on Monday the 16th. Happy Birthday my precious angel. The new pictures should be on her web page very soon.
Merry Christmas to all!!
Laura Heflin (Maddie's mom)

Monday, November 18, 2002 at 10:25 AM (CST)

Wow, I can't believe that Maddie has turned 16 months. She has gotten so big that its hard to keep her clothed. Today we are having a little celebration for her big day. Daniela, Dennis, and Taylor Walters are all coming up from Radcliff,KY. My boy Taylor and her girl Taylor enjoy each others company. We are all excited about our eventful day. Yesterday we put up the christmas tree and placed two lit reindeer in the front yard. I guess it's a little early for all the holiday decorations but with these kids every day is crucial. I guess maybe I feel that if I decorate the house and keep it cheerful it might help with the reality that we face everyday. Maddie continues to sleep most of the day away. We continue to pray that she will come around. She has gotten over her respiratory infection and her lungs are clear as a bell. We take one day at a time. She is our precious angel and we cherish everyday that we have her with us. One more thing!!! Jason put together a huge fundraiser named Maddie's Gift. All the proceeds went to Hunter's Hope. The fundraiser was to raise awareness and money to improve newborn screening locally and nationally. They raised about $20,000. Thank you to everyone who donated and helped out.
Love,
Laura, Jason, Taylor and Maddie

Thursday, October 17, 2002 at 06:40 PM (CDT)

This is my first journal entry because of how busy I stay with Maddie and her wild brother Taylor who doesn't ever stop going. Maddie celebrated her 15 month B-Day yesterday. I can't believe how big she's getting. We went to the pediatrician yesterday for a height and weight check up. I've been concerned because of her sudden weight gain. She has put on 3lbs in the last three weeks. She appears real puffy to me. Hospice came out today and took blood to check on her white blood count and any possible renal trouble. The nurse ordered Lasix for her water retention. She also noticed that her ears were not looking that great. We just finished her 10 day round of Augmentin. I guess we will wait and see if they improve. Pray for Maddie because we take one step in the right direction and then take three steps backward. Maddie has had a couple of good moments at night with her daddy. She loves her daddy!!! I feel like the villan sometimes because of how frequent I have to suction her. I know she must think oh here she goes again. I hate all the stuff I have to put her through.
Hugs and kisses the Heflin family
P.S- We appreciate all the entries and support from everyone!!!

Thursday, October 10, 2002 at 09:55 AM (CDT)

Sorry I have not updated in a while. We have been really busy with birthday parties and life. Taylor had a great birthday party two weekends ago. Everyone had a blast. We were joined by the Walters (Brittany's Family) and by the Rugari's (Gina's Family). It was so nice to have some other Krabbe Families there with us and Maddie. Maddie gave us a scare on Tuesday night. We spent all night in the ER at UK hospital. The hospice nurse came over because Laura was concerned about her breathing. The nurse thought Maddie might be going into pnuemonia. The hospital did a chest x-ray and a deep suction of her throat along with a breathing treatment. It really seemed to help her out. Maddie was already on an antibiotic for an ear infection, so there was really not much to do at this point. They felt it was not pnuemonia at this point, but wanted us to watch her closely. The fall and winter season are going to be real tough because of cold season. These Krabbe kids are real likely to get pnuemonia. Maddie is resting pretty good at this point. But we are always on our toes. Laura is really exhausted because she is up throughout the night suctioning Maddie. She is hanging in there great though.

The fundraiser I am organizing is really taking off. It has been labeled MADDIE'S GIFT. This is her gift to all the future Krabbe kids. It has been set for November 12. I am setting up an account at First Federal Bank here in Lexington. I will pass along more details when i get them. We hope to have this fundraiser every year. So it will be an ongoing affair.

Once again thank you to everyone who have left so many kind messages on the guestbook. It really means alot to hear from everyone.


Jason, Laura, Taylor and Maddie

Wednesday, September 25, 2002 at 12:52 PM (CDT)

Everyday with Maddie seems to be a little more special now. Her condition appears to keep going down hill. She has another ear infection and is out of it most of the time. The smiles are very few and far between with little movement anymore. Laura and I are really be faced with the fact that she will not be with us forever. Unfortunatelly this means planning on our parts that we really do not want to face. Maddie always seems to be hanging tough despite her breathing and infection problems.

On to more upbeat things. I am organizing a fundraiser here in Lexington to raise money for newborn screening. With support from some local radio and television stations we have come up with a great event so far. It will be November 12 at Austin City Saloon. If anyone can attend that would be great. But we understand everyones schedules. What I could use some help on is getting raffle items donated. If anyone has or knows of anyone willing to donate items to be auctioned or raffled that would be greatly appreciated. We already have local UK autographed as well as some NFL autographed items being sent. Also some local national music acts will be possibly there. I cannot say yet who it will be. All proceeds will go to Hunters Hope to go towards newborn screening. If anyone has any items or suggestions please let me know.

Once again thanks to everyone for their kind words and thoughts.

Peace and Love,
Jason

Wednesday, September 18, 2002 at 07:48 AM (CDT)

Maddie and Laura are finally coming home. They should be leaving Thursday morning. So please keep them in your prayers as they will be traveling all day Thursday. Maddie got discharged Saturday morning from the hospital after her surgery. But they had to go back to the ER Saturday night and stay in the hospital till Monday morning this week. Maddie starting throwing up Saturday night. She seems to be doing much better now. Dr. Kurtzberg and her team have changed her formula to help her tolerate her feeds a little better. Maddie has also been put on methadone as well as adivan. They feel this will help keep her more comfortable. All of us here in Kentucky cannot wait for them to get home. Especially Taylor!!! So now we will get back to some sort of normal routine. Thanks to everyone at Duke and to everyone who has kept Maddie in their thoughts and prayers while she was there. Until next time.
Peace and Love,
The Heflins

Thursday, September 12, 2002 at 09:49 AM (CDT)

Maddie had about an two hour surgery yesterday at Duke. They put in a G-Tube and also what is called a Nisen(not sure of the spelling). The nisen is to help control her reflux. She has been throwing up periodically troughout the last couple weeks. The surgeon told Laura he was glad they did the nisen because Maddie's stomach was swolen when they saw it from all the reflux. She will be in ICU all day Thursday and will remain in Duke Hospital for a couple more days for monitoring. Hopefully Laura, Gay and Maddie will be able to come home sometime late next week. Taylor has been a little frustrated about mom being gone for so long. I am also frustrated about not being able to be there with them. I had to stay home and try to run a business and be there for Taylor. His grandpa (AL) has been taking care of Taylor this past week. His Grandma (Nancy) is also coming this week. Laura and her mother (Gay) have been at Duke the past two weeks. We would be in big trouble without all the grandparents to help us out. As for now Maddie has done well with the surgery. We will know more over the next couple of days. Once again thank you to everyone at Duke who have been so wonderful to us and Maddie. Also thanks for all the wonderful additions to the guestbook.
Peace and Love,
Jason

Saturday, September 07, 2002 at 08:06 AM (CDT)

We have come to a decision for now. Laura and I decided on Thursday that Maddie was in too bad of shape to receive the transplant. Dr. Kurtzberg and her team at Duke are some of the most special people we have ever met. They are trully there for the kids and families. Our job now is to keep Maddie as comfortable as possible and put this in god's hands. The support and love we have received during this time has been incredible. Maddie will still be at Duke through this week receiving her G-tube so we can get that awful tube out of her nose. We know now that we took Maddie to the best place in the country for what she has. I want to encourage everyone to raise some awareness about Krabbe's disease. It is getting misdiagnosed often in children. If it is detected early after birth these children have a good chance of being saved. It can be detected with a simple test at birth. Hunter's Hope Foundation is working with some doctors on getting funding for a heel prick test to be developed to catch this at birth. If it is caught at birth the chances of a transplant are so much greater. There is a hour long special that has been running on The Discovery Health Channel called Cord Blood, Chance at Life. This story is about Dr. Kurtzberg and her work. Watch it if you can. Laura, Taylor and I can not thank everyone enough for there thoughts, prayers and support.
PEACE AND LOVE,
Jason, Laura, Taylor and Maddie

Thursday, August 29, 2002 at 08:26 PM (CDT)

WE HAVE BEEN AT DUKE SINCE SUNDAY NIGHT. THIS PLACE IS REALLY INCREDIBLE. WE HAVE BEEN RUNNING TESTS ON MADDIE ALL WEEK. tHE RESULTS OF MOST OF THEM HAVE COME BACK BETTER THAN WE EXPECTED. bUT WE ARE STILL WATCHING MADDIE DECLINE A LITTLE. THE DECISION TO DO A TRANSPLANT IS PROBABLY GOING TO BE LEFT UP TO US AS A FAMILY. BUT IT IS NOT THAT EASY OF A DECISION. THERE ARE MANY RISKS INVOLVED. WE WILL HAVE TO DECIDE BY NEXT THURSDAY. THIS IS THE TOUGHEST DECISION OF OUR LIVES. I HOPE WE HAVE THE STRENGTH TO MAKE A GOOD DECISION. I AM CALLING WHAT WE ARE GOING THROUGH BONE MARROW TRANSPLANT BOOT CAMP. SLEEP HAS BEEN A VERY LITTLE THIS WEEK. MADDIE HAS BEEN UP MOST NIGHTS FOR HOURS, EVEN WITH MEDICATION. IT HAS CERTAINLEY BEEN A GREAT EDUCATION. I WENT ON THE TRANSPLANT UNIT TODAY. THAT WAS REALLY EYE OPENING. I HOPE EVERYONE WILL UNDERSTAND AND SUPPORT OUR DECISION.
PEACE AND LOVE,
JASON, LAURA, TAYLOR AND MADDIE

Friday, August 23, 2002 at 09:47 AM (CDT)

Well it has benn an emotional week for us and Maddie. First of all hearing of Brittany's passing and realizing the true effects of this disease. Then Maddie has been a little sick with a cold. But we are heading to Duke on Sunday to meet with Dr. JoAnn Kurtzberg. They want to do some further testing and discuss a possible Bone Marrow transplant. Maddie will have to be there initally for about an week and a half. If we decide to go forward it could be up to 6 months. The fear of how we are going to handle this is starting to set in. Emotionally, Spiritually, Financially are going to be tremendouslly tested during this time. But we are ready to fight. Please keep Maddie and the doctors in your prayers and thoughts as we await the results. I will try to keep unpdated while at Duke as best as possible. Once again thanks to everyone for there encouraging words that have been sent to us. It is trully amazing the support going on for Maddie during this fight for life.
Peace and Love,
Jason, Laura, Taylor and Maddie

Wednesday, August 21, 2002 at 04:22 PM (CDT)

This is our first entry on Maddie's website, so be patient with us!!!! We have been inspired to do this by the Walters. We will continue to update on Maddie's condition through the site.
Peace and Love,
Jason, Laura, Taylor and Maddie

Click here to go back to the main page.

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