Skylar is on her way to Miami!

06/15/01

The liver was damaged. Skylar and Marquette will stay in Miami so they can watch Skylar closely. Her condition is deteriating quickly. Pray for Skylar and Marquette.

06/16/01
12:30 a.m. EST

Skylar is in surgery!

7:15 a.m. EST

Skylar is in stable condition. They are just now removing her liver. Pray for both Skylar and Marquette.

06/17/01
7:00 a.m. EST

Skylar made it through her 13 1/2 hour surgery. She is in critical but stable condition. Doctors are concerned that she ran a steady 101 degree temperature through surgery. The first week after a transplant is the most critical. The biggest concern is infection, rejection and bleeding. Skylar will remain in pediatric ICU for 3-5 days before moved to her room.

Marquette will get the hospital address if anyone should want to send something to Skylar. Please do not send fresh flowers or fruit. She can't have either.

06/18/01
3 a.m. EST

Skylar is getting a blood transfusion tonight, still very swollen. Her right upper lobe in her lung collapsed. They are doing everything they can to re-inflate it without inserting a lung tube.

She actually talked to me tonight and opened her eyes for a second to look at me. She said Mummy pick me up please... I cried but the nurse helped me hold her on my lap and she went back to sleep. It felt wonderful :)

I'll send another update later... Marquette

P.S. Still concerned about possible infection and temps but they are watching her very closely.

Hi Everybody,

Well, tonight Skylar has taken a few baby steps backward. When we got to the Peds Intensive Care Unit this morning Skylar actually looked a little better to my husband and I. But we were told they are still concerned about her lung and the main artery. Because her veins were so small they had to split the main artery vein to make it larger. One side is doing great the other looks like it may clot which is not good! They gave her more plasma tonight because her blood was too low and so many other drugs I have to write them all down to remember them. They are also trying to tank her up again on the IV fluids so she will be swollen again when we arrive in the morning. Just came back to the apartment for a shower and a quick nap. The fluids and Heparin will keep the blood thin so the vein has a better chance of not clotting. She has bruises everywhere and her eyes are swollen but she is still my sweet Skylar. She is hanging in there. Thank you for all the prayers..

God bless you all,
Marquette

06/20/01
7:30 EST

Please everyone we need you.... Skylar has been rushed back to Emergency Surgery, she is bleeding in the abdomen. She is critical!!!! WE NEED YOUR PRAYERS!!!!!! Please Lord don't take my baby after all she has been thru please.....She is at Miami/Jackson Memorial Hospital in Miami, Florida.... Thank you for the prayers!!!!!!

Marquette (Skylar's MUM)

12:30 p.m. EST

Skylar is out of surgery. They were able to stop the bleeding, the liver is not damaged and she is still in critical but stable condition in Pediatric ICU. Skylar has had 6 transfusions and they removed a liter of blood from her abdomen.

5:00 p.m. EST

The doctors have removed some of the tubes from her body and Skylar's normal color has started to return. She is still running a temperature and is in a lot of pain. Thank God she is making some progress, a little at a time. Keep praying for her and her mum.

06/22/01

Skylar is still in a lot of pain. They are trying to provide enough medication for the pain without putting her to sleep. Skylar spoke today. The nurse was playing 'HipHop' music. Skylar said "no moosic, no moosic". Marquette asked, "what's wrong, don't you like the music?". Skylar replied, "no". Marquette then asked "what would you like to listen to?". Skylar replied, "Cwaig and Faith" (Craig Morgan and Faith Hill are her favorite artists). Marquette put on Skylar's favorite cd's and she settled right down.

The Leaf Chronicle (newspaper in Clarksville) printed an article about Skylar today in the local section.

06/23/01

Skylar has been moved from Pediatrics ICU to Post Transplant Surgical Unit (PTSU). All lines have been removed except for 2 main IV lines in the jugular vein on the left side of her neck. She is no longer in critical condition. She is not in stable condition, they are still watching her closely for clotting. She should remain in the hospital for another 9 to 10 days.

Skylar is sleeping peacefully for the first time. She is smiling, talking and even hugged her baby doll.

Cards can be sent to:
Skylar Haynes Room 6067
East Tower 6A (PTSU)
1611 NW 12th Avenue
Miami, Florida 33136

Please continue praying for her progress. Thank God and God bless you all for your prayers and support.

06/24/01

Hi Everybody,

Skylar is doing wonderful today. She actually walked around the hall a few times. She was crying very quietly but when she got back to the bed she smiled. It was all I could not to cry myself so I gave her a big smile back. She is finally sleeping and hopefully will have a good night.

I want to thank all of you for praying for Skylar. I know in my heart the Lord heard your prayers and saved her when she was bleeding. That was the scariest time of my life. To watch Skylar go thru all this and then not make it, was impossible. Sometimes... we don't always understand the Lord's plan but He is always there.

God bless you all and thank you for caring about my Skylar.

Marquette Haynes (Skylar's Mum)

6/26/01

Hello Everybody,

just a quick note to let you know about Skylar's progress. Well, the last few days she seems a little depressed and has really missed her sisters. So the Doctor let her go to Mickey Dee's today. I wheeled her into McDonald's in a wagon and a mask on her face, it was so cute. Afterwards, we had to come right back because they were changing the bandage on her incision which has become infected in one area.

They are still concerned about her hepatic veins clotting and are doing an Ultra Sound everyday until they are sure it won't clot. She has also been walking around the hall at least once a day. She cries because of the pain and is hunched over as she walks but she does it anyway. That's my little fighter. Thank you all for the prayer... God bless you

Marquette Haynes (Skylar's Mum)

06/28/01

Skylar may get to go home on Tuesday or Wednesday, depending on the condition of her incision which has become infected. She is no longer running a temperature. She will have a home care nurse come twice each day to give Skylar her IV medications.

Skylar and Marquette will be staying in an apartment in Miami near the transplant center for the next couple of months.
Here is the address:

Skylar and Marquette Haynes
The Summit Aventura
3040 NE 190th Street #312
Aventura, Florida 33180

06/30/01

Skylar is experiencing mild rejection. It is not serious yet, still treatable with medication. If liver enzymes are still high tomorrow, they will do a liver biopsy.

The infection in her incision is better, it is drying up some.

Thanks for all your prayers and cards. Skylar loves getting mail and the cards really cheer her up. God Bless you.

07/02/01

Skylar is doing very well. She is out of the hospital. Marquette and Skylar are staying in an apartment in Aventura, just outside of Miami.

A nurse will come twice a day for cleaning her incision and giving her IV medication. They will be staying in the area for up to two months in case of any surprises with Skylar's health.

A "Thank You" to Matt, Maria, Misty and Jessie for raising over $1400 at the bake sale in front of Wal-Mart last week-end.

Thank you also to all those who have made a donation to Skylar's account. Every dollar helps.

God bless you all !!! Thank you so much!!!

07/07/01

Skylar had blood test done on Thursday, all liver function levels are good. Her incision is still infected. They removed 5 of the staples do to the infection.

Overall, she is doing well. Her father and sisters are coming to visit this weekend. Hopefully, this will bring up her spirits. Doctors are concerned that her spirits have been down which can affect her recovery.

07/19/01

Skylar only had to spend 2 1/2 days in the hospital. They got her medication balanced and she is doing very well.

Skylar is home in North Carolina for a temporary visit. They flew home on Tues., the 17th and will stay until Sunday, then return to the Miami area. She is thrilled to be home again.

07/30/01

Skylar is doing wonderful. Tomorrow she has her blood labs and sees the transplant team for an evaluation. She may be able to go home. A nurse will come every 2 weeks for her IV medications and Skylar will see a pediatrician for weekly blood draws.

N'Sync sent 5 tickets to Skylar. She will take her 9-year-old friend, Christine with her (the girl who had two kidneys and liver transplant).

08/10/01

Hi Everybody,

Many of you have been asking about Skylar so I thought I would give you a update. Skylar is doing WONDERFUL!!! You would never know this is the same little girl who went thru 8 operations prior to transplant and 1 emergency one after transplant at 5 days out. It's so great to see her swimming in the pool with her sisters, eating, playing, and most of all, laughing. She is taking a lot of different medications about 18 doses a day and does it without complaint although there are a few she makes a funny face after taking because she hates them :) But overall, the Lord has been good to us and we are very blessed to have Skylar still here with us.

I wanted to walk you thru the first days after transplant. For those of you who don't know her, Skylar will be 3 years old on the 24th of August. She was listed for a liver transplant on April 20th 2001 in Miami, Florida and received the call on June 15th.

The first liver Skylar was offered was damaged but we didn't know that until we had taken a lear jet Medflight to Miami. We arrived about 11:00 p.m. in the ER to find all the Doctors standing there waiting for us so I knew something was wrong. They told us the liver was damaged but after examining Skylar they wanted us to stay in Miami and wait. We stayed in a hotel that first night and found an apartment with Robin and Fred Ashmore's help the very next day. It was a wonderful blessing the apartment was 25 minutes from the hospital in a safe area of town.

We spent the morning getting supplies for the wait. At about 4:30 that afternoon (we were on our out way out to the pool for a swim) the call came again. We had 1 hour to make it there. It was rush hour traffic but my husband flew to the hospital, where we waited to begin. Fred and Robin Ashmore met us there, we were all so nervous but each trying not to show it. Skylar was laughing and taking pictures not knowing what was about to happen. She fell asleep just before they came for her so she won't remember being wheeled into the operating room. I was really glad she did. Fred, Robin, my husband Roy and I followed her down to the OR that was about 11:30 PM, we were not to see her again until 2:30 p.m. the next day.

At about 2:15 p.m., Dr. Kato, the surgeon, came walking down the hall with a big smile on his face...I remember running to him crying and hugging him. She was doing great there were a few problems, a temp and some difficulty finding an IV site. (Skylar had 7 IV's, 3 in her neck, one in each arm and both legs).

The first time I saw her I was so overwhelmed I started to cry, so did my husband. Nothing prepares you for how they look when you first see your loved one. Skylar was swollen everywhere, her tongue was so large it didn't fit in her mouth, her eyes were swollen shut and her little body looked so big it was tight to the touch. But I knew it was going to be ok the Lord was holding her hand thru it all. Skylar would smile again I knew it.

The next few days she made slow progress, off the ventilator on the second day but her throat was sore she couldn't talk to us just tried to open her eyes that were still very swollen. On the third day she could open her eyes enough to see me and asked me for the first time to hold her. I cried as the nurse helped her to my lap so did Skylar. I knew it was painful for her but she wanted to be held. It felt wonderful!!!

On day four she was sitting up in the chair by herself but crying a lot because she said her belly hurt. That's when I noticed her belly was bigger after transplant than before. I started to get concerned. She was very uncomfortable and the morphine was not helping. I knew something wasn't right. The nurse and I watch her closely all night.

At 5 a.m. I told the nurse I was going home for 2 hours to shower and change and I would be back. By the time I got to the apartment I was so tired I laid on the bed for 30 minutes before showering. At 6:15 a.m. the phone rang it was the Doctor. Ms. Haynes he said "we have an EMERGENCY", I need to operate. I can't wait for you to get back here to sign the form I need to operate Now!!!! Do you understand???" I said YES DO IT!!! The nurse than told us what was happening. Skylar was bleeding and they needed to stop it right away.

My husband and I raced back to the hospital for Skylar's secon surgery in 5 days. 4 of the longest hours went by before we saw the Doctor again. We were waiting with Julissa, Skylar's nurse in PICU. Skylar was still in surgery being closed but was stable AND WAS GOING TO BE OK. I think I breathed for the first time in hours. He first hugged Julissa the nurse and than told us it was Julissa who had saved Skylar's life. She had noticed the bleeding the minute her shift had began. "Minutes more" he said we could not have saved Skylar due to the fact she had already lost over a liter of her blood. A small child only has about 3 liters......I got down on my knees after hugging them both and starting thanking the Lord for keeping his promise and keeping Skylar safe.

We are home now in North Carolina awaiting a new brother or sister for Skylar and her sisters, due sometime in February....But now you see why it's so wonderful to see Skylar laughing and playing. We are 6 weeks out and she is acting like your normal little child. There have been many tears thru this ordeal but now they are happy ones. Her liver numbers are great and although there will be bumps in our future it looks like smooth sailing from here.

God bless you all and thank you for letting me share,

Marquette Haynes (Mum to Skylar)

8/30/2001

Greeting from Skylar's House,

I know it's been a few weeks since our last update but we have run into a few bumps in the road with Skylar. For the last 2 weeks she has had a running nose, an ear infection that would not go away and vomitting off and on. She had surgery this morning to remove her ear tubes, they were causing most of the problems. One tube was clogged with blood and the other had scar tissue in and around it. Hopefully, removing them will help her ears to heal. Bless her heart she kept telling me "her ears were not working." In spite of the few problems they are not affecting the new liver. It's working wonderfully.

She also celebrated a big day this pass week, it was her birthday, August 24th. She is now 3 years old. Wow, I still can't believe it but I'm so thankful to all our friends and family who never stop believing that Skylar would make it thru all this. It's been 9 weeks since her liver transplant and, other than a few bumps (none we can't overcome), she is doing wonderfully.

I want to thank all of you for the prayers and continued support for Skylar. The Lord has exciting plans for her and I can't wait to see it happen. Thank you for coming to visit, we'll see you next Friday the 7th of Sept. for our next update.

Until than god bless you all......Marquette Haynes (Skylar's Mum)

09/09/01

Hi Everybody,

Skylar is in the paper today. Since I know many of you won't be able to read it, I rewrote the article for you below. They did a great job in my opinion, tell me what you think?........Oh by the way GUESS WHAT I don't have chickenpox it was a heat rash :) :) YEAH!!!!!!

There is a huge picture of my husband holding Skylar and me looking on smiling. The Article reads...GIRL SURVIVES LIVER TRANSPLANT!!!

Asheville--Marquette Haynes saw how the power of prayer and other support from people throughout the world helped save her 3-year-old daughter's life when she seemed destined for death. Now this grateful mother feels it's her turn to give back what she can, which, in this case, is knowledge and passion.

Roy and Marquette Haynes's daughter Skylar, who turned 3 on August 24th, survived a liver transplant on June 17th, following nine surgeries before the transplant and one five days afterward. The toddler was born with Alpha1 Antitrypsin Deficiency, a genetic metabolic disorder that attacks the liver and lungs.

There have been numerous fund-raisers by friends and supporters to help defray the nearly $100,000 in out-of-pocket medical bills their family is facing. Thousands of people worldwide have visited Skylar's website (www.rdwebworks.com/skylar) and sent along their good wishes. Members of the Haynes church Biltmore Baptist, have encircled the family with prayers and love.

But it is another Mother, in Florida that Marquette Haynes most wants to celebrate- the mother of Amber, a 3 year old who drowned with her 4 year old brother in a backyard swimming pool just as Skylar's own liver was failing.

It is Ambers liver that now lives on inside Skylar, who is expecting to grow up healthy because Amber's mother was willing to give the gift of life, even in the midst of unspeakable grief at losing her only two children. Skylar is now cured of Alpha1.

With Skylar in stable condition, her mother is eager to help other families facing the same crises.

"I want to raise Awareness, to ask people to be donors to save lives", Haynes said from the south Buncombe County home she shares with Roy and their other daughters Jenee, 14, and Makayla, 5.

"A parent cannot imagine donating their child's organs, but if they only knew how many children they could save...the little girl and boy that drowned together, they saved 8 children, which, to me, is incredible. That this mom, in her time of grieving, actually thought about saving the lives of other children when she could not help her own," Haynes said.

In addition to speaking publicly- and passionately- in support of organ donation, Haynes also has been speaking to medical students, nursing students and others who will listen, about the Alpha1 disease, which she said is often misdiagnosed.

"Part of what I do, I talk to new doctors or students who are coming into the medical professions, who want to learn about Alpha1", she said. I'm coming from the perspective of a parent whose child has had a transplant, and has had a disease, and knows what to look for. It can attack children and adults, and there is not pattern to the disorder yet, but one in four Americans are either carriers or actually have it.

"If there is anyone who would like me to tell Skylar's story...I don't do this for money. I do it to help Skylar and anyone who might have this disease and it's undisgnosed," she said. "If I save one life, I did what the Lord wanted me to do."

This is printed in the Asheville North Carolina Citizen Times Today Sept. 9th, 2001. I also gave the Alpha1 1 800 number for more information.

9/29/2001

Greetings from Skylar's place,

I know this update is late in coming. I'm sorry to say that Skylar has not been well. Her ears are still bleeding off and on with no warning and she has been vomiting as well. The Doctors believes that she has Acid Reflux again. After she gets sick she feels better until she tries to eat or drink something, then everything starts over. She is on a great deal of medication both for transplant and for the Acid Reflux. But it does not seem to be helping. So Skylar and I are heading back to the hospital in Miami for a upper GI series and further testing to determine if they will need to operate to fix it. I'm hoping they will not have to operate but it may be the only way to relieve her pain. This is not the first time Skylar has had Acid Reflux. She had a operation in Jan. 2000 called a Nisanfundiplication. It's where they wrap the bottom of the esophagus to keep the acid from splashing up from the stomach. It took 10 days for Skylar to recover but she was only 13 months old at the time.

She also has an abscess or something growing on her incision they want to take a closer look at it as well. They may need to remove it, we won't know until after the Transplant Team has examined her. All in all these are all little bumps in the road. Nothing compares to the liver transplant which was the most difficult time but I'll be glad when she is feeling better again. The Transplant team told us to expect some minor problems afterwards so we are not worried. And I know in my heart the Lord is always with her.

I want to thank all of you who have continued to visit Skylar's site and pray for her daily. It means so much to us. I also want to thank Ms. Williams, 5th grade class for making it possible for Skylar to go to DisneyWorld for her WISH, Nov. 11. Ms. Willaims and her class are partners with MAKE A WISH. They have been doing the fundraising to make Skylar's wish come true. The kids are having a Fundraising Dinner Nov. 8th at Asheville Catholic School in Asheville, NC. They will be serving a Mexican meal catered by La PAZ's, a local Restaurant. Hope to see you all there.

I will not update her site again until we return from the hospital in Miami. We may be there only a week or two but when I return I will post an update right away.

God bless you and thank you for your prayers and support,
Marquette Haynes (Skylar's Mum)

10/15/2001

Hi Everybody,

I have promised all of you this update for a week now but I haven't been on the computer much, sorry.

Wanted to share with you Skylar latest experience at the hospital a week ago in Miami. If you remember they were looking for the cause of her vomiting and the abscess on her transplant incision. Well the mystery is solved!!!! She had a yeast infection at the bottom of her esophagus. VERY GROSS!!! Thankfully, she didn't need surgery to fix the reflux only a new medication and she is on the mend. The abscess on her incision was actually a inner stitch that became green with infection as it worked it's way to the surface of her skin. They did operate to remove it but there are others they could not reach at the time and will need to be removed as well. So far 2 more have come to the surface this week and will need to be cut out.

The testing was the worst part of our visit. I want to share this with you for future reference for children who may need this procedure done. They did a upper GI on Skylar the second day. Skylar is only 3 so please keep that in mind.

First they did NOT come for her until 2:00 pm in the afternoon that's a long time for a 3 year to be without food and water. Next, the contrast you are expected to drink is terrible so Skylar could not drink it without vomiting. They had to insert an NG tube down her nose into her stomach WITH NO SEDATION!!! During the procedure, because I am pregnant, I could not stand next to her but could watch thru a window. They strap her down with her arms above her head like a mummy. She started screaming "Mummy please save me, make the bad people stop"...it was awful. The NG tube fell out 4 times and had to be reinserted each time. There was blood running from her nose and mouth. I will NEVER let them do this again without sedation and would NOT recommend it any other way for children.

When it was over she held onto me so tight, we were both crying. The Doctor was very shaken up and told me he will never try it again without sedating the child. It was one of the worst experiences she has ever been thru and Skylar has had 11 operations so far including her liver transplant on June 17, 2001.

ONTO OTHER NEWS:

Skylar was chosen by the MAKE A WISH FOUNDATION for a series of commercials for North Carolina. (For those of you who don't know who they are it's a foundation for chronically ill children. They grant each child under the age of 18 a wish. Skylar will be going to DISNEYWORLD on Nov.10-15. Anyway.. she will tape them tomorrow afternoon along with 2 other wish kids :) They will be showing them thru the month of November all over NC on channel 13. We have also been asked to do a few radio spots as well. I thought it was kind of neat. She has become quite a little spokesperson for Organ donation and ALPHA1. I believe the Lord can take a difficult experience and make it into something good.

God bless you all and I look forward to hearing from you again,

Marquette Haynes, 5 months pregnant with 4th child and Mum to Skylar a beautiful 3 yr. old little girl transplanted with a new liver on June 17, 2001 in Miami, Florida after a 6 week wait on the list.

10/30/2001

Hi Everybody,

I wanted to tell you the latest from our house and wish you well at yours. Please be safe this Halloween or Fall Harvest :)

First I wanted to tell everyone that Skylar is potty trained!!!! Big news at my house since I'll have another in diapers soon. She was doing great before her transplant in June. But the transplant set us back a bit but yesterday she decided it was time!!! She took off her pull-up at 1:00 in the afternoon and has been going to the potty all by herself ever since than. I hide around the corner and watch since she doesn't want me to help. (laughing)

Next, many of you know that her incision has become a problem. We are not sure why but her internal stitches have been abscessing and becoming infected. She has already had one surgery to remove a few of them. Well there are 6 more abscesses all the way across her abdomen. So they have decided the best course of action is to reconstruct the incision. Cutting out all the old stitches and starting again. The transplant team will be doing the surgery sometime in the next month, I think. It's not an emergency but it will have to be done. This makes 14 surgeries for Skylar and that's not counting all the procedures. So I'm praying this is the last one. Please let me say that she is not in pain just very uncomfortable and tender.

The best news is on Nov. 10 we are going to DisneyWorld!!!! And Skylar is in for a special surprise!!! Brittany Christensen and her family will be going at the same time. (Brittany is a 12 year old little girl who had a liver transplant about a month before Skylar for Alpha1 as well). Brittany's wish was to go to DisneyWorld and meet Skylar. I think that is so sweet!!!! So we'll be spending a lot of time at the Ice Cream Parlor at the end of each day :) :)

Well...Hang in there everybody, the Lord only gives us what we can handle.....remember that. The Skylar's next update will be on or before the 9th of Nov.

God bless you all..Marquette Haynes (Skylar's Mum)

11/22/01

Skylar has returned from the hospital. Surgery went well. They had to reconstruct her incision by cutting out infected tissue along the incision. Skylar came home with stitches and three drainage holes. The stitches will be removed by a local pediatrician. Skylar is feeling a bit under-the-weather, but over all she is doing great. There will be a full update on Monday.

Happy Thanksgiving and God bless all of you,

11/28/2001

Greetings from Skylar's Hospital room......

Skylar is in the hospital and has been since last Wednesday!!!

Most of you know that we left for DisneyWorld on the 10th of November and were there until the 15th. In spite of running a low grade temp she had a great time. On the 15th we flew to Miami to the Transplant Center for an operation on her incision. Things seem to go well so we flew home late Monday night in time we thought for Thanksgiving.

We were home maybe 36 hours when she spiked a high temp and the incision looked like it had become infected again. So Wednesday I took her back to the hospital here in North Carolina. They admitted her right away and started her on IV medications in hopes of killing the bacteria causing the problem. By Saturday the infection had tunneled it's way across her abdomen under her skin and was making a mess. So they decided to operate again to remove it. She went into surgery on Sunday morning at 7:30. When she came back to the room we notice her incision had a slow drip and was bleeding out on her bandages. At the time we thought it was just oozing from the surgery and would stop.

By that afternoon Skylar was looking very pale and had soaked thru her bandages so they called the Surgeon in to change it. When he removed them we notice a steady slow drip coming from the incision. In hopes of stopping it they started giving her fresh frozen plasma. I thought it had worked but she looked so pale, I was worried.

At 10:30 pm she finally fell into a fitful sleep. I awoke to her calling me very quietly about 1:30 in the morning. She was so weak and looked terrible. There's was no color in her cheeks or lips and looked very white next to the sheets. I walked over to change her and see what was wrong. When I pulled back the covers I almost screamed she was covered in blood. It was everywhere, all over the bed sheets, her bandages and all the way up her back. I yelled for the nurse, she called the Doctor, the Surgeon and did a STAT CBC to check her blood levels. The surgeon came running into the room I swear the man lives in the parking lot in a camper he was here so fast. They rushed Skylar back into surgery.

After about 2 hours (5:30am) she was back in the room and they had stopped the bleeding. The surgeon, Dr. Walburg is amazing and a very kindhearted person, I can't thank him enough for taking care of Skylar.

She slept most of the following day and was in a lot of pain. On Tuesday morning after another sleepless night for me because I was so worried, they did another CBC to check her blood level. When the results of her blood work came back, it showed they were all dangerously low. The Doctor (Dr. Walter) decided she needed a blood transfusion right away. This time they gave her whole red blood cells. It seems to have helped!!!!

Although still a little pale she is looking better and color is returning to her lips. Once again Skylar has pulled thru like the fighter she is with the help of the Lord and all the Doctors and nurses at Mission Memorial Hospital in Asheville, North Carolina.

To the staff I want to say, although we may forget some of your names, your faces are imprinted in my mind forever and I thank you for taking such wonderful care of Skylar. God bless you all !!!!!!

We are hoping to be able to go home soon. It will depend on if she'll need more blood in the morning. I'll be in touch and let you know in an update again next week.....Hopefully by next Wednesday, I promise!!!

God bless you all. Thank you for the prayers and for caring about our Skylar!!!!........Marquette Haynes (Skylar's Mum)

12/6/2001

Greetings from Skylar's Place,

Skylar is finally home and doing so much better. Many of you know she received her gift of life, a new liver on June 17th. Well, for some reason she contracted a flesh eating bacteria in her incision. After 5 additional surgeries to correct the problem, I'm happy to say it's finally under control. The latest surgery was a week ago Sunday.

There was a complication from all the surgeries (3 within an 8 day period) and she started hemorrhaging. They had to give her 2 blood transfusions and operate again later that night to stop the bleeding but she is doing great now. Her color has return to her face and she is laughing with her sisters. Skylar never ceases to amaze me.

She went to have her stitches removed yesterday and I have to say, although big, the incision is beautiful with NO infection!!!! Dr. Walburgh did a fantastic job and we are grateful to him and the staff at Missions St. Joseph for all they did to help Skylar.

We are now looking forward to Christmas as I pray all of you are. Skylar will actually be able to enjoy it this year and I can't wait to see her eyes light up when she sees the Christmas tree and presents.

There have been many additional costs with all the surgeries and the anti-rejection medication she has to have everyday. But we have a lot to be thankful for, because Skylar is still here with us. In spite of the difficult journey to transplant and after, she has had 15 surgeries so far. I will say it again, it was all worth it!!! It's amazing to see her laughing, playing. And I would do it all again just to see her smile.

There may be some of you out there who are thinking of being an Organ donor and have not yet signed your card. I encourage you to be a donor and help save a life. I'm so thankful to the Mother who in the mist of her grief gave my child life. Saying "Thank you" to her will never be enough..........

I'll be updating Skylar's site again by Monday the 17th. Until than God bless you all and Happy Holiday!!!

Marquette Haynes (Skylar's Mum)

12/21/01

Hello from Skylar's Place

I know I promised you all an update on Skylar by the 17th but it never fails, I'm always a few days behind. I'm sorry to say it's because Skylar has pneumonia this time. It started with a croupy cough, a fever, and running nose. The Doctor put her on antiboditics but she is not responding to the medication. Her blood levels are dropping (showing she can not fight the infection) and she may have to be admittted to hospital if she has not improved by morning. We are going back to the Doctor tomorrow for more labs and Dr. Walter will decided what to do than. I will call Darlene the webmaster of Skylar's page to add to this update....God bless you all and thank you for the prayers.....

Marquette Haynes (Skylar's Mum)

12/22/01

Skylar has been admitted to the hospital in Arden, NC. She has Viral Pneumonia and Neutropenia. Normal White Blood Cell count is 5.5-15.5, Skylar's is 1.5 way too low. This means she has nothing to fight the viral infection with. She is receiving IV antiboditics and fluids to keep her hydrated but it's a waiting game from here.

I will try to keep you all posted and thank you for the prayers. This has been a difficult year for Skylar but she WILL get pass it.

God bless you and have a wonderful holiday,
Marquette Haynes (Skylar's Mum)

12/26/2001

As you all know Skylar was admitted to the hospital on the 22th. What we didn't know was she is battling more than one virus. Skylar has 4 different virues, Viral Pneumonia, Influenza B, RSV and Parafluenza. It's because her WBC (white blood cell count) has dropped so low she cannot fight off any infections or viruses. The Doctor let her go home Christmas Eve but told us we may be coming back into the hospital. We were happy to be with family even if it meant wearing a mask at all times. We are on are way for more blood work today and a checkup. They may have to re-admit her. I'll be in touch thru Darlene.

12/27/2001

We have wonderful news!!!! Skylar's white blood cell count (WBC) has come up to 3.5, normal is 5.5-15.5. The Doctor decided I could keep her home to recover unless there is another problem. She is still running a slight temperature, diarrhea, coughing, runny nose and wheezing when she breathes but she is making small baby steps of progress. Being here with her best friends (her sisters) really helps. She is wearing a mask at all times to keep her from any further infections. And it will be another week before she is feeling more like herself but at least she is home with us. Thank you for all the prayers!!!!

God bless you all and have a wonderful NEW YEAR!!!
Marquette Haynes (Skylar's Mum)

1/10/2002

Greetings from Skylar's Place,

I have a lot to share with you today. First, let me say that Skylar is doing much better. Still having some diarrhea but her liver numbers look great, so they are not as worried about her. She will continue to wear a mask thru the next 6 months or so to protect her from infections that will cause damage to her new liver. We will always have to be careful but the first year after transplant is the most critical.

The WONDERFUL NEWS is as of March, Skylar will be getting 6 adorable little false teeth to replace the 7 that were pulled last year due to Acid Reflux. We waited until after transplant to replace them for fear, of them falling out during the operation. She was so brave in the Dentist's chair as they filled one tooth and put a new silver crown on another, yesterday. I can't wait to see her with all her new teeth :)

Well if you have been keeping up with Skylar by now you know that Collin Raye is doing a Fundraising Concert for her on Jan. 24th. He is a very sweet man and it means the world to us he wanted to do this again. There have been many items donated by other Artists and local businesses to be auctioned at the concert as well. To all of them I want to say thank you for helping....and God bless you.

Skylar and I will be driving over for the event so I hope to see you all there. We have missed our friends in Clarksville since my husband got out of the military in Jan. of last year. We didn't really want to, but in truth getting out was the best thing for Skylar. She was listed for transplant the following April and received her new liver on June 17th, 6 weeks later. So the Lord does work things out for the good.

God bless you all and thank you for all your love and support.
Marquette Haynes (Skylar's Mum)

1/28/2002

Hello it's Marquette (Skylar's Mum)

Just want to update everyone on the fundraiser. First it was wonderful!!! Skylar had a GREAT time. Collin Raye, Kevin Sharp, Hometown News and the Billie Griffin Band were WONDERFUL!!! We were asked to come on stage when both Kevin and Collin sang so that was a real treat. Needless to say we had the best seats in the house :)

12,772.00 was raised from the event. There are so many people to thank, where do I begin. Darlene Noennig for organizing the concert along with Jennifer Poage. Hank Emrick for letting us use his club and giving all the proceeds to Skylar. For the all the Singers and their bands, the artists and businesses who gave items to auction and of course all the people behind the scenes who donated their time to make it run so smoothly. And for all of you who came to support us. God bless you all and thank you for caring about Skylar.

I will update again in a week.....God bless you and thank you,
Marquette Haynes (Skylar's Mum)

2/7/2002

Hello from Skylar's Place,

Well this has been a very busy week for Skylar. She had her monthly blood draw to check on her new liver this morning. I still don't have the results but I'll post them next time. We also had a visit to the surgeon earlier in the week.

I'm sorry to say we found another granulamona stitch bulging from her incision. Right now it's about the size of a walnut and hard to the touch. The surgeon, Dr. Walburgh will be operating again in a few weeks to repair it. I'm very scared for her to have another operation. Last time Dr. Walburgh had to rush her back into surgery because she started hemorrhaging. Her little body has been thru so much already, I'm really worried. But I know the Lord will be holding her hand and she'll come thru again. This will be the 7th surgery since her transplant in June and sixteen surgeries over all. She never ceases to amaze me.

I want to thank all of you who continue to visit Skylar's site and pray for her. It means alot to us that you care. I'll be asking for extra prayers during the time of her operation. When I know the date I will post it on her site.

On a happy note Skylar's new baby sister Kylee Morgan Haynes will be born by c-section on Feb. 12th. Skylar is very excited because she thinks Kylee is a gift for her from the Lord. You see, I found out I was pregnant with Kylee during the time of Skylar's transplant. And although a complete surprise we are all very excited about her arrival. Kylee makes 4 beautiful daughters for my husband and I :):)

Well thank you again for coming to visit Skylar it will be a few weeks from today before I update again. God bless you and keep you all safe.

Marquette Haynes (Skylar's Mum)

2/20/2002

Hello Everyone,

It's been an exciting 2 weeks since my last update to Skylar's site. She is doing well has the flu right now but hopefully it will pass.

Last time I posted I told you about the granulamona on her incision well she now has 3 obsess granulamona's that will need to be removed. I'm calling the surgeon again today for an appointment. I'll know more details later.

I don't understand why this keeps happening it's very frustrating to me. When I told Skylar she had to have another operation she just said "Ok Mummy". I don't think I could do all this with such grace. I'm actually mad that she has to do this again.

I made a promise last time she didn't have to have another surgery. I know I should not have done that but I wanted to make her smile and I was praying I was right. I just keep telling myself the Lord knows the plan and I need to focus on the fact that her new liver is doing wonderful and enjoy everyday...I'm trying.

Skylar's new little sister made her debut into the world on Feb. 9th by caesarean. Guess she decided not to wait until the planned c-section on the 12th. So Kylee Morgan Haynes, weighing 6 pounds 11 oz, 19 inches long has joined the family. Skylar and her big sisters, Jenee and Makayla are thrilled to have her here. They are even helping with diapers...for the moment (laughing).

Again... I thank you for coming to visit Skylar's site and for your continued prayers and support......God bless you all,

March 22, 2002

Greetings Everyone,

First I want to thank you all for being so patience regarding Skylar's update. It's been a long month and I have a lot to share with you. In the last update I told you that Skylar would be having surgery again because of an infection in her incision. Well the transplant team operated on March 12th in Miami, Florida. I'm happy to say it was a success.

As I've posted before when Skylar is scared she likes to sing to calm herself. Well on the day of surgery was no different. We were in pre-op when Skylar suddenly broke out in song. There were several patients and hospital personnel around when she began to sing rather loudly "Twinkle Twinkle Little Star". It was so sweet, when she finished they all clapped and she felt better. But I was crying, my daughter is a true gift from the Lord :)

The surgery turned out to be a bit more complicated than we thought. Skylar had 4 cists growing inside her abdominal cavity as well as several granulamona stitches. After removing all the stitches and cists they had to completely revise the incision cutting her all the way across her abdomen following the same path as transplant. They closed her using a type of glue and then put in over 75 to 100 metal staples. Believe it or not, it actually looks great.

A few days after surgery Skylar started to look pale. Daily blood work showed her blood levels had dropped very low and she was given a blood transfusion. (She has had about 12 or 13 transfusions since transplant). The next day she perked up and although in pain was looking a bit better.

Being in the hospital so often you get to know the other children awaiting transplant or recovering from transplant. Seeing several kids over and over again you become part of an unusual family but a strong one. Well, since November, four kids in our hospital family have died. Two sweet little boys not much older than Skylar (who's 3) and 2 young girls. One awaiting transplant and one who had her new organ for years when she went into rejection and could not recover. We will miss them but they will live on in our hearts forever.

This is a world I pray none of you ever have to enter. Watching your child or loved one wait for a donor organ that may never come, but clinging to hope that it might is very difficult. Skylar was blessed and received a new liver but others won't be. I want to encourage you to sign your donor card than talk to your family making your wishes known to them.

Every day I have with Skylar is a gift from the Lord I cherish. I don't know how long that will be but I promise it will be spent making memories that will last a lifetime.

Thank you for continuing to pray and support my daughter. It's because of you and the Lord that Skylar is still here in my arms to hold.

God bless you and thank you.......Marquette Haynes (Skylar's Mum)

3/13/2002

Hi Everybody,

I want to say THANK YOU to all of you for the well wishes and the prayers. I know the Lord is keeping a close eye on Skylar and he does hear you. :)

Let me share the good news first.....Skylar's surgery on the 12th. of March went great as you know from my last update. The staples were removed a little over a week ago and the scar is large but it looks great.

And now for the current news.....I took Skylar to the Doctor on Thursday because she had a running nose, vomiting and having partial seizures. (Skylar has Epilepsy for those of you who don't know on top of being a liver transplant recipient. She takes medication daily to control it but when she is not feeling well she will have a seizure). The Doctor took her blood and told me Skylar looked pale but because she seemed to be ok, let me take her home.

Well...On Friday I was going to my Doctor's appt. when Skylar started having a seizure in the car and throwing up. I quickly turned around and headed to her Doctor's office right away. When I got there the seizure was over and she was talking to me but very tired. They drew blood again but this time the Dr. Walter came back very worried and told me her blood count including her WBC (white blood cell) count were too low. She said from her labs she had a virus causing the partial seizures and vomiting and wanted to admit her.

After we were settled into the isolation room they came in to do an IV. Well as you know Skylar had surgery recently and her veins have not recovered yet. Finding a IV site was next to impossible. She was so brave but we were both crying after the fourth try on her HANDS and both FEET. Skylar was holding out her little arm and crying for them to "please stop". It broke my heart and the NURSE, so she asked the Doctor if we could wait to see if Skylar could drink enough on her own. Skylar smiled thru her tears and told her she would try.

We spent all Friday and Saturday in the hospital. Because it was viral and there was nothing they could do but monitor her, I asked to take her home. Dr. Walter told me it was ok but because her blood is so low and she is vulnerable to infection we can't leave the house. If we do she has to wear a mask. I'm taking her temp every few hours and watching for other signs incase she gets worse but so far she is doing ok. Skylar's baby sister Kylee (8 weeks old) is sick with the same virus. So I'll be running back and forth between them for a few days until everyone feels better.

I know it seems like Skylar is sick alot but having a compromised immune system makes it difficult for her to fight off infections of any kind. To us...these are little "bumps in the road" compared to having a liver transplant so we understand this is going to happen.

On to the FUN news...Skylar and I will be on KISS COUNTRY 99.9 here in Asheville, NC. April 16th in the 7:00am to 8:00am hour promoting Organ Donation and Alpha1 Awareness. Radio personalities, CARRIE HUNTER AND CHUCK IN THE MORNING will be interviewing both Skylar and I. They will also be playing a song written by Skylar's big sister, Jenee when she was 12 years old and telling the story. Hope you'll all tune in.

Until next time God bless you and thank you for your prayers,

Marquette Haynes (Skylar's Mum)

05/21/02 Skylar Needs Our Prayers

Skylar developed a low-grade fever, vomitting and diahrea a couple of weeks ago. Last week she was taken to the hospital in Miami where they found her bone marrow has stopped producing white blood cells. Source is unknown at this time. If she does not respond to the drug treatment to increase the white blood cells in the next few days, they will need to do a bone marrow biopsy. Skylar is in serious but stable condition. She has been running a fever of about 102 for the past couple of days.

I will post more details as soon as Marquette is able to get them to me.

Please, no flowers, she is not allowed to have them, but will love your cards.

Pray also for Marquette and Skylar's family. Marquette is very scared.

Darlene

05/29/02

The blood transfusion was unsuccessful and her body is not absorbing any nutrition. She is supposed to have more blood tests and a bone marrow biopsy today and tomorrow. Things don't sound good, so I'm keeping her in my constant prayers. Marquette sounds ok, but she says she has no excuse to sit and cry if Skylar isn't.
(message received from Jennifer)

The Collinators (Collin Raye fans) are auctioning donated items for Sylar's fund. For more info click here.

06/12/02

Hi Everyone,

In spite of everything, Skylar is cheerful. She appreciates her cards and gifts. Every time she opens a card she says 'somebody loves me'. Please continue praying for Skylar, her condition is still serious.

Marquette does not have her computer with her and is not able to send or receive email. They anticipate being there for several more weeks.

Marquette thanks all of you for your prayers. She knows they are in the right place and the doctors will figure it all out and she believes Skylar will pull through again.

I have posted the address to which cards can be sent at the bottom of the left column. Thank you all so much for your wonderful response and prayers. All your cards help keep up Skylar's spirits. The rest of her family were able to come to Miami to visit last week and she was thrilled to see her daddy and sisters. Skylar has a will to live and we can help keep up her spirit with our cards and prayers. Thank you so much. Pray for the doctors, that they will be able to find the answers. Pray for Skylar and her family. I have Marquette's phone number (I had lost it) and will be calling her to get updates to pass on to all of you.

Darlene

06/21/02

Hi Everyone,

Marquette and Skylar are staying at the hospital hotel and Skylar is now being seen as an out patient. A nurse comes everyday to give her a neupagen treatment (shots) to boost her bone marrow. Her blood levels are still too low.

Skylar has a four foot IV pole with her feeding pump attached weighing roughly 8 lbs. that she is able to push herself which enables her to move around independently.

The formula they are using to feed Skylar is Peptamen Jr. The insurance company has refused to pay for it. It costs $5 per can. Skylar needs 5 cans per 24 hours. It costs roughly $750 per month to feed Skylar.

They don't know yet when they can go home. Hopefully, in about two weeks. Despite everything, Skylar has not complained. She is singing, playing and joyful.

Thank you so much for all the cards. Cards should be sent to her home address in North Carolina. Skylar has received cards from all around the world - Thank you... Your cards are keeping her spirit up. Thank you for your love, prayers and support.

Darlene

July 1, 2002

Hi Everybody,

As you know Skylar and I are back from the hospital in Miami after being in for a month and a half. I want to say thank you to all the Doctor's and Nurses at Miami/Jackson Memorial for caring for Skylar. They have become family to us and truly care. God bless you!

I have so much I want to say so please forgive me for cramming it all in :)

The transplant team still doesn't know what's wrong with Skylar but they are treating the problems. First her pancreas has stopped producing a enzyme needed to absorb nutrition. I think it's safe to say her body was starving itself. She will be on pancreatic enzyme replacement therapy for the rest of her life. They have put in a feeding tube, a Gastric J Tube (it bypasses the stomach and feeds directly into her intestines). This is helping to keep Skylar alive.

We still don't know why her blood levels keep dropping even after 2 blood transfusions so she is on Neupogen for the next few months. They are painful shots that will be given by ME every Monday, Wednesday and Friday. We are going to see a Hematologist and a GI Doctor in Knoxville to continue her care. It's about 2 hours away from us but at least we won't have to go all the way to Miami every time we have a problem. Of course if we need to we'll go back to Miami. All in all she is cheerful and happy to be home.

Some of you already know the formula Skylar needs is not covered by my insurance so I have started a campaign to change that. I may only be a small wave in the ocean but I will feel better for speaking out against insurance companies who refuse to pay for vital nutrition to keep my daughter alive. She is on Peptamen Junior. Since she is fed 24 hours a day thru the GJ Tube (she no longer eats by mouth) She needs 5 cans a day at 5 dollars a can, 120.00 dollars a case. One case last 5 days so it's comes out to 750.00 month. It's completely crazy to think anyone could afford this!!!!!

I have called my Congressmen and have a appointment to see them with Skylar on Monday at 10.00 am. The reason we got in so fast is because his secretary grew up with my father-in-law. So they all know each other well :) Thank you Nancy Day!!!! I have also called channel 13, a few radio stations, the paper etc. I want to make a public appeal for other families with children on continuous feeds who have the same problem with their insurance company to make a stand with me. I am only one person but together we can make a difference.

I want to say a special thank you to John & Diane Walsh and the Alpha1`Foundation Staff in Miami. They came to visit us almost everyday bringing goodies and even doing my laundry :) Boy was that wonderful!!!! And to Robin Ashmore, my sister in Christ and much loved friend who came to visit in spite of all she had going. We love you!!!!

We are sad we were unable to be there at the conference in Washington DC. But we are honored the Alpha1 Association chose Skylar for the Inspirational Award. We share this award with ALL OF YOU who inspire us everyday to try harder to help with Awareness and finding a cure for Alpha.

Skylar received over 200 cards, letters, books and teddy bears from all over the world. Many from (Country Artist) Collin Raye's fan club members :) Skylar loved getting mail and knew that you were all thinking of her. Each time she received something she said "somebody loves me". It really touched my heart.

God bless you all and thank you soooo much!!!!!!!!
We are happy to be back among friends and family :) :)

God bless you......Marquette Haynes, Mum to Skylar... a beautiful little 3 and half year old who received her life saving gift of a liver transplant on June 16, 2001.

July 16, 2002

Hi Everybody,

VICTORY FOR SKYLAR!!!!

A few weeks ago I told you guys my insurance had refuse to pay for the formula (Peptamen Jr) Skylar needed to keep her alive. The cost was 750.00 dollars a month ....For those of you who don't know she has a 24 hour feeding tube in her intestines. She no longer eats by mouth she will try sometimes but she is not really interested. The tube is working well and she has actually gained 7 pounds in the last few weeks.

Anyway... my insurance company had said NO!! NO!! to any additional costs for enternal feedings. I was paying 120.00 dollars a case, every 5 days. Well after we returned home from the hospital in Miami I called my congressman. Within 24 hours I had an appointment with him and his aides (his secretary is a family friend so my wait was short).

I'm very HAPPY to say tonight we have a VICTORY!!!! Congressman Taylor and his staff not only got them to pay for the formula but to reimburse me for what we have already paid for!!! My insurance company (United) called this morning to tell us they were "sorry" and will be paying for the feedings. Thank you Jesus, Congressman Taylor, Martha Peterson, Nancy Day and all of your prayers for making this happen :)

This blessing could not have come at a better time since Skylar is having a few more problems. You already know her pancreas has shut down and is not producing the enzymes needed to absorb nutrition. Well she is now taking pancreatic replacement enzymes along with all her other transplant anti-rejection medications. On a good day that's about "22" doses and on Monday, Wednesday and Friday "25". I think Skylar feels like what's a few more when she takes so many already and still does it with a smile I might add :)

We are trying to come off the Neupagen she was taking to help her bone marrow produce white and red blood cells. It may be the cause of pain in her back and also making her walk different. Skylar never really complains because she has a high pain threshhold so it's difficult to tell. We will be seeing a GI in Knoxville, TENN. in the coming weeks to try and find out why this is all happening. In the meantime I want you to know Skylar is happy just to be around her family, even if that means pushing a feeding pole around 24 hours a day. We are doing everything we can to keep her smile in place.

I want to say thank you again to all of you who have continued to support us with your prayers and help with fundraising. Skylar's medical expenses will always be there but she is worth every penny and every day the Lord let's us keep her.

God bless and thank you again....Log on in 2 weeks for her next update...........Sincerely,

Marquette Haynes (Skylar's Mum)

August 5, 2002

Hi Everybody,

First I want to thank all of you for the cards you've been sending to Skylar she loves getting mail. At some point Darlene will add a picture of Skylar smiling over them all to her website. You guys have been wonderful THANK YOU!!!!!

And now the latest news about Skylar. Well, she seems to be doing well with the feeding tube. She has actually gained about 8 pounds bringing her up to 35 ...that's not bad for a almost 4 yr old. (Skylar will be 4 on August 24th). While she was in the hospital she had lost so much weight you could count her ribs from behind without touching them. It was so sad. It's great to see her with chubby cheeks and luv handles above her bum it's very cute :)

Her feeding pole hasn't slowed her down in anyway. She runs down the hallway pushing her pole in front of her chasing her big sisters. I take her off 3 times a day for about 45 minutes for a bath and a little play time but otherwise she is on it all day and night. When I take her off she jumps up and down shouting "I'm free I'm free". I hadn't realize how much those few moments of freedom meant to her until than. I now make a point of planning the active part of our day around her breaks.

The last few days Skylar has been running a low grade temperature (anywhere from 100.2 to 101.3) and vomiting. Being vulnerable to infection it's impossible to keep her healthy for long. Although it's nothing serious and will run it's course, we'll keep a close eye on her.

We were suppose to see a GI in Knoxville TENN.. but my insurance won't pay for a Doctor out of their network so we are trying to see a GI in Charlotte, NC. If that doesn't work, Skylar and I will be heading back to Miami for additional tests on her pancreas to find out why it stopped working. I don't think it will be an overnight answer, the important ones never are but at least at some point we'll know why it happen. Truthfully it won't change anything and she'll still need the pancreatic replacement enzymes for the rest of her life. But as long as her new liver is doing it's job...life is good.

A special THANK YOU to KMART and the ladies who made the fundraiser last week possible. To Country Artist, Collin Raye's Collinator's having a ON going auction for her and to my daughter Jenee's cell group from Biltmore Baptist Church for helping in the bake and yard sale this week-end. And to all of you who continue to pray and support Skylar with your love and prayers.

GOD BLESS YOU and THANK YOU again,
Marquette Haynes (Skylar's Mum)

August 17th, 2002

Hi Everybody,

Skylar was rushed to our local ER last week after my oldest daughter accidentally ripped her Gastric J tube from her intestines. Jenee was trying to pick her up and didn't realize she was standing on Skylar's tube. Jenee screamed when she saw what had happened. Skylar was in shock and didn't react right away but started crying soon after. They were in our church parking lot (one mile away) so they raced home to get me and call an ambulance.

We are so thankful to the Emergency crew for coming so quickly. The ER Doctor didn't know what to do so he called our transplant coordinator and she told him to put in a temporary foley cath to keep the tract open and to have it replaced first thing in the morning by a surgeon.

The next day I took her back only to discover the new tube would have to be special ordered and would take a few days. Skylar is allergic to latex and small so a non latex size 18 feeding tube was needed.

Well we were not home 24 hours when it was ripped out again this time by Skylar herself. The temporary tube was only in her stomach so we had to be careful until the permanent tube could be placed in her intestines. Skylar and Makayla were playing outside around our very small pool splashing each other when Skylar tried to avoid getting wet. She ran one way and the feeding pole went another. So back to the hospital for another temporary tube!!!

On Monday a permanent Jejunum tube was finally put in place so although Skylar is very sore she is doing better. So all in all the nightmare is over :) I know accidents happen but could we please stand in the NO MORE PAIN LINE for a while!!!!!!!!!!!!!

Oh..I wanted to let you know that Skylar's birthday is on the 24th of August, she will be four. I would love to see her flooded with Birthday cards. She loves getting mail. If you would like to send her a card our address is posted on her page.

God bless you and thank you for your prayers and support. I'll update again on the 1st of September.

Marquette Haynes..Mum to Skylar an adorable (almost 4 yr old) little girl who received a liver transplant on June 16, 2001 in Miami.

October 8th, 2002

Hello From Skylar's Place,

Yeah we are finally home from Duke Children's Hospital!!!

Skylar was admitted last Sunday the 29th of Sept. for 5 days for a complete pancreas evaluation. All the results are still pending but I should know something soon. For those of you who don't know, Skylar's pancreas is not producing the necessary enzymes in order to absorb nutrition. Without them her body would starve itself to death. She is currently on replacement enzymes and a jejunum tube was placed in her intestines in May to feed her. Although she still tries to eat by mouth she doesn't eat enough to keep a small bird alive.

This was our first visit after being referred by her Liver Transplant GI, Dr Mittal to Dr Treem and his team at Duke. Most of the tests performed went well. I think the only one she had difficulty with was the endoscope and colonoscopy when biopsy samples were taken. Skylar vomited blood after the procedure several times but seem to feel better later. (Secretin) a new synthetic porcine secretin recently approved by the FDA was used on Skylar to provide the most accurate diagnosis. To date a little over 700 patients have been given the drug. Dr Treem and his team felt Skylar was a good candidate for the study. I am anxious to see the results!!

I would like to thank the nurses and Doctors who cared for her during our stay. Mike, Sue, Jennifer, Dr Manousos, Dr Shah and of course Dr Treem and his team. Please forgive me if I forgot your name, you guys were all great! We especially liked future doctor, Tasha Tanhenco a second year med student. Tasha your going to be a wonderful doctor. Hang in there luv :)

Most of you who have met Skylar know she has never met a stranger. Well during our stay she was her usual sweet self. I think we shocked several hospital personal when they saw Skylar riding her IV pole down the hall. (Laughing) But most people loved it!! She received smiles from everyone anytime we went anywhere.

We will be going back to Duke on the 16th of October but I hoped to have something to tell you before then. Since coming home Skylar's red blood cells have dropped making her look pale and very tired. She is passing blood in her stools and has vomited pinkish looking blood on at least one occasion. She also developed a croupy cough and has been running a temperature off and on. Her blood labs were redrawn today and everyone is keeping a close eye on her. Skylar has been thru so much that sometimes it take her abit to recover but she always does.

Again, thank you all for your prayers, love and support. Without all the Doctors, Nurses, Friends, Donor Family and the Lord, Skylar wouldn't be here and still smiling.

For that....Thank you will never be enough!!!

God bless you,
Marquette Haynes (Skylar's Mum)

October 30th 2002

Happy Fall Harvest Everybody!!!
I finally have a minute to relax after an incredibly hectic three weeks with Skylar and her sisters. They have all been taking turns being sick.

First Kylee (8 and a half months) had strep and had to take medication for a week, then Makayla my 6 year old developed bacteria pneumonia and was home from school with chills, diarrhea, coughing, vomiting and very high temperatures for 10 days on medication, then Jenee my oldest had the flu with body aches, fever and chills over the week-end and now it's Skylar's turn to have the chills, diarrhea, coughing and a temperature!! The only real surprise is how long it took her to get it!

For those of you who don't know, Skylar has three sisters, two older and one younger. Since Skylar has a delicate immune system due to her liver transplant it's important they all stay healthy but sometime it's just impossible. All I can really do is TRY!

You know...my husband and I didn't even know we were carriers of the genetic disorder Alpha1 until after Skylar was born. And although we weren't planning to have any more children, Kylee Morgan has been both a blessing and answer to Skylar's prayers. She really likes being somebody's "big sister" and they are a comfort to each other while Makayla and Jenee are in school.

In my last update I told you about Skylar's evaluation at Duke Children's Hospital and that we were waiting for the results. Well I took Skylar back Monday the 28th for her monthly blood work and follow up. We still don't have all the answers but I'll tell you what I do know so far.

The results in Skylar's urine culture came back positive for the CMV Virus. This is a very dangerous virus because once in her system it will cause all kinds of problems with her digestive system and it may attack her new liver. They usually start transplant patients on IV Cytogam (Human Hemoglobin) right away but the CMV was negative in her blood. So they did another culture instead. Well Monday Dr. Treem told me the culture came back negative this time. I'm not sure he was truly convinced because he did a 3rd urine culture along with her blood work to be sure.

I need to say that we live about 3 and a half hours away from Duke. So any cultures done here, have to be put on ice and sent to Duke for work up. It's possible to get a false result if the culture gets warm in transport so taking another will made ME feel better.

Besides, IV Cytogam is really hard on the body. Last time Skylar had to have it was in May when she was so sick in the hospital in Miami. Her hair fell out in chunks and her bone marrow had difficulty producing white and red blood cells. So I would rather be safe than sorry.

Skylar is still running low grade temps, coughing and complaining her belly and back hurt today. The belly pain may be because Dr. Treem (GI at Duke) changed her feeds on Monday from 22 hours a day at 40 cc per hour to 16 hours a day at the rate of 55cc per hour. Skylar was so excited when she finally understood she would be off her feeding pole during the day. I have been slowly increasing her feeds at night to 55cc per hour but it will take some time. I'm hoping she be more interested in eating by mouth now. I don't think the feeding tube will come out for quite sometime but I'm praying it will at some point.

I took her in to see our local Pediatrician, Dr. Walter Tuesday afternoon because her temp was 101.2 on Monday night after our visit to Duke and she was coughing. I think she may have gotten a chill while we were there but I wanted the Doctor to see her to be sure. She said Skylar's lungs had diminished sounds on the bottom and a few crackles. She gave her a breathing treatment and told me to watch her closely and call her thursday. So I will continue to keep a eye on her.

The BEST news...I have saved for last!!! After the pancreatic evaluation the results are Skylar pancreas's IS WORKING AGAIN just not like yours and mine. It may take some time but under doctors care and with lots of prayers, Skylar won't need anything done to her pancreas.

So on this note I'll leave you again until our next update on or before the 9th of November.

Thank you so much for the continued prayers, love and support for Skylar. The Lord is listening..your prayers and mine are being answered.

God bless you....Marquette Haynes (Skylar's Mum)

November 18th, 2002

Season's Greetings from Skylar's Place,

As some of you know, Skylar and I have met our donor family. Since Thanksgiving is just around the corner, I dedicate this update to Skylar's donor, Amber Duffin and her family, for giving my daughter the precious gift of life. I know that I will NEVER forget seeing them for the first time. It was actually just 10 months after her transplant. This is how it all happened.....

Skylar's liver transplant surgery was 13 and a half hours long. My husband and I were so worried, neither of us talked for the first several hours. Sometime after 11pm, another parent came in carrying a television so we both sat down to watch. It was a few minutes into the news when a frail blonde woman, holding a picture of two beautiful little children, came on.

She was telling the reporter that Amber, her daughter, had been taken off life support that night, 24 hours after Tyler, her brother, and they would now be able to plan a funeral. She went on to say she had signed a consent form to allow them both to be organ donors.

I went numb when I heard her say that because Skylar had received the first call just 24 hours before. At that time, we were told the liver was damaged and could not be used. After examining Skylar, the transplant team said to wait in Miami until another could be found. All we knew regarding the donor was it had been a 4 year old little boy who had drown.

My husband and I quickly found a furnished apartment with the help of our friends, the late Fred Ashmore and his wife Robin. When the call came again 24 hours after the first, we were told Skylar's new donor was a 3 year old little girl who was believed to be a perfect match. We rushed to the hospital.

As the frail, grief stricken Mum continued to talk about her children, I knew she was the Mum of our donors. My husband and I both started crying as she explained what happen. While she was sleeping, Tyler and Amber had slipped away and gone outside. It was believed Tyler started playing in the pool first. After he fell in and was probably struggling, his sister, Amber, may have gone in to save him. Sometime later she had awoken to find them gone and began to look for them.

Her worst nightmare had come true when she found them both floating in the pool. She said she screamed as she jumped in and carried them to the side and began CPR. Taking turns with each child until a neighbor heard her screams and came to help. By the time the ambulance arrived, Tyler still wasn't breathing but Amber had a faint heart beat. She said they prayed for a miracle but knew in her heart they had already gone to see Jesus.

It still amazes me, after not being able to save her own children, she thought of someone else's. She said she felt comforted knowing that Tyler and Amber would live on in another child. By this time I was crying so hard I could no longer see her face but I knew it would be imprinted in my mind forever.

Hours later the lead surgeon came out to tell us Skylar had made it through the operation. I remember running down the hall and wrapping my arms around him. In hindsight this is funny because Dr. Kato is from Japan and very reserved. He told us it would be at least 2 more hours before we could see her in Pediatric ICU.

Seeing Skylar for the first time was a complete shock. I would never have recognized her if I didn't know it was my Skylar. She was very swollen, on a vent helping her to breathe with nine IV lines coming from her hands, arms, feet and three in her neck. I was so scared I didn't know what to say. I began telling the nurse about the Mum on the news that night and that we believed one of them may have been our donor. She didn't say anything but somehow I knew she thought so too.

It wasn't until the next morning, after the doctor's rotation, that it was confirmed for us. You see, during rotation you have to leave for one hour. When I returned, lying next to Skylar on the bed, was a newspaper article of the Mum we had seen on the television the night before holding a picture of her children. We never found out who left it there but to this day, I'm so thankful they did.

I carried the newspaper clipping around with me in my purse for 10 months before I finally decided to try and find them. In the article it gave the names and addresses of both the Mum and the Aunt. I decided it was best to talk to the Aunt first in case they didn't want to have contact with us. I called information for her phone number. There was only one so it had to be right. When a message recording came on the line, I hesitated only for a moment before explaining who I was and asked her to call me back.

3 days went by before I received a reply. Apparently, she had been away for the week-end and didn't get my message until that night. I was rocking my infant Kylee to sleep when the phone rang. My daughter Jenee came in the room with a look of surprise on her face as she told me who it was. I felt a peace come over me just before I said hello.

She said "Hi, I'm Kim, Amber's aunt". The next thing she said made me smile as tears began rolling down my face. She said "We have been praying you would call." I'll never forget that! She asked if I had a boy or girl who had received the donation. I told her about Skylar and seeing them on the television during her surgery. We both started crying when she said she knew the Lord would find a way for Amber to come back to them.

Once I was able to talk again through my tears, Kim asked if her sister Lisa (the donor Mum) could call and I said "Yes". Talking to the Aunt Kim was a lot easier then talking to the Mum at first. There were long moments of silence as Lisa and I cried together and she talked about the kids. She wanted me to know how much she loved them and how much it meant to know her daughter was living on in Skylar. She asked for a picture and I gave her Skylar's website. All the sudden she got quiet. I asked "what was wrong" and she said "I know who your daughter is".

You see, a week before, a friend of hers in North Carolina had heard about a little girl who received a liver in Miami on June 16th, 2001. He sent her the website and told her to log on and read about the little girl ........That little girl was my daughter, Skylar.

That's when I knew acting on my own and looking for them was the right thing to do. The Organ Donor's Association rules are to wait one year then write a letter and they send it to the family. If the family doesn't want contact, a letter is sent back from the association stating the families wishes. If the family does want contact, it's done by letter. The likelihood of meeting in person is usually very slim.

I told Lisa and Kim, Skylar and I would be speaking at a fundraiser on April 4th in Miami for the Alpha1 Foundation. We arranged to meet at the airport gate. During those weeks before our meeting, there were several more phone calls from Amber's Father, Grandparents, Aunts and of course from Lisa (the donor Mum).

For those who don't know Skylar, she is a bit shy when you first meet her and doesn't usually like to be hugged by strangers. Well, when we got off the plane, they were waiting outside the gate. I had told Skylar about them but she had never seen their pictures. To my amazement she walked right up to Lisa and said "Hi, I'm Skylar" and gave her a hug. There were several people walking by and some actually stopped to stare at the little girl wearing a mask, hugging a lady openly crying. I was too in awe of the situation to talk but Skylar seemed to know just what to say.

After the introductions and hugs, we sat down on a bench together. Lisa asked Skylar how she was feeling. Skylar said Ok and told her about the big ouchy on her belly. Lisa asked her if she knew what happened. Skylar told her she got a new liver. Lisa than asked if she knew who gave it to her. Skylar said "An Angel". Lisa's response was "Skylar, I'm your angel's mother".

That was a day, I know, none of us will ever forget. We have continued to keep in touch with them on a regular basis. For us it was a positive experience and I know the donor family was comforted knowing who Skylar is and having met her. I will forever be grateful to Lisa for making the decision to choose organ donation in her time of extreme grief and for helping to save Skylar's life. Saying thank you will never be enough Lisa, you have my heart.

To date none of the other recipients have contacted them. Lisa said her prayer was to meet just one who benefited from her children's death before it would all make sense to her. The Lord answered her prayers with Skylar.

As you can see, I have a lot to be thankful for this year and every year the Lord let's us have Skylar. I pray that sharing our story will help you make the right decision for your loved ones, if you're ever in this position. I encourage all of you to be organ donors if you're not already. My daughter received her gift but there are so many others dying while waiting for theirs. Please be an organ donor and help save a life.

God bless you and be careful this Holiday Season,
Marquette Haynes (Skylar's Mum)

1/8/2003

Hello Everyone welcome to Skylar's site,

I hope your holiday's were wonderful and filled with love and family. We were very happy to be together on Christmas after Skylar spent a week in the hospital. Three weeks ago Skylar had decided to pull a typical 4 year old stunt and poked holes in her feeding tube with a pair of nair clippers. When I went to feed her that evening it was almost like I turned on a sprinkler...(laughing). Formula went everywhere it was really funny but we both stopped when we realized it meant I couldn't feed her. And to think I was worried about scissors, I now know to keep everything sharp from her :)

After calling the doctor and Duke we arranged to have her tube changed. I drove Skylar down early in the morning and Patty changed it for us. Putting it in was a simple procedure but nothing Skylar does is ever simple so I should have known better. Within 24 hours Skylar's temperature spiked and had to be admitted to isolation for fear of further infection. She was in for 5 days on IV antibiotics and released Christmas Eve. We were all so happy to have her home with us, it made our christmas even better.

Since it was very sore, it took a few days for her to feel comfortable using it. And then about a week ago now, she jumped off the bed in the middle of the night forgetting she was attached to the tube and ripped the feeding tube hole a little. It started to bleed but after cleaning it up and getting a good look I thought it would be ok.

On Friday I took her in to let Dr. Walter see it and she found 2 very large lumps in her abdomen. Both are quite large and it could be as simple as a cyst or granulanoma but we need to be sure. The transplant team was notified and we will be heading to Miami on Sunday and she is scheduled for surgery on Tuesday (Jan 21) to have the lumps removed. Thru it all Skylar spirits are high and she is not afraid. I truly never stop being amazed by her. I will write again to let you all know what is happening. I'm praying it's something very simple and easy to fix.

I want to thank you all of you who continue to come back time and time again to support Skylar and my family with your love and prayers.

God bless you ....Marquette Haynes (Skylar's Mum)

2/20/2003

Hello Everyone,

Thank you to all of you who care so much about Skylar that you write to remind me to update her site. Since our last update Skylar has been struggling with a site infection around her new G tube, spent 2 and half weeks in the hospital in Miami and is just getting over pneumonia.

She has been having a horrible time ever sent the J tube (in the intestines) was replaced to a G feeding tube (in the stomach) and she developed an infection. In my last update I told you that we found two large lumps on her abdomen. Well they turned out to be large pockets of infection. We were flown to Miami where the Transplant Team operated to remove them. While operating they did find a few stitch granulonomas as well. Dr Kato expressing a little medical humor actually saved one for me in a jar after the surgery. GROSS!!!!

Due to the infection Skylar was left open after surgery. I was taught by the surgical team how to pack the incision with gauze and to dress and change it twice a day. As careful as I was the infection continued to get worse so my local Doctor put her on an antibiotic for an additional 10 days. Although she is healing now a few days ago we found two more lumps making it difficult to feed her through her tube. She is still sore so attaching the tube for feedings is a bit painful. We will continue to feed her for 14 hours a day at the rate of 35cc per hour until her own little body can do it alone. Don't know when that will be but Skylar never complains.

After seeing Dr. Walter today we will be leaving with her sisters for Florida to see the Transplant Team on Friday. I am hoping this time they will let my local surgeon remove them if they are more stitch granulonomas. Being away from my other children is always difficult, especially for Skylar and my youngest daughter Kylee who's only 1.

Well I have saved the most incredible news for last!! I told you Skylar, her sisters and I are going to Florida tonight. Well on Saturday the 22nd of February Skylar will have the honor of being the flower girl at her Donor Mother's wedding. Just knowing who they are has been amazing but to actually be treated as a part of their family has been wonderful.

I know our presence may cause many tears to be shed during the course of the day. Both of bitter sweet sorrow and joy at Skylar being there in the place of Amber. But Amber will always be a wonderful part of us. I know in my heart she is looking down from heaven right now smiling on her Mum and Skylar. And I believe she's happy....they found each other.

I want to thank you for your continued love and support of Skylar in her incredible journey since her liver transplant on June 16, 2001. Hope you'll visit us again soon.

Sincerely........Marquette Haynes (Skylar's Mum)

4/11/2003

Hello,

I know it's been a while since our last update. There have been many changes during this last month for Skylar, her sisters and I.

First Skylar has been having a difficult time with Micro Plasmic Pneumonia having had it twice in the pass month and a lingering cough to go with it. For a while we were passing it around until the Doctor finally treated everyone at once. She will also be having surgery again next Wednesday for two more cysts granulanomas found on her abdomen. We will not be going to the transplant hospital in Miami. Our local surgeon Dr. Walberg will be doing it for us here in North Carolina. This will be the 19th or 20th surgery she has had. After having so many I'm afraid I have lost count. When I told her about it she didn't even complain "Just said ok Mum we'll do it again". She is still being fed thru her feeding tube 14 hours a day. But we are happy to be off for 10 hours so she can play and not be restricted for a while.

We also have a new home address. That's why we were not online for the last few weeks to do her update before now. Skylar, two of her sisters and I have moved into a apartment together. Living with me during the week and seeing Daddy and Jenee every week-end. We have been doing this for quite some time now so it wasn't so bad to make the move.

The new address is as followed:
Marquette Haynes (Skylar)
1108 Platinum Court
Arden, NC. 28704

God bless and thankyou for your continuing prayers, love and support for Skylar thru her trials both during and since transplant.

See you again in two weeks..Sincerely, Marquette Haynes (Skylar's Mum)

5/22/2003

Hello and greetings from Skylar's House,

First let me say thank you to all of you who continue to keep Skylar and our family in your thoughts and prayers. God bless you!

Things have been going well in the pass 4 weeks. As you know from our last update Skylar had her 20th surgery this month. Our local surgeon, Dr Walburgh did a fantastic job removing two granulamona cysts and repairing her feeding tube site. He even gave her a great new MICKEY button (Gastric feeding-tube). This one is wonderful because she can hide it under her shirt, and no one even knows it's there but us. It also gives her more freedom to move around without the fear of catching the tube on something. She is still be fed for 14 hours a night and off during most of the day.

We recently found out that she has been accepted into the Kindergarten program for next year and will have a homebound teacher coming to our apartment. I can not tell you how much this means to her. Because of her immuno suppression, feeding tube and overall problems with vulnerability to infection since transplant. It was decided that public school was not in the cards for her. But she is SO HAPPY just to say I have a TEACHER that being here at home doesn't even matter!!

She also got to do something fun last saturday with the Asheville Assault TEAM. They are our Woman's Football league here in Asheville. The team is giving wish families free tickets to every home game and helping to support the kids.

Skylar was honored to be asked on saturday to do the coin toss. Since the game was at 7:00pm she was already hooked to her feeding for the night. We had to carry her feeding pole onto the field. But that didn't stop Skylar. With hands on her hips and whispering where only I could hear. She kept saying " I can't do it I can't do it." She was more than abit nervous I'm afraid. But when the team captains all came out to meet her in the center of the field that all changed. They were so great at making her feel welcome that Skylar suddenly changed her mind and said "OK where's the coin"? I could not stop smiling I was so proud of her. Even though she did toss the coin in favor of the other team (laughing).

I would like to thank Lynn Suttles, MAKE A WISH and the Asheville Assault Players for making that happen. By the way they WON!! We look forward to their next game and encourage others to come out and help support our MAKE A WISH KIDS and The TEAM.

Well bye for now..God bless you and see you again in a few weeks. Sincerely...Marquette Haynes (Skylar's Mum)

6/23/2003

Greetings to all and I hope your having a great summer!

Skylar has been doing all sorts of wonderful things. Her daddy and grandparents took her fishing over the week-end and she caught her first fish. She was so excited to tell me about it. I could just picture her jumping up and down with her fish wearing a mask and the smile hidden underneath! Priceless!!!!! It's really GREAT to see her try new things and getting out a little more.

In this month since our last update she has only been in the hospital twice. A few weeks ago she was in due to an infection in and around her feeding tube site. But I'm happy to say that has cleared and looks better now. She also picked up a upper respiratory virus from Kylee (her baby sister) but both came thru it well. Skylar ended up needed medication but after a quick trip to Dr. Walter she was on the mend.

Most of you already know Skylar has her blood drawn by Kimberly (her home health care nurse) every month. Her liver labs came back looking fantastic again this month and her new liver is functioning well. I just wish her pancreas would kick into gear and she could come off the feeding tube. Her transplant team and Dr. Walter, our local Pediatrician were hoping we could keep scaling her back until the tube was no longer needed but her reaction to no feeds during the time of healing from her last infection put a stop to that. They had to cauterize the feeding site with silver nitrate and I wasn't able to feed her by the tube for almost a week. Skylar was sweating, had a tummy ache, a bit sluggish but the constant diarrhea was the worst of it and she lost a few pounds. So for now I will continue to feed her thru her tube for 12 hours a night and encourage her during the day to eat by mouth.

This month has also been the reminder of a special memory for both Skylar and myself. First let me tell you on June 16th we celebrated Skylar's second anniversary for her Liver Transplant!!!! It was a bitter sweet day remembering the donor child Amber and her family, those we have lost who have traveled this journey and were called home too early and those who with incredible willpower, determination and the power of prayer made it thru....Skylar your still my Hero!!

So in loving memory of 3 year old Amber Duffin (Skylar's donor) Deanna Blackwell and Bill Golay a wonderful family friend who died of a heartache a few months ago. I wanted to share with you the power of the Lord and how he uses each one of us to pass a blessing onto another. This morning I received a beautiful lullaby written by Randy Moomaw for the memorial service of Bill Golay and it reminded me of a wonderful but all too short friendship between Deanna and Skylar.

We met Deanna during Skylar's wait for a liver transplant, she was also waiting for an organ. In fact it was Deanna's second chance at a better life having already had one failed attempt. The doctors were very concerned about her and were determined to find her not only a small intestine but a new liver this time in hopes of saving her life. Skylar loved to play with her. They were very close in age, Skylar being almost 3 and Deanna 4 when they first met. Their favorite game was "Barbie's" because they could do it while hooked to their IV poles and not have to move around too much. They were so funny often making me talk for one of the other Barbie's and happy to be doing something normal while in the hospital.

During that year and the one after Skylar's transplant we saw Deanna many times as Skylar went back time and time again to have more surgeries. When Deanna finally received the CALL for the second time Skylar had just had surgery again herself. Bless her heart she was so sore they had cut her completely across her abdomen again. But Skylar was determined to see her friend. She had me take her everyday to the Pediatric ICU to stand outside the double doors in hopes of seeing her.

You see you have to be a certain age to be in ICU and Deanna's bed was by the door. Whenever anyone would walk thru the big doors they would open just enough for Skylar to see her and wave hello. Deanna was in and out of consciousness most of the time but at one point she opened her eyes and asked about Skylar. Her grandmother showed her the card we had given to her just that morning. It had a big picture on it of the two of them playing Barbie's. Skylar had wanted to surprise Deanna with it when she came back to the transplant floor but since Deanna was still in PICU and knowing her 6th birthday was in a few days she wanted to give it to her early. I'm so glad we did...the Lord knew that would be special to both of them especially to Skylar.

Deanna had a terrible time after surgery and struggle for days to recover. Late that evening Deanna started bleeding out and was rushed back into surgery. The transplant team did everything they could to save her but there was nothing more they could do. She died a few days before her 6th birthday. I felt so terrible I couldn't bring myself to tell Skylar without crying so I waited to tell her.

In the meantime she had me take her down to PICU to see Deanna that morning. Pushing her IV pole and walking very slow she stood outside the doors waiting for them to open. It broke my heart but I didn't know how to tell her so I prayed no one would come thru the doors while we were there. On the 2nd morning I knew I could not do it again and had to tell her. A memorial service for Deanna was planned that afternoon and not wanting Skylar to find out from someone else I finally told her.

Skylar amazed me by not crying right away......Instead she said "Mummy don't cry Deanna didn't die, the Lord just gave her wings". She went onto tell me that Deanna was "the best barbie playing friend she ever had and they would play together again in her dreams". The tears just flowed after that.

I was so moved by her understanding of death I told the story to her family at the memorial service later that afternoon. There wasn't a dry eye in the room when I was finished but there were smiles thru the tears. Skylar in her innocence had given them a visual gift they could cherish and take out when a smile was needed.

The lullaby Randy sent to me this morning was so beautiful it was also about remembering loved ones we have lost in our dreams. Randy didn't know the story about Skylar and Deanna but he will after he reads this. Randy I hope it blesses you the way yours touched me.

Thank you, all of you for continuing to pray and care about Skylar and my family. May the Lord bless you many times today. And remember we don't lose our loved ones "The Lord just gives them wings".

sincerely.....Marquette Haynes (Skylar's Mum)

08/09/03

Hello Everybody,

For once I don't have any major issues with Skylar's health to report. I'm happy to say she has been doing really well! Our biggest excitement over the last month was an upper respitory infection that went away fairly quickly with the help of two cycles of antibiotics. She is still on the feeding tube 12 hours a day and has able to keep her weight steady. So all in all doing well.

I know I told you guys before that Skylar will be starting Kindergarten. Her homebound teacher Ms. Fagan will be coming twice a week to our apartment and will be reporting to her IN school teacher Ms. Ingle. They will work together thru the year to make sure Skylar keeps up with the class. She is so excited!! Her Daddy went out and bought all her school supplies for her. She looks really cute carrying it all around in her new backpack.

Our biggest news this month is Skylar will be 5 on August 24th. It's really wonderful to see her growing up in spite of all her past challenges and those we have yet to face. The Lord has truly blessed us many times over and we will always be thankful.

If you would like to send a birthday card our address is off to the left of her webpage. It would make her day to see the mailbox full of cards for her. Well god bless you and thank you again for coming to visit time and time again. It's because of you, the Lord, your prayers and support that Skylar is still here and has never lost her smile.

I will always be humbly grateful....sincerely....Marquette Haynes (Skylar's Mum)

Newsflash update.......09/09/2003

Hello.....Wanted everyone to know that Skylar had Oral surgery on the 19th of August. I took her to the dentist that week and while we were there Dr. Angie discovered an infection in her gums. She was not in immediate danger but they did want to operate and remove 5 of her teeth before the infection got into her blood stream. Dr. Baechtold or (Dr. Angie), Skylar's new Dentist performed the surgery at Mission St. Joseph's Hospital. She stayed overnight on IV antibiotics and was carefully monitored for signs of fever and further infection but Skylar did great.

Bless her heart she already had 7 of her teeth pulled a few years ago and a plate of false teeth placed in front. And now removing 5 more doesn't leave her with many until the permanent ones come in. The good news is those permanent teeth are preparing to come down and looked healthy within the gums so Dr. Baechtold removed her false teeth as well. She now has a rather large gap in her mouth it breaks my heart but she is being great about it!

Also have WONDERFUL NEWS to share! A group called THE GROTTO'S of NORTH AMERICAN Humanitarian Foundation will be covering all of her Dental expenses as our secondary insurance until she is 18. I can't tell you what this means to us it's such a BLESSING!! Skylar will need alot of dental work in the coming years to correct the mess the Acid Reflux did to her teeth prior to her Liver Transplant and Nisanfundiplication. She is also on several medications (Immune Suppressions) for the rest of her life that will cause problems to her teeth so this is really WONDERFUL!

GOD BLESS YOU...Mr.Taylor and ALL your members, to Dr. Baechtold (Dr. Angie) and STAFF, and to All of you who remembered Skylar's Birthday with Gifts and Cards from a VERY grateful family and special little girl who never stops smiling.

sincerely...Marquette Haynes (Skylar's Mum)

UPDATE AND MORE NEWS:
Just found out Skylar and I will be flying down to Miami on the 21st of September. Our Transplant Team headed by Dr. Kato will be operating again to remove several Stitch Granuloma's that are causing problems within her abdomen. They will also do more tests to determine when she can have the feeding tube removed. We are praying this will be last time but only the lord knows Skylar's course in life. It's my job to keep her smile firmly in place and I'm doing everything I can to make that happen. We couldn't do that without all of you who continue to pray and support Skylar and our family.

God bless you and please consider being an Organ Donor. Skylar is a perfect example of what can happen when you do. We not only know our donor family but are blessed to call them friends. Although this is unusual it's been a positive experience for us and a comfort to them knowing who she is. Click on Skylar's Transplant Journal and scroll down to Nov. 18th of 2002 to read and see pictures about it. I'm praying it will inspire you to become a donor and make a difference in another's life.

God bless you all.....sincerely.....Marquette Haynes (Skylar's Mum)

Dec. 8th, 2003

Happy Holiday and Greetings from Skylar's Place!!

Hope your Thanksgiving Holiday was wonderful and you were surrounded by family!

Sorry it's been quite a while since my last update. During the last several weeks Skylar and I have been going back and forth to Florida. First because of her surgery in September which went really well by the way. The transplant team removed not 3 but 12 stitch granulanomas from inside her abdomen along her incision. I was more than a bit surprised there were so many but they explained there were several concentrated in one area. Skylar seems to be feeling better now and her feeding tube is no longer bothering her. I'm able to feed her at night without any problems. Prior to her surgery the area was so tender, she would beg me not to hook her up to feed. But she knew it was important for her to eat or she would lose weight. So in spite of the discomfort she let me. They may find more in the future but for now, all is well.

In our last update I told you about Skylar having to have dental surgery removing several of her teeth. This was not the first time so she has few teeth remaining "bless her heart". I was pretty worried about how she would continue to eat by mouth but Skylar always find a way, nothing seems to stop her! So I am happy to say with special thanks to Dr. Angie and the "Grotto's of North Carolina" she will be receiving a beautiful new set of little false teeth for Christmas. Dr. Angie is working really hard to have them finished by the 15th of December. Skylar won't be singing "All I want for Christmas is my Two Front Teeth" this year. (laughing). At some point her permanent teeth will be coming in but not for another 2 years so the false teeth are a special blessing! Thank you Everybody!!!

In October Skylar and I journeyed to Florida for a VERY special opportunity to help our donor family. We were asked to testify on behalf of the parents in a trial against the owner of the swimming pool and apartment complex where Skylar's donor, Amber drowned along with her brother. It was an emotional time for all of us but we were honored to do it. On one day of the last days of the trial Skylar and I were sitting outside of the court room on a bench. Lisa (the Donor Mother) came walking out after testifying how the events of the children's drowning had taken place. She was crying and trying to contain her composure. Skylar looked up from her coloring book, jumped off the bench and went running down the hall with her arms stretch out to hug Lisa. I couldn't talk pass the lump in a my throat for a minute but Skylar's actions made me realize, that she is not just my daughter, I share with her Lisa. Skylar is truly blessed to have two Mum's, who love her very much.

Thank you again for coming to visit us and I'll see you in January for our next update. Have a wonderful Christmas and a Happy New year!

God bless you...sincerely.....Marquette Haynes (Skylar's Mum)

December 16th, 2003

Hello and Merry Christmas!

I have some special news for everyone and couldn't wait to share it with you. Yesterday Skylar received the cutest little set of false teeth! She is so proud of them!! Dr. Angie and her staff did such wonderful job making and placing them for us. You guys are the best!!

Also want to extend a special thank you to the "Grotto's of North Carolina" for making that happen. You see a few months ago they called and surprise us with the news, that any dental work not covered by our insurance would be taken care of by them. So from now on until Skylar is 18 "The Grotto's" will cover all her DENTAL expenses. This is such a wonderful blessing! Thank you so much!

I would also like to take this time to say something to DR. "ANGIE" Baechtold, NIKKI and all her STAFF. Many of you know that this year has been difficult for us. Between Skylar's expenses and my pending friendly divorce things have been difficult. Everyone seems to be adjusting well and the divorce will be final soon but it's put a financial strain on all of us.

Well this morning I was talking to the Lord while going over all the bills asking him which one should I not pay, (smiling) so I'd have a little extra to get something for the girls for Christmas. When suddenly the phone rang, it was Nikki from Dr. Angie's office. Inside their office for a while now, a HUGE stocking has hung filled with toys and goodies for the kids. Nikki was calling to tell me they had pulled the winning ticket this morning and Skylar had won!!! I was crying so hard I was so happy and so thankful! I want them to all know how much this means to us....So to Dr. Angie and all her STAFF I want to say once again you have shown us that "Angels" really do walk among us. WE LOVE YOU!! MERRY CHRISTMAS to all of you!!

God bless have a wonderful HOLIDAY SEASON and we'll see you in the NEW YEAR with our next update......sincerely......Marquette Haynes (Skylar's Mum)

March 8th, 2004

Hello Everybody,

Well it's been a pretty incredible month since our last update. I am happy to say we haven't had too many surprises. Skylar's only been sick a few times with microplasmic pneumonia during the month. Although still being fed by a feeding tube at night, she is able to play freely during the day. It mean everything to her to be "normal" at least for a little while. But pushing her feeding pole has never stop her from playing before :)

Before I go on I want to share a funny story with you about Skylar and her baby sister, Kylee Morgan. Due to Skylar's medication and her feedings I keep a pull-up on her at night. I would not want Skylar to attempt to leave the bed without help incase she pulled her tube from her belly. Anyway Kylee Morgan (age 2) by the way is in the middle of potty training. The other night I put them both to sleep in my bed. Skylar fell asleep right away so I left the room with Kylee awake and lying quietly OR so I thought! About 20 minutes later I went to check on them and I found Kylee sitting on Skylar's belly trying to change her pull-up. Kylee was talking to Skylar as if she could hear and she was saying "Skylar you peed need a clean diaper." Skylar was out cold and didn't even know she was there...I could not stop laughing. Kids are so cute!!!!!

Ok back to the update....We will be going to the transplant center within the coming weeks for another operation. In our last update I mention that Skylar has several new stitch granulamonas that will have to be removed from her abdomen before they cause more problems. Not sure yet if the transplant team will allow our local surgeon to do it or if they will insist on doing it themselves. Either way she is due for a visit with the transplant team in Miami. I will keep you posted on that.

Her school work is going GREAT with the help of her Home school Teacher. She has truly blossomed under (Ms. Fagan's) teaching and we both love her!! Skylar's strength has been her math and reading skills. But art and crafts are still her favorite. I think that comes from many hours spent lying in a hospital bed with a small area to play.

Speaking of learning, my daughter never stops teaching me compassion and patience for others. I marvel everyday at Skylar's people skills. There was an elderly tenant here at the apartments where I manage recently and every time Skylar would see him she made a point of saying hello. One day last week she told me "Mum I think Mr. Robert needs a HUG and he's hungry." Before I could ask her why, she said "He looked sad and she would hug him next time she saw him". Two days later we learned his son who had been taking care of him had had a stroke and was in a nursing home. Although his mind is very sharp Robert was used to his son cooking for him so he had not been eating nor did he tell anyone. He has since been moved to an Assisted Living Facility with the help of Biltmore Baptist Church but not before he received a big plate of food and a Hug from all my girls! Take care Robert, you and your son will be in our thoughts and prayers.

I thank the Lord everyday for giving Skylar to me. I have learned so much from her just by watching her love and compassion for others. Ironic really how special needs children often see things in people we don't. They're not afraid to reach out and help someone even, if it's just with a smile.

If you need a reason to become an Organ Donor then I challenge you to read Skylar's Transplant Journal. Scroll down to Nov. 18th of 2002 and read the story of meeting our Donor Family and how they have touched our lives. I pray it will touch yours too. Until next month take care and remember to SMILE and hug your loved ones today because you never know about your tomorrows.

sincerely....Marquette Haynes (Humble Mum to an amazing child)

Sunday Sept. 5th, 2004

Greetings from Skylar's Place,

I know it's been abit since my last update. Over the summer Skylar's had 2 more operations (26 total now), been back to visit the transplant team in Miami, pneumonia twice, her 6th birthday on August 24th, gone fishing with her sisters and daddy, ripped out her feeding tube 3 times and had to have it surgically replaced, started first grade with her homebound teacher Ms. Fagan, met her in school teacher Ms. Newsome and made the cover of the October 2004 issue of the Alpha1 to One Magazine. The article, beautifully written by Joe Younger is called "Angels without Wings". I'll let you know when it hits the stands and where to find it.

She is still being fed by a "Mickey" feeding tube on her belly. We had hopes of coming off at some point over the summer but it doesn't look like that will happen any time soon. The doctor recently increase the feeding time from 12 to 14 hours a day in order to keep her protein level up. (For those reading her website for the first time) after Skylar's successful liver transplant her pancreas stop making the enzymes that allow her body to absorb nutrition. Without those enzymes Skylar would starve to death. The special formula (Peptamen Junior) she's fed thru her feeding tube replaces what she needs to stay alive. And in spite of it all she has managed to keep her smile and her sense of humor.

Speaking of her smile in the last month Skylar's new front teeth have made a sudden appearance. I can't tell you what this means to her. After losing most of her teeth from Acid Reflux as a toddler and wearing false teeth (made by Dr. Angie) for the last several years she is thrilled to see her own coming in. We are now singing "All I want for Christmas is my two front teeth :)

In April Skylar and I were guests of the Foundation at the Alpha1 conference in Atlanta. It was fun to put faces and names together for people we have prayed for during the pass year. Seeing our old friends that we know and love was pretty wonderful too. As usual there's a funny story to go with everything we do.

After arriving at the hotel we found out there was a problem with our room. Skylar, already on her feeding pole for the night was really tired so it was abit upsetting. I started to walk away when I heard him ask Skylar if her name was Skylar Haynes. She smiled and said "yes". He replied "Well I do have a room for you". It had been booked under her name not mine. She was pretty tickled over that but it wasn't until we saw the room that she really understood what it all meant. You see Skylar had been given the best room in the Atlanta Hilton Hotel the "top floor", the executive suite, it was beautiful! Huge bed, bathroom, office, living room with a bar (child proofed of course) and filled with Cokes, juice and lots of candy! After walking around the room she turned to me and said " I think they love me," it made me laugh but I agreed. I would like to say a special thank you to John and Diane Walsh, Alpha Net, The Alpha1 Foundation, Auntie Marlene, Liz and everyone who made that week-end incredible for her. God bless you! We love you!

I would also like to thank the CODE BLUE FAMILY for remembering her birthday and for making visits to the mailbox a real treat. We love you and thank you from the bottom of my heart!

And to all of you who continue to come back time and time again with your support and prayers to read Skylar's site. God bless you and thank you for caring about Skylar.

sincerely....Marquette Haynes (Humble Mum of Skylar Haynes, an amazing 6 yr old little girl)

February 18th, 2005

Hello Everyone,

Thank you again for coming back to visit Skylar time and time again. Your love and prayers have been so faithful and I am thankful for all you do. It's been a great few months without too many surprises thru the holidays. She was sick a few times but overall did really well. In December Skylar and I were the guests of our friend country singer Collin Raye's concert. It was wonderful! After the concert Skylar and I went back stage to hang out with Collin and his family. We had a great time! Thank you Collin!

We are going back to the hospital in Miami this month. Still not clear on the date yet but it's not an emergency which is the good news. The transplant team will be operating again on her feeding tube site and the area around it due to more granulamona's. That pretty much seems never ending but as soon as all the stitches from transplant make their way to the surface I think it will stop. Her little body rejects each one causing pockets of infection inside her abdominal cavity instead of dissolving the way they should. This pass week she also had a bout with bacterial pneumonia and the week before we all had the flu but otherwise a good few months.

About three weeks ago now I did something really horrible. I accidentally ripped out her feeding tube! The girls were lying in bed and Skylar was almost asleep. I pulled back her covers to check her feeding tube but didn't realized the covers were wrapped around it. All I remember was a loud popping sound and Skylar screaming! I tried unsuccessfully to place the tube back in but had to call an ambulance and have her rushed to the ER. Doctor Walberg (our local Surgeon) was able to replace it. He didn't use any sedation because we had run out of time. You see, you only have a window of about 30 minutes to replace the feeding tube before you lose the track. He used a long metal rod called a "Herr Garr deliberator" it was pretty incredible to watch. Skylar was wonderful afterwards. I felt terrible of course and was almost in tears but when it was over she put her arms around my neck and told me "Don't cry Mum I love you and your the best Mummy "ever". Then I really started crying but we were smiling together through our tears.

In our last update I told you about Skylar making the cover of the Alpha1-to-ONE magazine. Well for those of you who didn't get a copy you can see the cover page in the left hand corner. They did a beautiful job on the article and I wanted to give you all a chance to read it. For a FREE copy of the magazine write to the Alpha1 Foundation or call them TOLL FREE at: 877-2CURE A1 (877 228-7321) and ask for the Skylar Haynes cover issue of the Alpha1-to-One Magazine.

Alpha-1 Foundation
2937 SW. 27th Avenue
Suite 302
Miami, Florida 33133

I will keep you all posted on her hospital visit and surgery in our next update. Thank you again, God bless all of you for loving and caring about Skylar. I pray that her story continues to inspire others to become Organ Donors. To read about Skylar's transplant Click on Transplant Journal.

until next time,
sincerely...Marquette Haynes (Skylar's Mum)

June 6, 2005

Hello Everyone,

Just wanted to touch base and tell you the latest regarding Skylar. To those who already know forgive me for backtracking abit to bring everyone else up to speed. For the last several weeks Skylar's platelets and white cells have been dropping. Our transplant team in Florida did a complete exam and diagnosed her with what they believe is PTLD or Post Transplant Lymphoproliferative Disease. After discovering that several of her lymph nodes were enlarged. It's caused by the EBV virus or (Epstein Barr Virus) it settles in the lymph nodes causing malignance to occur if untreated. We were then referred to a personal friend of Dr. Kato's in Chicago. The two teams will be working very closely with together in regards to Skylar's care.

While in Chicago another series of tests was performed all confirming what they "think" is PTLD. Notice I said "think" they are NOT yet convinced it's reached the advance stage of cancer. This of course is the good news!!! Her blood work showed her platelets to be rebounding abit so they've decided to wait and try a different treatment methond first before going in to remove some of her lymph nodes or do a bone marrow for biopsy. They want to stop or reduce her Prograf. Prograf is Skylar's immune suppression, it keeps her from rejecting her transplanted liver. Their going to let Skylar's body fight this for abit and see what occurs. I know your next question so "yes" we do run the risk of Skylar trying to reject her new liver. But the doctors have assured me they won't let it go that far. Our home health care nurse Kimberly, will be coming out weekly to draw labs and watch over her.

If we are still in the viral stage of PTLD then Skylar has a greater chance of beating this without chemo. If not and her blood work will show that, then they'll have to proceed as planned with treatments. For now "we wait"....I can't tell you how upset my exhusband and I were at first. Waiting is always the hardest part but I'm praying and trusting in the Lord they know what their doing.

As I said we are praying for the best. I want to thank all of you for the prayers, cards and gifts of support. It makes my day to see her smile light up when there's something in the mail for her.

I promise to keep you updated as I know more....God bless you all

sincerely....Marquette

July 13, 2006

Hello Everyone,

I know it's been a long time since my last update to Skylar's site. I'm sorry, in the past year I've been in the middle of a legal battle with my ex-husband over my rights to post my personal experiences with Skylar's transplant and current condition. I'm happy to say the judge ruled in my favor. I've always felt if sharing Skylar's trials, tribulations and even more important, her "victories", helped even one person, than I was doing the right thing.

I'd like to start by saying Skylar is doing great! We've had a few bumps in the past year but nothing like the year before. In my last update posted June of 2005, Skylar was fighting what we thought was PTLD. After treatment the virus was put back in check and although still being fed thru a MIC-KEY tube on her abdomen 12 hours a night she's done remarkably well.

Skylar will be 8 yrs old on the 24th of August. She's still home schooled and will be entering 3rd grade this year. It's been 5 years since her successful liver transplant and every day has been a wonderful blessing. I'm humbled and inspired by her strength and courage, each and every day. I pray when you read my journal it will inspire you to continue to encourage your loved one waiting for transplant. Best advice I could offer is never give up, no matter the odds.

Most of you know Skylar was born with multiple medical problems and after reading Skylar's story I'm often asked "What keeps me going with a smile on my face" or "How do I do all this and stay sane without medication". (laughing) Well besides the obvious with "the Lord's help" I would have to start at the beginning to answer that question. You see my ex-husband was a Green Beret in Special Forces when Skylar was born by C-section at hospital in Nashville, Tenn. Since I'm very pro-military and didn't want to tarnish that experience in any way, I've never talked about what truly motivated me. So I would like to take this time to address a few people I've never talked about.

Please noticed I said a "few". First to the doctor, who told me to "make my daughter comfortable and let her die". To the military doctors, who knew very little about ALPHA1 and told me "Skylar wouldn't need a transplant until she was "at least 10, IF EVER". To a few of my ex-husbands "team wives", who thought "I was making my daughter sick for attention". To those few "at the beginning" who thought we were fundraising "just for the money" since we weren't listed for transplant yet. To those who thought all I needed was to give her "a few extra vitamins, medication and she would be fine". By the way to those few who didn't know, ALPHA1 is "Genetic". And my ex-husband and I "BOTH are carriers". And last to my ex-husband, who never gave any emotional support in my fight to save our daughter. And "rarely" came to the hospital for any of Skylar's 27 surgeries, countless doctor visits or medical procedures even to this day. (Ok ok, in his defense) He's met the Florida Transplant Team once or twice (during transplant) but he's never met her Chicago Transplant Team. And I don't think he could pick her Pediatrician out of a police line up. (laughing)

I know we all deal with difficult issues in different ways. But his way, was to leave it to me to handle alone. So on that note to all of you "I've listed", I need to give a heartfelt and truly sincere "thank you". I'm not being cheeky, I mean it, thank you. Because of your "negative and hurtful comments" I became a stronger, more compassionate forgiving person, a better mum and the best advocate for ALPHA1 and Organ Donation I could possibly be. For those still with me (smiling) my ex-husband offically left the military in January of 2001 and we moved to North Carolina to be near his family. In April of the same year Skylar was listed for transplant in Miami, Florida. And on "June 16th of 2001" at the tender age of 2 and half, Skylar received her life saving successful liver transplant. I'll never forget what Dr. Kato told me after the 13 and half hour surgery. He said "If we had waited much longer, Skylar wouldn't be here".

You know, I haven't always made the right choices in my personal life. But I know in my heart, I made the right choices for Skylar. In the midst of painful adversity, I helped save my daughter. And who knows, maybe someday, that drive will help save "yours".

Last, but never the least, to those of you who ALWAYS believed in us, I'll forever be grateful. It's because of you that Skylar and I never lost our smile. Or my cheeky sense of humor. We love you!

sincerely...Marquette Haynes (Skylar's Mum)

October 27, 2006

Hello Everyone,

I really want to thank you everyone for coming back to visit Skylar's page time and time again. It still humbles me when I think of how many people my daughters life has touch. In spite of the bumps in the road and the challenges she's had to face she never stops smiling.

Since our last update Skylar's monthly blood labs have shown a drop in red and white blood cells. Because she's immune suppressed already due to her medication and transplant this leaves her even more vulnerable to infection. In August she developed pneumonia and before she could recover fully it came back again. Needless to say we were knee deep in breathing treatments and extra blood work. Right now other than feeling abit under the weather and having the sniffles she's doing ok.

As winter sets in we'll be heading back to our transplant team in Chicago for a check-up on her pancreas. And if her blood levels continue to drop they'll want to do further tests to find out if we're running into a problem. Right now I'm just praying it's a little bug and there's nothing to worry about :)

Thank you again for coming to visit Skylar and for all the cards and prayers. We ask you to please remember our friends and loved ones who are still waiting for transplant and consider being a organ donor. My daughter has been blessed with her gift but there's so many are still waiting for theirs. Please be an organ donor and help save a life.

Thank you and God Bless you all,

sincerely...Marquette Haynes (Skylar's Mum)

8/22/2007

Hello Everybody,

Since my last update on July 1st, I'm happy to say Skylar's kidneys seem to be responding better. All the tests results show that although in mild dysfunction there's nothing major going on to be worried about at this time. Which is wonderful news!

The other great news is Skylar's birthday is August 24th!! She'll be nine years old WOW! It's pretty amazing after everything she's been through to get this far. It's been 6 years since her successful liver transplant and everyday's a blessing no matter what we've gone through to get there. Skylar's worth it :)

I want to thank all of you for your continued love, support and prayers for Skylar and my family. I'll write a longer update later but I just wanted to touch base and let you know the good news. Please feel free to email me and share your personal story or burden. It's always nice to be able to forget my own troubles and pray for someone's else.

Take care...until later.....sincerely...Marquette Haynes (Skylar's Mum)

Hi Everybody :)

I know it's been abit since my last update on Skylar's website but things have been crazy here and haven't had a chance to write a update but I promise "I WILL" :)

We're all doing ok and still smiling through it all. Hope you and your families are as well. When you get the chance we'd love to hear back from you and find out what's happening in your corner of the world.

Here's the lastest from ours :)

Skylar's featured in the new Country Magazine called HonkyTonk. It's their first edition that alone is exciting and a BIG deal :) and we're both humbled and thrilled to be apart of it. You can check out their website at www.honkytonkmag.com or look for the magazine now out in news stands cross the US. They did a 2 page spread in the middle of the magazine with pictures of Skylar's story from fundraising all the way to her successful liver transplant. And giving us the chance to thank all the wonderful people in the "MUSIC BUSINESS" in Nashville and around the Country" who along with our wonderful Medical Team in Miami, our Donor Family and the Alpha1 Foundation help to make Skylar's successful liver transplant possible 6 years ago.

Check it out! :)

Love to hear back from you guys when you have a minute in your busy lives. Until then take care and God bless :)

sincerely...Marquette (Skylar's Mum)