Journal History

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Friday, February 5, 2010 10:50 AM CST

Ok ok--I know I have been horrible about updating this page. Facebook has taken over the short messages and I forget that not everyone uses that. So I will fill everyone in on what all has happened since the last post and fill this with pictures....

I guess I left off right after Makenzie started school. She is now half-way through 2nd grade. Hard to believe. She doesn't exactly love school. Well she loves the social parts--just not the learning parts. She struggles a bit with reading but soars in math--everything else is somewhere in between. She continues with taking horses lessons which is her love. She would live on the farm if I would let her. I worry about germs some, but mostly just let her enjoy as long as she doesnt go around chickens. She started 4H on top of her lessons and so last week we bought a sheep. Not even sure what to say about that. The girls will each raise there own sheep at the barn and then show it and eventually it will go to a butcher---she was all smiles until that came up. Im sure there will be lots of drama throughout this spring. We will go meet him/her next week and find out which one is hers. She says she will name it Starlight if it is a agirl--and Dave if it is a boy---Ill let you know how that goes. Since I have posted last she also celebrated her 8th bithday. A task no one thought possible. Ill include many pictures here---she spent the day at Pump-It-Up with ALL of her friends...



along with her family.....me,



and her most favorites...nana,



and Papaw,





All she wanted was to be able to sit in the big birthday chair to get her presents...



Next came Christmas. It was crazy as usual--but we had a blast. I redid her playroom as a big girl room and so now she has her own tv and wii out there. Hoping she and Victoria will migrate out there eventually. Her most exciting gift was her own saddle....



Im going to try and include the video of her getting it here...too funny.



The only other things I think I have forgotten that have happened were Halloween...



..and the night she was a chef for Children's Miracle Network at a gala at Hotel Roanoke---she thought that was awesome...





Here and on the photo page Ill just add a few birthday pics and some from Christmas. I promise I wont wait another 6 months to update again. Thank you all for checking on us. Until next time....

Monday, August 24, 2009 5:44 PM CDT

Geez!! Where did the time go?? I think this may be a record for longest I have gone without journaling. I could almost swear that summer vacation just started, but as you can see above, today was the first day back to school in the fall. Craziness. Today was Makenzie's first day of second grade. It seems to have gone well and she is ready to go back tomorrow. Hoping she is able to improve her reading skills and will quit saying "oh, what does it matter??!!" whenever she comes across something she doesn't know. This is sure to be a long post as it appears I have the entire summer to cover--so here goes....school finished up the 2nd week of June and then we took off and spent about 10 days in Nashville with our friends....


While we were there we were able to do just about everything Nashville has to offer but I wont include too many pics---lol....






We, as always, got to spend some great times with our friends in Knoxville. Here she is with Morgan and Emily and this is also where she finally learned to swim without arm floats--she is unstoppable now...





She also got to spend some quality time in WV with her Nana and Papaw. On one of the trips she took her best friend, Victoria, and they had a blast swimming and of course horseback riding. She was finally old enough to go on a trail ride by herself...





After all of that she spent a week at softball camp of which I have no pictures if you can believe that--and then 4 of her friends spent the entire week with us so they could all go to horse camp during the day. Here they are all piled into her room...



And here they all are after the first day...



Too funny--they were exhausted and smelled horrible every single day---but it was a blast. Her sister, Deanna, got to come and spend the week so that was an extra treat..





This is a special week that I hope she gets to do every year. She is starting lessons at the farm in 2 weeks...





After this week she spent time at Carilion's Family Camp with her friend Sarah...



And here she is with her friend, Hunter. It is his mom and aunt that have the horse farm. I asked them to get together for the picture and they look a little too comfy for me---lol. You can see she and Hunter both sporting their med ports as Hunter has Leukemia...



After Family camp we left for her yearly visit in Pittsburgh. This was a big year for her as she is now old enough to go to Transplant Camp---the doctors and nurses and older transplant kids go and take care of them with no parents---they thought they were big stuff being dropped at the bus---she and Emily both told us to shooo--that they were fine...so they took off without looking back...



She and Emily had a blast---here is a new picture of them..



You can see in Emily's face the steroids she has been on--there is only a month in between the pictures in the pool and this one--shows how quickly things can change with these kids. She had an episode of rejection and then the steroids brought on a virus and it is a vicious circle. Please keep her in your prayers as she is now back at school but with a PICC line again and getting IV meds. While we were in Pittsburg we also got to spend time at the new Children's Hospital. WOW!! What a difference. Wish it could have been like that when we were living there. It is a beautiful, big, happy looking place. Very child and family friendly--just amazing. She got to see her favorite nurse from the floor while we were there--well she was my favorite--Makenize was a little young..but here she is with Sharon..



and Alice...



and Dr George...



and one more pic of them getting ready to leave for camp in the camp t-shirts...



We also got to spend a good deal of time with the Christenson family while we were there---we havent been able to do that since Izzie passed away. It was a year anniversary while we were there--here she is with Izzie's sister, Maddie...



As far as her health goes--she has some enlarged lymph nodes in her abdomen still--so they decreased her immune supression and she has to go back for a cat scan and clinic in December or Januaryand they will biopsy them if they havent shrunk. She has cataracts on both eyes so she saw an eye specialist that changed her glasses and now she wears them all of the time and will follow up in case she needs surgery in the future. We are also going to remove her feeding tube in November in case it has to be surgically closed so they can do that while we are there if they need to. I guess that is about it. We went to WV yesterday for Nana and Papaws birthday and she got spend time with her cousins...



And then it was off to school this morning. It is actually kind of nice to get some sort of schedule back. Seems like we have been running for months. We havent even been in town to go to church since school let out--so we hope to get back in a routine this week. I promise not to wait so long to post again. Thanks for always checking in on us.

Wednesday, June 17, 2009 1:37 PM CDT

Once again it seems like forever since I have posted. Overall Makenzie is doing good. She managed to catch a little bug a few weeks ago that landed her on IV fluids for about a week and had to get a scope and biopsies--but we were able to do that here instead of having to go to Pittsburgh this time. Seems it was just a virus of some sort that she is now over. Since I last posted Makenzie has started and finished her second season of fast-pitch softball. Here is a little video clip of one of her hits--she got the game ball this game---these girls are serious about playing ball....



Here she is with her coaches all acting like a bunch of nuts...



We also went to visit our cousins in WV that have a horse that just had a baby--anyone that knows Makenzie knows that horses are her passion--so she thought this was fantastic...



Here she is with two of her cousins, Michael and Nicholas...



She also had her end of the year piano recital--she did really good. I am not sure that she LOVES piano--but I do hope it is something she will continue....





She also got to go fishing last weekend with alot of the people from church--she caught her first bass...



That was all fun until a 6 foot black snake slithered down beside us and then into a bush and ate a nest of baby birds--we were pretty much done after that. I guess the biggest news is that Makenzie is now a second-grader. She finished up her first grade year with Field Day...



We are so going to miss Mrs. Stevens. We cant say thank you enough for the wonderful year she has given Makenzie. I would keep her with us forever if I could...



And also big thank you to Ms. Elaine who is at school for her when she needs help but makes it possible for Makenzie to do all things normal...



I guess that is about it for now. We are leaving for Nashville next week to go visit some friends. Ill post more about that trip after we get back. Hopefully she will stay well for this--seems she always manages to catch something when we are on vacation--we will see. Thank you all for always checking in on us....

Sunday, May 3, 2009 9:08 AM CDT

Sorry about the delays with adding pictures---caringbridge has done some updates and it has made it more difficult to navigate. Here are a few pictures from Makenzie's "belly birthday" as she calls it.....





We shared the day with Makenzie's Nana and Papaw and my best friend Laurie and her family. We had a very nice dinner and then went to Laurie's house for dessert and a balloon release. We sent up balloons for our donor and his family as well as our friends Caleb, Isabelle and Markelle. It was a very noce day spent with friends and family just like it should be. Being as I havent jounaled in a while--here is a little bit more of what has gone on since I last wrote. First there was Easter...





Then we spent part of Makenzie's spring break visiting in TN. On the day we returned Makenzie and I spoke at an organ donor family celebration---I love that event and getting to meet donor families and letting them see what good they have done....



Makenzie also played piano and sang at church last week--so very cute....





Lastly, softball season has started--she loves playing ball. She hit a single and a double in their first game yesterday and was proud...



I guess that is all for now. Thank you all for continuing to follow Makenzie's jouney. I will post more as things happen.

Sunday, May 3, 2009 9:08 AM CDT

Sorry about the delays with adding pictures---caringbridge has done some updates and it has made it more difficult to navigate. Here are a few pictures from Makenzie's "belly birthday" as she calls it.....





We shared the day with Makenzie's Nana and Papaw and my best friend Laurie and her family. We had a very nice dinner and then went to Laurie's house for dessert and a balloon release. We sent up balloons for our donor and his family as well as our friends Caleb, Isabelle and Markelle. It was a very noce day spent with friends and family just like it should be. Being as I havent jounaled in a while--here is a little bit more of what has gone on since I last wrote. First there was Easter...





Then we spent part of Makenzie's spring break visiting in TN. On the day we returned Makenzie and I spoke at an organ donor family celebration---I love that event and getting to meet donor families and letting them see what good they have done....



Makenzie also played piano and sang at church last week--so very cute....





Lastly, softball season has started--she loves playing ball. She hit a single and a double in their first game yesterday and was proud...



I guess that is all for now. Thank you all for continuing to follow Makenzie's jouney. I will post more as things happen.

Wednesday, April 29, 2009 10:05 AM CDT

Hard to believe it has been 6 years today since we started on this transplant journey. Makenzie is doing very well. We couldnt ask for more right now. I promise to write a much more detailed update in the next day or two with pictures. I just wanted to take a moment to ask everyone today to say a prayer and thank you to Makenzie's donor family who made this day and the last 6 years possible. Also take a moment to remember our little friend Caleb--today is his 2 anniversary in heaven. I will write more soon.

Sunday, February 15, 2009 2:29 PM CST

Hi everyone. Things remain nice and quiet around here. Makenzie started back to school last week so that is much better. She is way too social to have to spend her days cooped up with no one around. Today is her puppy Koko's first birthday. She and Victoria planned a big party for her......



Here was her birthday cake...



Those girls are too funny. They rarely are apart more than an hour at a time. We are grateful for her and her family next door--we couldn't ask for better....



I dont know if Kopper or Koko were more thrilled that they had to wear hats....





I guess that is all that has been happening here. Oh, yesterday was Valentine's Day. Makenzie thought that was great...



Some of our friends had a Valentine's Day breakfast so we fed about 12 kids heart shaped sausage and pancakes--they had a blast...



I also just wanted to stick a little video in here of Makenzie and Victoria playing with the dogs. Kopperboy just loves to swing with them...




I will post as other things happen. With this being the season of illness we just pray for quiet days. Thank you all for continuing to check in on us.

Monday, January 26, 2009 4:36 PM CST

Hi all--very little has been going on around here the past few weeks. We never complain about that---boring is good sometimes. There have been a few issues at Makenzie's school--nothing that can be fixed just yet--but she will doing homebound school for the next month or so--nothing to do with her health--that has been going well all winter. Hopefully we wont drive each other crazy being cooped up in here until then. Just waiting for warm weather. Makenzie spends most all of her afternoons riding 4 wheelers with Victoria---that or they play American Girl dolls---one or the other. But thankfully they have fun together most all of the time which is a blessing. In their spare time they torment the dogs---here are a couple of funny shots of Koko being their "patient" and riding in the American Girl wheelchair (these arent so clear because they were taken on a phone--but funny nonetheless)....





So I guess that is about all of our news--kind of boring but good. Ill post again as things happen around here. Thanks for always checking in on us. Here is a picture of Koko's new haircut before we go---thanks again

Thursday, December 25, 2008 10:22 PM CST

Merry Christmas one and all. I guess we should title this day SANTA ROCKS!!!! And while we do know it is not the reason for the season, it is hard to not get such a kick out of the screams of joy and delight Christmas morning. Makenzie was very late getting to bed as we had travelled to WV and then couldnt sleep because she was so excited. I am sure I crazy for letting Santa do what he did, but....



She loved all of the various toys and dolls and everything else she got today--but the main delight was the ATV. She and her friend Victoria had been begging for one since the summer. So here is Makenzie, Victoria and Victoria's brother enjoying their morning...



There were a gazillion other things of course--but they rode those things all day. Right up until it was almost dark and Makenzie was crying because her legs were hurting. Maybe not so long tomorrow. It was just a super day all around here. Nana and Papaw were here to visit and got to see all of the excitement. We wouldnt have had it any other way. Bless you once again Makenzie's donor family for making all of this posible. I also wanted to add that a few days ago Makenzie got to spend the weekend with her brothers and sister. They had such an awesome time...



Oh and as you tell by the picture, Makenzie ended up getting glasses last week--she is near sighted but also has a cataract they said was probably from all of the steroids she was on a couple of years ago. Hopefully nothing to worry about. I guess that is all from Christmas 2008 at the Blackburn house. I am exhausted and Makenzie is already asleep--so I am heading to bed. Ill add a few new pictures of Makenzie on here and also the photo page. Merry Christmas!!!!

Friday, December 5, 2008 10:07 PM CST

SSShhhhhheeeeeesssss 7!!!!!! Can you even believe that? I am not sure I can. I mean, sure, some days it certainly feels like we have been doing this for 7 years, but then other days it doesnt seem possible. On the healthfront she has been doing well. She had a new port put in a week or two ago because the old one quit working---hoping this one will last a long long time. She has had to miss a few days of school here and there but nothing terrible overall. She is so very excited for her birthday party tomorrow. She looks forward to her party all year. We are so appreciative of all of the friends and family that make this day (and so many others) special for her. I took her to TN for a quick day visit last weekend. Her friends Emily and Misty and Morgan that usually come here for her birthday werent able to come--so we went there and spent the night and took her to see the Black Bear Jamboree in Gatlinburg...


She and her buddy Emily had a great time being together---they liked the show...



And then they had a little birthday party for Makenzie since they couldnt come to VA this year...



We were able to go to see Santa at the Santa shop. Makenzie swears he is the "real" Santa. Too cute....


I tend to agree with her on that. I guess that is about it from here. We are expecting to have a large crowd here tomorrow like we tend to every year. it is hectic but Makenzie loves all of it. She is doing High School Musical this year--and just like the cake says---"We're all in this together"--I guess that about sums it up--Ill add some new photos to her photo page as well. Several special prayers requested. Our friend Ian got a full set of new organs yesterday--so please pray for him as these next few weeks can be really tough. Also say a prayer for the George family. I am sure many of you saw on the news about the physician and his daughter that were killed Wednesday. He is one of surgeons that I work for. He was just a really good man and it is hard to make sense of any of it. Please pray for his wife Theresa as she has to live without him and also her only child. One more prayer for Makenzie's donor family. I hope somewhere they know what a gift they have given us.

Monday, November 24, 2008 8:31 AM CST

Hi everyone--sorry for the long delay. This will just be a short update to let everyone know that Makenzie has been doing good. She is loving first grade and has a wonderful teacher. She had to go in a few days ago and have a new port put in because the old one malfunctioned--but other than that it has been a calm couple of months. Her 7th birthday is in 2 weeks and she is so excited. I promise to put a bunch of new pictures of stuff up in a few days. I hope each of you have a blessed Thanksgiving and remember all that we have to be thankful for.

Saturday, September 20, 2008 8:17 PM CDT

I am so sorry it has taken forever for me to update. I am not sure where the time goes sometimes. Seems like some weeks it is Monday morning and the next time I turn around it is already the weekend and I havent gotten much done. Between taking Makenzie to cheerleading, piano, AWANAs and also doing school work--seems there isnt enough time in the day. I guess I left off somewhere right after we were in Pittsburgh for the Transplant Games. While we were there they found some enlarged lymph nodes in her abdomen--so we went back last week and she had a repeat CT scna which looked better--so for now we are just going to wait and see what happens. Hopefully she wont need another CT until next summer. I guess that is it on the medical front. After we left Pittsburgh from the games, we came home and the next day turned around and headed to Virginia Beach with Laurie, Eric and Katie, Peyton and Sarah. The had an absolute ball at the beach....

Makenzie isnt too big on getting in the ocean, but then again neither am I...

She mostly enjoyed swimming in the hotels pool and also loved riding on the boat for a dolphin cruise...

After the trip to the beach we spent a day in Busch Gardens and suprisingly she rode all of the crazy roller coasters---I was shocked she wanted to ride, but she did great and had a ball with her friends there. After that we just spent some time getting ready to start school back. In the main picture on the page you can see her first day--she has been doing great and we just love her school and her new teacher. Hoping everyone stays remotely well as the season of illness is about to begin. Oh, and I did almost forget--when we went to Pitt last week again for her CT scan we were able to go to GI conference they were having--it was awesome to sit and listen to all of the world renowned doctors that I have only read about speaking. Makenzie did good during the conference. She spent most of her days with Patrick...

Patrick is 15 years old and lives in Canada. I first met his Mom Bea when Makenzie was born--she had Patrick who was about 8 at the time and had been on tpn all of his life--they were such an inspiration about showing me that these kids can be normal. Patrick is now 15 and remains on tpn--Makenzie thought it was so cool that he had a line and a button and an ostomy like she did. He took such good care of her while we were there--it was a delight to watch.
I guess that is all of the news about her right now. I ask that you keep our friends the Christensons in your prayers. I know you have all heard me talk about Makenzie's friend Isabelle. Izzie passed away 4 weeks ago--it has been a huge blow to all of us but especially her mom dad and sister. Izzie was a shining star in our world and will be forever missed....

Tuesday, July 15, 2008 8:09 PM CDT

We made it back safely from Pittsburgh early this morning. Everyone is tired but I did want to post a few pictures before we go to the beach tomorrow afternoon. Just a little bit about how the Transplant Games went. On Saturday the Opening Ceremonies happened. This was by far the best part of the entire week. Each state was represented by atheletes--they all came out state by state into the convention center---then after all of the transplant recipients were seated they started bring out the donor families from each state. And they kept coming and coming--by the thousands. They each carried either pictues or reminders of their loved ones that had donated organs--it was quite an emotional experience to see them all and to hear the athletes chanting "Thank You!! Thank You!!!" to them. It is something to be in a room where half of the people wouldnt be alive if it werent for the other half. Then familes got up and spoke--some waiting for organs, some who donated organs of their children and spouses---recipients got up and met with the families that had given them their organs---Dr Thomas Starzl got up and spoke--he is the pioneer of transplant surgery---he said something about how if you could bottle up all of the compassion and generosity in this room you could sale it and pay off the nations debt---how true that was. It is really difficult to explain and something you may not be able to understand unless you have walked in these shoes or witnessed it--but it was a beautiful thing. Makenzie had a blast participating in the games---here she is swimming in the 25m freestyle.....

She ended up winning the bronze metal for this event and she was so very proud....

She keeps showing her medal to everyone that will look at it..


Here she is running in the 50 yard dash...




She didn't place in the race but she sure did run her heart out. All in all it was one of the best things we have ever done. We plan on being a part of the games as long as she is able. Here is a picture of our entire team--they all did a great job!!!



Ill add a few new pictures to her page as well. We feel blessed to have been able to participate in the games. It was great seeing old friends and meeting a few new ones. Here is to all of the donor families that made all of this possible. God Bless you.

Monday, July 14, 2008 7:01 AM CDT

Hi all---I just wanted to add a quick update since I havent been able to add pictures while we have been in Pittsburgh. On the medical front Makenzie's visit went well--they are all very impressed with her size and how well she is growing. She had a few areas of concern on her CT scan so we will need to return in 2 months for a follow up CT. We wont worry about it until then. As for the Transplant Games--what an experience this has been---I will post much more in detail and get pictures on here tomorrow after we get back to VA. The main reason we decided to participate this year was because they were here in Pittsburgh---I wasnt sure if we would be doing again---but after being there for the opening ceremonies and seeing what all has happened this week--we wont miss another one---I will add stories after we get back---I did want to let you know though that Makenzie brought home the bronze metal in swimming---she is so very proud and is still now sleeping with her medal---thank you for all of the support and Ill post again after we get back...

Sunday, June 29, 2008 7:47 PM CDT

Well I am sorry it has once again taken me a while to post an update---no news is good news around here. It has been quite busy here since the last time I posted. Ill try and do a quick synopsis. Not long after I last posted we went to TN to visit our friends and go camping. Makenzie and Emily had a blast...


As did Koko and her brother, Snickers--it was the first time they has seen each other since they were seperated--they were too funny....



Those two pups are killing all of us--but they are a spectacle to have around. Makenzie loves Koko to pieces. After that Makenzie finished up her kindergarten year---simply amazing. She had a great year and they finished it up with their Field Day...




Around that same time she finished up her year of piano lessons with her first recital. She was so very proud. I was proud of her for being able to just get up there--she says next year she is going to sing too---





Like I said she has been busy---last week they finished up their softball season--too funny---fast pitch softball with little kids is a hoot---here is a picture of her catching and one of her getting the game ball the day Nana and Papaw came to visit...





And finally for her last little event--she spent the last week at Horseback riding camp--this has by far been her favorite thing....



Here is her and her friend Victoria--they are inseperable...



She even enjoyed cleaning the stalls even though I had them make sure she wore gloves and washed her hands ALOT!!!



She finished up the last day by getting 7 ribbons in the horse show--she thought that was something else--they all did. So awesome to see her having so much fun...


I guess that is all for now. We are off to Pittsburgh next Monday for about 8 days for scopes and CTs and blood work and check ups--but hopefully they will like what they see--we havent been there in over a year---hard to believe. Makenzie will be participating in the Transplant Games while we are there---it should be awesome---we will be at the Pirate/Cardinals game on Friday night if any of you get those channels--they will be honoring all of the transplant recipients from around the world--ill take plenty of pictures. Until then keep us in your thoughts and prayers for a safe trip and good results---until then.....

Tuesday, April 22, 2008 9:09 PM CDT

Update--4-29-08
Has it really been 5 years since this transplant journey began?? At this time 5 years ago we were all waiting for Makenzie in sugery and praying that she survived and came out better on the other end. Little did we know then what a miracle was happening. She came out of surgery and with a few bumps along the way did wonderful. She is now 6 years old and thriving. We know to never take any day for granted and we are so grateful to Makenzie's donor family for the gift of life that they gave her and all of us. Say a prayer for them on this day as this must be a very hard day for them. Also say a prayer for our friends Korri and Jared as they lost Caleb a year ago today as well. We sure do miss him. We sent up a purple balloon for him today as purple was his favorite color...

So we keep the others in our hearts and minds--and also celebrate 5 wonderful years of Makenzie's life that have been a gift to all of her friends and family. Ill add a few pictures here of today. Bless you all for continuing to love and support us through the years.....














I wanted to leave this previous update on here too so that you could all see her playing softball. So enjoy all of the pictures...

Well as you can see from the above picture, Koko made her way home on Friday. Since Kopper can not read--I will say that, other than Makenzie, she is one of the cutest things I have ever seen...all 2 pounds of her...



There is a reason they are made so cute for sure. She is already chewing anything she can find and terrorizing the house. She has been quite a handful, but is overall doing well---we cant say thank you enough to Dan and Elise for the gist of her. hope I am still saying that in a few weeks--haha. Makenzie got to help give her her first bath..





She actually does pretty good in taking care of her and likes to be "in charge" of her as she says. After much prodding and pitiful pictures like I showed you before, my friend Misty in TN ended up buying the little boy--his name is now Snickers---Makenzie helped me drive them both to Bristol to drop him off--they were so cute together...



Other than that things have been going pretty good here. Makenzie seems to have finally gotten over whatever little bug she had going on and seems good right now--she has been practicing hard for her first piano recital in a few weeks. Other than that she spends alot of time practicing softball. She is on the 7-8 year old team which is a fast pitch league---seems a bit much to me but she does really good....





Here first game is this coming saturday---so we are looking forward to that---I guess that is it from here---will post after the game to let you know how it goes. Thank you for always checking in on us---things are good right now.

Monday, March 31, 2008 5:52 PM CDT

Well Im not even sure where to start in this entry--it has been a long week to say the least. Ill start with Makenzie---she had managed to pick up a little bug somewhere the week before Easter and ended up on IV fluids a few days and got a scope--she seems mostly better now and so with her we just have to wait and see. We were supposed to have a big easter dinner here with friends and then Laurie and her husband and all 3 kids ended up with the flu and so we had to cancel that--I was going to cook anyway--then the fridge went out--so we packed everything in coolers until we could cook and managed to still get a meal made for dinner---then my Dad was here helping me with yard work--I knew he wasnt acting right as he was having to rest alot--so I told Mom he needed to get a stress test scheduled--they went on home to WV and he ended up the ER the next day--turned out it was just a kidney stone but they looked at his EKG while there and made him take a stress test while he was there and he failed that miserably--so they shipped him back to my hospital on Tuesday--they did a heart cath on Wednesday and he ended up having bypass surgery Thursday--he went home today and is doing very well--so he and Makenzie are both on the mend I think. It has been a busy week to say the least. But Makenzie was at least able to enjoy her Easter---here she is hunting eggs...




And here she is with one of her best buddies, Victoria--what a blessing she is.....



During all of this we also made time to go over and see Koko---she is such a beautiful little dog--




Just a few more weeks until she comes home--she is kind of the shy one of the bunch--when I kept trying to take all of their pictures, she kept hiding her head--too cute...



So I guess that is about it around here---hoping for a much quieter couple of weeks coming up---Ill post if anything else decides to happen.

Sunday, March 16, 2008 7:06 PM CDT

Hello all--things here are going well. Not too much has been happening. This weekend was kind of exciting in that Makenzie got to make a trip to her Nana's without me--that all went well so we are hoping to be able to do more of that soon. On Friday night we were asked to come to Virginia Tech to speak for Children's Miracle Network--that was really alot of fun. It was for all of the fraternities and sorierties--I bet there were 400 people there. Made me feel a little old--but those were some of the cutest fellows we had seen in a long time. Of course Makenzie ate up that attention----


Yesterday we went back over to see Koko---it is amazing how fast they are all growing---

They are all just getting so cute--stating to play and bark---we cant wait to get her home.

I am trying to get my friend Misty to buy the little boy pup so the girls can have siblings---here is the picture I sent her of him---do you think it might work?---

I guess that is all for now---I will update again soon---I will also add a few new pictures to the home page. Sign the guestbook if you have time.

Monday, March 3, 2008 2:18 PM CST

As you can see from the above picture we went to see little Koko again this week. It is amazing how much they have all grown---one of the little boys didnt make it as he was born with a cleft palate and was unable to eat. Makenzie cried and cried over him--it was pitiful. But she did feel better after we went to see "her" Koko. She now weighs almost a whole pound...

I couldnt believe how much they had grown. Makenzie wallered her for an hour---Im not sure she knows what she is in for around here...


She had better rest now while she can..


Here is a picture of the three puppies, Koko, Kassie and Toby...



And lastly here a picture of Makenzie with the puppies mom Jeanie--Makenzie was telling her at one point to be sure and take good care of Koko until we came back--so cute...




I guess that is about it from here--nothing has been going on in the medical front which is always good. There has been so much illness going around I just cringe sending her out--but I have to let her go--so we will see how it goes---until next time....

Sunday, February 17, 2008 10:43 AM CST

I guess it has been a while since I have updated. No news continues to be good news. Other than a cold she is battling right now, Makenzie has managed to remain healthy this winter season. She has only missed a couple of days of school and she loves going there. We got a suprise yesterday as you can see from the above picture. We went over to my moms friends house to see the mama dog of the puppy Makenzie is going to get---when we got there we found 4 brand new puppies--2 boys and 2 girls not even a day old. How cute are they??? So baby Koko has been born and should arrive here in 8 weeks--



Here is a pictures of Jeanie surrounded by her 4 little pups....



Best of all we can go and visit her throughout the weeks so Makenzie can watch her grow. She already has a bed full of clothes and toys waiting for her---we are so excited---remind me i said that after the puppy phase hits us again. Other than that we are just waiting for spring--Makenzie signed up to play Tball yesterday so that should be interesting. Ill keep everyone updated. Thanks for always checking in on us--until next time............

Monday, January 28, 2008 6:46 PM CST

Sorry for the delay in updates---I will also work on getting new pictures on here soon. Things have honestly been pretty quiet as far as Makenzie's health goes. To be this far into the winter makes us all pretty happy about that. She has missed minimal days of school which is amazing. For her entertainment---a few weeks ago she wanted to go to the rodeo--so we of course went. She bought a cowboy hat and was thrilled with all of the horses. Then came time for the cow roping--and it all went downhill from there. The first calf took off running and the cowboy chased it on his horse--then he threw the rope around the cows neck and the cow flew up off of his feet--well she screamed and started crying because they were hurting the baby cows--this went on until every one around us was also crying--from laughing so hard. Even when the cows got up and walked away fine she was mortified. She just kept saying "this is hurting my feelings". So cute. Needless to say I think that is our last trip to the rodeo. We are supposed to go to the circus next week--hopefully that will be less traumatic. In other news we are waiting on the birth of a new baby (read puppy) that is going to come to our house to live. Makenzie is beyond excited (read we all are). It is a little Yorkie that a friend of my moms has. She is wanting to give Makenzie a pup and we just cant wait. She is already buying clothes for it. I will keep you all posted on how that goes. They should be born in about 2-3 weeks--yeah!!!! That is about it from here. Will post more soon.

Friday, December 14, 2007 6:44 PM CST

UPDATE DEC 28th
Makenzie had her new port a cath placed today without any problems. She has been a little bit sore this evening but other than that is getting over it pretty quickly. Thank you for all of the calls through the day to check on her---Happy New Year to all of you.




Hi all--I am sorry I havent updated in a while. It has been rather hectic here the past month or so---mostly with good things but still hectic. Makenzie's big news is that she turned 6 last week---her Golden Birthday---6 on the 6th. We had her birthday party here the weekend before her birthday---it was quite a production. It started with friends coming from TN---she and Emily got to play and we let them have their Christmas the night before---they are both huge Hannah Montana fans as we all had to listen to these guitars for hours...




The next day was party day---I had arranged for some guys to bring over some ponies for everyone to ride---they brought ponies with saddles and then one pulling a cart---they had a blast with those....



Here showing you how old she is...



She was all concerned about "the farmers" and she made them both wear party hats--they were so cute with the kids...

They even brought a new born calf with them so the kids could see it---too cute...


And of all of the favorite pictures we got that day, my favorite was of my best friend Laurie's little girl Sarah--she was fascinated by the horses...



She was so excited about everything that day--especially seeing her brothers and sister....



On top of the horses I had a friend come and do face painting--they all thought that was great...


It was just a great day all of the way around. We always remember our donor family, especially on days like that---we always add them to our day in one way or another...



That was it for that day. The next day after all of the excitement she starting getting sick and ended up admitted to the hospital on Tuesday. I was determined she wasnt going to spend her actual birthday in the hospital--so with Dr Hart's help, we loaded her on fluids and let her leave Wednesday night and we quickly drove to TN and went to the Dixie Stampede for dinner and a show and then watched the Gatlinburg Christmas parade---it was just a great time although exhausting. She had to get labs after getting back and it took many sticks each time--with all of that and with her needed IVIG on a monthly basis, I decided to have a port a cath put back in her--she is schedule for Dec. 28th--so hopefully that will go smoothly. Ill keep you updated. Makenzie is now waiting ever so impatiently for Santa to arrive. She also got to participate in the church Christmas program--she danced and danced--it was too cute--Ill put a clip on here after I get a copy. Ill post again after Christmas. Thank you all again for all of the support and we hope each of you have a wonderful holiday season---May God bless each of you. Merry Christmas.

Wednesday, October 31, 2007 8:17 PM CDT

Happy Fall and Happy Halloween. It finally has turned Fall here and the weather is beautiful. The leaves are finally changing--better late than never, and the mountains are beautiful. Medically there is not a ton to tell. Makenzie did have to start back on monthly IVIG and so she is not happy about that--she now has to get labs once a month and an IV put in for the medicine--but the benefits outweigh the rest. The meds should help her stay healthy over the coming months. There will always be some bugs she will catch--but this should help anyway. They have had some of the MRSA cases at her school but I try not to worry too much and just reinforce the handwashing. Her teacher and nurses are great about that. Other than that Makenzie has just been enjoying Halloween--I think she went trick or treating 4 times. She went as a Hello Kitty butterfly...

Here she is with her best buddies Katie, Sarah and Peyton....

And here she is after dressing up Nana's dog Kessie...

Ill just add a few more pictures here of this weekend at the pumpkin patch and their petting zoo--needless to say we did a lot of scrubbing here. Ill post more as things happen. She and I are going to Richmond next weekend to participate in a marathon (I am not really participating--lol--Ill be taking pictures)---we are going to help raise awareness for organ donation and to start raising some money for her trip to the transplant games---hope you are all having a great fall...

Tuesday, October 16, 2007 8:40 PM CDT

Hello to all--sorry I havent posted in quite a while. For the most part things have been going along rather quietly which I will never complain about. Makenzie is doing great in school and loves being in kindergarten. We have been so fortunate with her new school. They bend over backwards to make sure that she gets everything she needs and that she is safe. We couldn't ask for more in a school. Other than that we went to Knoxville 2 weekends ago to visit our friends Misty, Emily, Morgan and Braden. Emily had a multivisceral transplant 3 years ago and looks wonderful....

This was her 6th birthday and the girls had so much fun. They of course started arguing about 15 minutes after being together just like old times---but they love getting to visit one another. Here they are at the zoo....

They also thought it was pretty neat that they got to ride a camel together...


By the end of the zoo trip everyone was exhausted--here is Makenzie pouting about something. I cant even remember what it was but she was working it hard....

We had a great visit and it was so good for me to be able to see Misty again. We were so lucky this family came into our lives. Besides getting to visit with them the highlight of Makenzie's trips always seem to revolve around horses....here she is in Morgans riding hat and riding Morgan's horse, Sallie....




After this trip we came back home and then this past weekend my best friend, Laurie and I drove all of the children to the Peaks of Otter for a picnic. It was a beautiful day and the kids had so much fun....

This is Makenzie with her best Aunt Laurie---never have a clue what I would do without her friendship....

It was just a beautiful day and the leaves are finally starting to change....

By far this is my favorite time of year.
Healthwise we wont complain---other than Makenzie's immune levels are again low and so she will have to start going back into the hospital one day a month and get an IV for some antibodies. She is not one bit happy about that and will gladly tell anyone that listens. I think that is about it for now. Makenzie is looking foward to Halloween in a week or so--she will be dressing up as a Hello Kitty butterfly--Ill post more pictures then. Until then please just keep her in your prayers that we can get through this winter with minimal problems. Thanks for always checking in on us.

Monday, August 27, 2007 7:22 PM CDT

Well this one will be a long one I guess since I havent posted in a while. First I will start by saying that Makenzie is proud to a regular school going kid. Today was her first day of kindergarten and she loved it--she couldnt even sleep last night saying "Im just so excited Mama". She made it all day from 8-3 with no complaints but is already sound asleep preparing for tomorrow. She was so proud of her clothes and lunch box etc...

She has a new nurse going to school with her now and she was going to be a few minutes late today--Makenzie said that was fine that she could take care of herself and off she went---dropped her off at the door and she never looked back. Very confident little girl she is. She keeps saying she is going to be a cheerleader--not quite sure where that is coming from. The rest of her summer was alot of fun---Ill add pics of the last few weeks of summer. We went to the WV state fair with her Nana and Papaw---right when you arrived there was something new...

Im not even kidding---you go in there and watch a cow give birth. I didnt let her go up until right after the baby came out--and while everyone else was really quite Makenzie yells "Whats that hanging out of her butt?" I shushed her and explained that was the cord that connected the mama to the baby--then she asks "But why is coming out of her butt?"--I shushed her again and explained that is where the baby cow came out."--"IT DID NOT!!!!!" was her reply---too funny---everyone there was cracking up. She loved the fair---got to meet the WVU mascot....

She got to hang out with a sea lion...

And the highlight of her day was riding the grown up swings---over and over and over...she thought she was such a big girl...(that is her in the pink)

Next we went to a camp at Smith Mountain Lake which was awesome. We met up with some friends we havent seen in a long time---Makenzie had a ball with her friend Sarah...

They stuck together like glue...

She also got to try to rock climb and spent the days swimming...


After all of that she got to lead a parade here in town...

She got dunk her doctor that takes care of her here Dr Hart in the dunking booth....


And I guess most importantly this summer she was able to do her two favorite things...ride horses and play with her Nana and Papaw....


I guess that was about it for our summer. I cant believe it is really over already. Ill post more as we see how school goes. She has a great teacher so we are excited to see what happens. Thanks for always checking in on us---oh, and by the way, in case you are wondering--my pretty boys hair finally did grow back and he is cute once more...

Saturday, August 4, 2007 9:08 PM CDT

Sorry for the lack of updates but it has been a relatively quiet summer. Dont get me wrong, I am not complaining...just not much to tell. Makenzie has been having a great summer health-wise and enjoying most every day. Thankfully she has a next door neighbor she loves to play with--so that keeps her happy. She is heading for summer camp next week---it is here at Smith Mountain Lake and should be alot of fun. She is looking forward to horseback riding again most of all. Ill share some of her summer pics now since there hasnt been much going on---she spends most every day swimming--it is her favorite thing this summer...




She and her friend Victoria had several sleep overs which she thought was just great--at this, her first friend sleep over, they played in make-up and gave Kopper his first birthday party...


Here you can see poor Koppers first big summer haircut--I almost couldnt pick him out...


Other than that she has been trying to learn to ride her bike without training wheels--no such luck just yet---but she will get it soon enough--she loves her new bike though...

And so for now that is about it. I will post more pictures after her first summer camp experience. Until then--please say some prayers for some of Makenzies friends Isabelle, Ian and Emily---we were supposed to go see Emily this week but she has a bit of a bug---and the other two have some bigger issues going on. Hope the rest of you are having a great summer and Ill post again soon.

Sunday, July 22, 2007 8:19 PM CDT

Tomorrow ends the month long incubation period for those dreaded chicken pox and it seems she has gotten by unscathed!!! IT has been a very quiet summer---Makenzie just enjoys her days going to the library, riding her bike, and going swimming just about every day. We have no big plans for the rest of the summer--but I have a week off of work in a couple of weeks so I am thinking about trying to take her somewhere---not sure just as of yet. That is about it from here. Thanks for always checking in on us.

Thursday, June 28, 2007 7:16 PM CDT

Well here is a story. A couple of days ago I went to keep my best friends kids for a few hours--and to make a long story short while playing doctor together, Dr Makenzie diagnosed littel Sarah with "what are these bumps, mama?"---AAAGGGGHHHHH--Chicken pox. So needless to say it has been a fun couple of days. Lab draws and an experimental drug trial of a med to help her not get them we hope. But with the drug trial come multiple MD visits for monitoring---frequent labs--and most fun is having to watch Makenzie closely for several weeks to make sure she isnt getting them. If she doesnt we dodged a bullet--and if she does it is inpatient for IV antiviral medicine. Not the best start to the summer---it was bound to happen--just didnt think it would be AUNT LAURIES KIDS!!!! :-) Anyway--so we are just hanging out here now for the next few weeks and crossing our fingers. Not much else going on---Makenzie has started piano lessons and I am hoping it is something she will really enjoy. That is about it from here. Ill post more if anything exciting happens---hopefully not for a while.

Sunday, June 3, 2007 7:55 PM CDT

Yesterday was a big day for Makenzie. She graduated from preschool. Ill share a few pictures of her big day. This is her walking down the aisle to walk in...

Next is a picture of her making her speech at the microphone about the letter "O"...

As they graduated, their teacher told us what they wanted to be when they grew up. Makenzie has said she wants to be a doctor--go figure. Of course about halfway through the show the other parents were asking me if she really wanted to be a dancer---she was quite into the program--I think I need to put her in lessons...

She was very proud as she walked across the bridge to get her diploma...


At the end of the program she was in the middle of a group hug from the boys...

Here is a picture of how she has learned to write her name...

This year has really been incredible for her. Even with all of the worries and phone calls all year about other kids being sick around her, she has done incredibly well. She adjusted to the other kids and has fit in just fine. She would never have made it this year without her wonderful teacher Mrs. Caldwell..

Or without her nurse, Elaine...

I will always be grateful to them for the way her first year of school has turned out. Just hoping and praying things go as well as she transitions to her new school for kindergarten--she is already excited about that. Thank you from both of us to everyone that has helped her this year---the entire year has been a blessing..

Saturday, May 19, 2007 8:45 PM CDT

Hi all---sorry it has been a few weeks. That is a good thing for the most part--meaning nothing is going on here. Things have been fairly quiet--Makenzie started sporting a cold a couple of days ago and is now having some antibiotics. School is almost over for the year. Her graduation is in 2 weeks--Ill post her graduation picture next week when I get them back---too cute. Other than that just waiting on summer. I promise to post more over the next few weeks as things happen. I probably also didnt post before but our friend Caleb lost his battle on the 29th---such a sweet boy he was. Please keep his mom and dad in your thoughts as they figure out what comes next. Reminders around us every day not to take a day for granted.

Sunday, April 29, 2007 7:50 PM CDT

Four years ago today we began this jouney in the transplant world. In some ways it seems like yesterday and in some ways it is hard to even remember what life was like before all of it. Makenzie has had her ups and downs over the past 4 years, but she is living a good life now--all because of the gift of life given to her by another mom out there that lost their child. We are forever grateful to them for what Makenzie is today. She is so full of herself and has all the attitude she will ever need. Overall healthwise she is good---she has to have a few different tests done in the months to look at her bones and her kidneys that isnt going to enjoy much. Our trip last week to Pittsburgh was very nice other than them asking for these tests which are necessary. We got to see alot of our friends that we havent seen in a while and also had the pleasure of making some new ones as well. No other news from our house---just enjoying the days of good health and being grateful for every one of them. Please say some special prayers for our little friend Caleb in TX--he is having some major struggles right now and his mom and dad have difficult decisions to make. Caleb was transplanted 2 months before Makenzie was and they are very good friends to us. No other news here. Ill update again soon. God Bless to our donor family as our day to celebrate and be grateful is such a sad day for you. Keeping all in our thoughts and prayers.

Saturday, April 14, 2007 8:24 PM CDT

Not much to report here---a few days with bugs going around here but apparently Makenzie didnt get the worst of them. We are heading to Pittsburgh on Monday for a clinic visit and scope and CT scan and hopefully back home on Friday. Ill let you know how all of that goes. Thanks for always checking in.

Monday, March 26, 2007 8:54 PM CDT

Hi there---not much going on here. Things have been quiet for the most part. Not real plans for anything until our trip to Pittsburgh in a few weeks. In the meantime I was sitting on here fiddling with some new things for the web page. I was looking up places for us to go this summer--and so I started looking at last summers vacation and thought Id try this video on here. Im not sure I have all of the bugs worked out just yet--but you can see our vacation from last year in the little video above. Enjoy.

Thursday, March 8, 2007 8:36 PM CST

Hi all--not much going on here--I just wanted to share Makenzie's new Easter pics with you. She went yesterday and had these done along with her best buddies Katie, Sarah and Peyton. She has continued to feel well and looks great. She is starting back to school in the morning so I will quit saying that. Nothing else going on here--she had to get stuck for labs Monday and did much better this time--she was have to have an IV put in Thursday for some medicine and then have a CT scan done Friday---hoping she will do okay with that. Ill post more after she has these things done. Until then, thank you for continuing to check on us.

Saturday, February 24, 2007 11:17 PM CST

SO sorry I havent updated---I have no excuse other than being busy. That is good thing--meaning Makenzie has been fine and I have been able to work quite a bit. I promise Ill update in a day or two with some new pictures---but I just wanted to let everyone know that so far life is good without the line. It wasnt so good when it took the nurses 4 sticks to get an IV in her for her IVIG and that was quite traumatic---but hoping for a better experience this month. I am hoping she will be able to start back to school in a week or two--there have still been alot of kids out sick--and so without her port as back up I have kept her home. Actually I think she likes it better here--her nurse Elaine spoils her rotten and she gets all of that one on one---but I think she misses it in some ways. She is learning so much--is writing most all of her letters and her name is now legible. Just new things every day. We are looking forward to spring arriving soon. That is it from here--Ill get those new pictures up soon.

Friday, February 2, 2007 6:10 PM CST

Well, Makenzie is lineless for the first time since she was 1 day old. Not quite sure what I think about that yet. They removed her port today and were unable to place a new one. We saved a few spots in case of emergency to try later but didnt want to mess with those right now to see how she does without one. It is of course a positive move forward but it also means she will now have to get stuck for her lab draws and get an IV put in for her IVIG and the worst part is that if she gets sick I will have to take her inpatient instead of being able to care for her at home---this is the main reason I liked having her port. But we will try and see how she does. It was a long day and she is pretty sore but okay. Her lungs were trying to cause problems most of the afternoon--but after she finally woke up she seemed okay. She is parked on the couch for the night now and hopefully tomorrow she will feel much better. Thanks for all of the thoughts and calls today---Ill keep everyone updated with how she does.

Tuesday, January 30, 2007 6:05 PM CST

Well things had been running along smoothly until yesterday. I went to access Makenzie's port to get her lab work and it wouldn't work. I wont complain as it is 3 1/2 years old and we have rarely had a problem with it. So anyway, we went to see her surgeon here today--she will go to surgery Friday at 11am to have this port removed. He is going to try once to put a new one in--if it is a straight shot then great--and she will have a new port. If he has any trouble getting it in we will just try leaving it out for now. She will have to start getting stuck for labs and would have to go in the hospital every time she gets sick as I wouldnt be able to give her IV fluids at home--but we will cross that bridge when we get there. So we wont know until Friday which way it will go--there are pros and cons to either way--so whatever happens we will just ride it out. That is about it from here---Ill post more after Friday.

Wednesday, January 17, 2007 2:22 PM CST

I just wanted to update since it has been a while. Not much has been going on which is a pretty good thing. I decided to take Makenzie out of preschool for the few weeks to a month--she isnt very happy about that--but there are just too many kids sick in there and they are right on top of each other all day. She was having to leave about halfway through the day every day because someone else in the class was sick and she would hate to leave--so it is just easier to keep her out altogether for a while. That is about it around here. Just wanted to let all of you know that things are fine right now. Thanks for always checking in on us.

Tuesday, January 2, 2007 9:27 PM CST

We just wanted to wish everyone a Happy New Year. Makenzie had a great Christmas. She had more toys than she knew what to do with--I am still trying to get everything straight again. Santa did a quite a job this year. Makenzie had asked him for a pony--she thought he was going to bring a little toy pony for her dolls to ride on--wish I had a picture of her face when she saw Butterscotch...

He is quite a scary toy---but she thinks she is something. She kind of creeps me out from time to time because you will catch her looking at you and turning her head and twitching her ears...too funny...


The next favorite was by far Baby Alive--she has been th rough about 80 diapers now and counting---Santa also brought her a crib for Baby Alive and those things she hasnt put down since Christmas day...

She also has enjoyed her Easy Bake oven although I havent let her cook very much with that one yet---something to do in the next weeks...but she is ready when the time comes...

We made several trips back and forth to WV over the holidays. Makenzie got to visit with her cousins that she doesnt see nearly enough. All of the boys were so good with her...



That was about it for our holidays. She has felt pretty good although has never quite gotten back to normal. She had a scope and biopsies done last week so we are waiting to hear back about those. I am keeping her out of school this week until I hear back from Pittsburgh. That is about it from our house. I would like to ask for special prayers for some friends of our, the Nobles. They lost their son Kyle last week--he was 8 and had been on tpn for a long time. We have known Donna, Rich, Kelsey and Kyle since we first began the tpn journey 5 years ago. They are a great family. Ill post again when I hear back from Pitt.

Wednesday, December 20, 2006 9:11 PM CST

Im sorry--I know it has been a while since I posted. Things have been hectic here to say the least. Let me try and catch everyone up from where I left off. The next thing to happen in our lives after Disney was Thanksgiving. Makenzie got to dress up as a pilgrim to go to Thanksgiving dinner at her school...

Then on Thanksgiving evening Makenzie decided to lose her very first tooth..

She was so proud of that--so was I until she informed me of how the tooth fairy brings whistles---I was like--"are you sure?"---where was the tooth fairy going to find a whistle on Thanksgiving night with all of the stores closed? So she went along with the discussion that the tooth fairy was taking the night off to spend with her family--so she waited until the next day---can I tell you how much fun it was to help the tooth fairy find a whistle on Black Friday? Good thing I like to shop anyway. The next big event in the house was Makenzie's 5th birthday. All of her friends were here--including her little transplant friend Emily that drove up from TN. Dixie the clown was at the party and was a huge hit--the kids loved her and so did we as we didnt have to occupy any kids at all--she kept them busy the whole time...

Here is a pic with all of her friends after Dixie painted their faces and made them balloon animals...

Now all that is left is to get ready for Santa. Makenzie dressed as an angel for her school play--so cute--she loves to perform on stage...

For some reason or another Makenzie has picked this week to get sick. We are hoping for a quick bug but who knows. She has been hooked to IV fluids at home here for 2 days. I am going to recheck her labs tomorrow and we are going to try and avoid an inpatient stay or a trip to Pittsburgh before Monday if we can. Not sure if that is going to happen or not. I will try and post an update as soon as I know more. I just want to wish each of you a Merry Christmas and thank you for always being here to support us. We would never survive without our friends and family. God Bless.
Oh, and I just wanted to add this...a few weeks ago I got an email from a friend of some friends of ours in TX wanting Makenzies address to send her a birthday gift. Needless to say I about fell over when the most beautiful picture arrived at our house. It is a laser burned wooden picture of a little girl and a horse that is gorgeous. I am hanging it in Makenzies room tonight. Problem is I dont have an address or a name--so if you are checking this page please write me. I have the name and address that was on the package but it is different from who signed the back. I just want to make sure I get to thank you again. I LOVE it--and on the back it says--Happy Birthday 2006--God Bless You and Your Donor Family---how awesome is that--thank you again.

Tuesday, November 21, 2006 7:17 PM CST

Sorry it has been a while since I last posted. Makenzie's trip to Disney World went off without a hitch. We all had a great time. She was great on the car ride--never complaining either way. I think of all of it her favorite part was getting to meet all of the characters and getting their autographs. She liked the meeting the princess' the most...



We even got to have dinner with Cinderella in the Castle..

The Fairy Godmother and Mice were there too..

My favorite people were there also--the whole Hundred Acre Wood Crew...



We couldnt have asked for a nicer trip. Makenzie stayed well the entire time and the weather was beautiful. She loved getting her face painted every day..

One of the most fun things we did was watching her at SeaWorld---she would get so excited watching the dolphins--

And no Disney trip would be complete without Mickey..

And Minnie...


I am just thankful she was well and able to enjoy it so much. We were all exhausted at the end of each day but it was worth every minute. I spoke a bit too soon about her staying so well as she decided to get sick after school yesterday--but hoping after a day or two of IV fluid she will be back to herself. We are hoping to head to WV tomorrow to have Thanksgiving with Nana and PaPaw---we have so much to be thankful for this year. Her 5th Birthday is right around the corner--hard to believe. We hope each of you have a wonderful holiday weekend. Thanks for always checking in on us. Ill add a few more photos to the photo page but also add here just one more of that sweet little pup, Kopper with Nana's dog Kessie--they are quite the crew. Happy Thanksgiving to each of you and God Bless.

Sunday, November 5, 2006 6:36 PM CST

Just wanted to share Makenzie's first school picture. Not quite sure what happened with her bangs--lol--but too cute anyway. So hard to believe she is almost half way through her first year of school. She has missed quite a bit--but she loves to go. Things have been quite around here. We had a nice Halloween...

She wanted to be a purple Care Bear--so that was easy enough. We went with her buddies Katie and Peyton and Sarah....

And her half siblings were nice enough to come help us wrestle all 4 of them around the neighborhoods...

Other than that we have just been enjoying the beautiful fall here in VA....

It has been a great fall here. The leaves have been in full color a few weeks now--but unfortunately now they must fall. I spent hours this weekend getting a bunch of them up--Makenzie enjoyed playing in them...

That is about it from here. We are now waiting with bated breath for our trip to Disney next week. I all but squirt her in Clorax everywhere we go---we will see how it goes. I probably wont post again until we are there or after getting back--depending on internet access. Thanks for always checking in on us.

Saturday, October 28, 2006 9:06 PM CDT

Things for the most part have been quiet around here. I have been working alot which takes up a bit of my time--so Im sorry I dont update quite as much. Healthwise, Makenzie has been okay--not perfect but okay. She has high outputs for a few weeks but a scope showed nothing to be too concerned about--so we will just continue to watch her. I have a few pictures to share---first I wanted to show you all Kopper's new pictures--he is just the sweetest dog....


We just enjoy him so much--he lets Makenzie drag him around the house and rarely complains. As for the last few weeks--well, a couple of weeks ago we headed to Knoxville to see our friends, the Rays, for Emilys 5th birthday party. They had a blast although Makenzie decided to get sick in the middle of the party---I figured it was going to be something big--but she said she just got sick from riding the haywagon. While we were there we took the girls to a little festival they were having where Emilys sister Morgan clogs---they had Makenzie and Emily get out there in front of everyone at the fair and dance..

They thought they were so big---at the end they gave each of them a first place trophy--they were both so proud--Makenzie kept asking when her next show was---lol--maybe I should get her in dance lessons...

The next day before we left we were able to take the kids to Gatlinburg to the Aquarium which was very nice--the fall decorations in Gatlinburg were beautiful..


The rest of the time has been pretty uneventful. We were able to go to Makenzies little cousins 1st birthday which she just loved--here is a pic of here with her little cousin and 2 of her half-siblings---it is great that they are able to visit each other...
.
And so that is about it from here---we ask for special prayers for Makenzies little friend Caleb that is waiting on his second set of organs and also for our friends Christie and Destiny that finally made it home to TX after 3 years of being in Pittsburgh---hoping you guys stay home for a long time. Ill post more in the coming weeks---things are going to be pretty busy here for a bit---Halloween activities start tomorrow for 2 days--and then we are going to Disney next Friday--trying to keep that low key so Makenzie will stay well for that trip---it should be a doozy if she will cooperate. Thanks for always checking in on us---ill post more soon.

Sunday, October 1, 2006 9:24 AM CDT

Things have been quiet around here for the most part which is a good thing. Makenzie is loving preschool even though she has missed quite a few days--not so much because she has been sick but because a GI bug has been making its way around her classroom so she has had to stay at home. Here she is in her class...

Hopefully she can start back this week. Her teachers are great and we couldn't have asked for anything better for her than this preschool. Here she is leaving for her first day of preschool.

Other than that not much is going on. The weather is quickly changing here and the fall weather is beautiful. By far my favorite time of the year. Here is Makenzie sporting her fall outfit...

And another one of her with her puppy, Kopper...

Kopper is about the best thing we have done in a while. Makenzie just loves him and he lets her drag him all over the house without complaining. Hoping the potty training kicks in soon---his only bad quality.
That is about it from here. Hopefully things will continue to be quiet. We are heading to TN next weekend to see Makenzies buddy Emily which should be fun and then looking forward to her first trip to Disney World in November. Trying to keep that low key so maybe she wont get sick before time to go. We have a special dinner planned for her with Cinderella in the castle which she is so looking forward to. Keep the prayers going that she will stay well until then. Guess that is about it---thanks for always checking in on us.

Monday, August 21, 2006 9:19 PM CDT

Update---Makenzie started preschool on Monday--she decided she wasnt going to do half days so she is trying all day. Monday-Friday 8-3--seems like alot to me--but we will see how it goes. On her first day as I was dropping her off she asked if she could have a kiss before she got out--I said sure so she jumped up and kissed Kopper and left. Guess she is fine with it. I on the other hand havent known quite what to do. I will update more as things happen--oh, and speaking of Kopper--Ive had many people write and say he looks like he is going to be so big. Thought Id add a few more pics to put him in better perspective--he is all of about 5 pounds right now and about 6 inches tall--hoping he doesnt grow to big...












I am sorry it has taken me so long to update--things have just been BUSY aroung here. Starting with the above picture---this is the newest addition to the family. I had been talking about getting Makenzie a dog for a while now--had even called the guy about putting a deposit on a West Highland Terrier that I wanted--but as usual fate steps in. Mom had taken her dog to get her shots and called saying someone found a puppy on the side of the road and did I want it--I said I didnt think so--then they emailed me a picture--needless to say Kopper came hom yesterday. He is the sweetest little guy---Im not looking forward to the potty training again---but he loves Makenzie and is a sweetheart. As for the rest of the summer--Makenzie spent most of the summer doing her favorite thing---swimming!!!

She spent a great deal of the summer in our friend Shelley's pool having a blast even though last week she ended up with a bad swimmers ear with temps of 102---strange to have a normal kid illness around here. Then we have been in Pitt for 10 days. Makenzie went on her first sleep over with her friend Isabelle--I figured Id get a call to come get her in the night--she could have cared less where I was. She called the next day and didnt want me to come get here and screamed when I did--she is quite independent. While we were in Pitt she also got to go to her friend Destiny's birthday party----

We got to spend alot of time with them this week which was great since they will be heading back to Texas after being in Pitt for over 3 years---Makenzie and Destiny got to go to the Wiggles concert...





And then also thanks to them, and some nice gentleman that donated some awesome Pirates tickets, got to go to a Pirates game and have dinner in the Home Plate Club and had seats right behind home plate---it was so cool...



Later that night one of the other parents asked her about the game and said "Who won?"--she looked at them like they werent so bright and said "It wasnt a race, it was a baseball game!"---too cute.

I think that is about it on the fun front. Makenzies scope and biopsies went fine--we were able to stop a few meds too. She is going to get IVIG once a month for the next 6 months at least--so she has to keep her port--but that shouldnt be a big deal. She starts preschool next Monday--very exciting stuff--I think that is it for now. Ill post more pics after school starts. Thanks for always checking in on us!!!

Thursday, July 6, 2006 8:58 PM CDT

Sorry it has taken me a little while to update about this vacation---not even sure where to start. Makenzie wasnt feeling the great the day we left--I ended up even flipping a coin about whether to go or not, but I ended up deciding to just give it a try. Well, after a cancelled flight and having to stay a night in Chicago and then lost luggage, she ended up getting admitted to the hospital in Missoula the next day. She thought it was all quite neat--I did not. The next day they decided to fly her to Seattle rather than Pittsburgh since it was closer and we got to see her old transplant surgeon that left us and moved to Seattle--that was a treat---Mean Jorge was the same as ever---it is always a treat to see him again....

While at the hospital there Makenzie tried CoCo Puffs for the first time and said "Man, Dr Jorge sure has good cereal at his new house doesnt he?". Very cute. On our last day we got out to see Seattle a little bit--what an awesome city. I think I could live there if I had to. We even made it to the zoo before our plane got there--Makenzie had a little chat with one of the statues there...

After a week in Seattle we made it back to Montana and decided to try and go on to Canada which turned out fine.


Banff was absolutely beautiful. Pictures would never do it justice. The mountains there made even the mountains in Montana seem small.

Makenzie was more excited that they had a playpark at the hotel. She would ride in the car 8 or more hours a day and never complain once--she is such an awesome traveller. After a few days in Banff we came back to Montana and then drove back up to Glacier National Park..
Makenzie thought it was pretty neat because when we got to the top of the mountains she got to get out and play in the snow in the middle of June....

Even made a small snowman...

After we got back from Glacier, Makenzie and I drove to Salt Lake City, Utah for a few days to see our friends the Freis. Their daughter Markelle was Makenzie good friend that passed away in Feb. It was so good to see everyone there. We also got to see some friends that were in town for a conference there. Here is a pic of Makenzie with Kyle and Colyn--I wished we could have visited more...

After that we came back to Montana for a few days before going home. As you can see with the top picture on the page and some of these others, Makenzie did have a FAVORITE part of vacation. She got to ride Sugar and her new friend Zues several times. I cant say thank you enough to Debbie, Sugars mom for going out of her way to make sure Makenzie got to ride. She talks about nothing else....


The last night there she even got to go on a trail ride with the adults...

There were many great sites out there, but nothing compared to the look on Makenzies face when she was riding--it was priceless. So overall it was a great vacation, even with the sidetrip. Makenzie got to play in the parks and on the last day there we were at a park---she knows there is a lot she just cant do and so she doesnt even ask--and the park we were at had a bunch of water fountains---i told her--you can go over there and play if you want and she looked at me like I was Santa and said "Are you SERIOUS??? FOR REAL????" It was so cute--she just had a ball there...


Well, we are home again and all is well. Medically the thought is that she is dropping some of her immune system and that may be why she keeps getting sick. So we are keeping her port for now and she may need IVIG for a while. We will just play it by ear and see how it goes. I am very thankful we were able to go out West and enjoy our time there---times that like always makes me especially grateful to Makenzies donor family that made all of this possible. Ill put a few more pics on her photo page. Thanks for all of the calls of concern while we were gone. I will post more soon.

Saturday, June 24, 2006 1:06 AM CDT

Just a quick update---Makenzie did make it out of Seattle on Sunday and we flew by the seat of our pants and went on to Banff, Canada on Monday--it was beautiful and we had a great time. She started having high output again so when we got back this morning we got labs done and they werent too bad--so we are going to try and finish this vacation up---she is feeling fine and got to spend this entire evening riding horses and that has MADE her vacation. We are going to try and go to Glacier National Park tomorrow and then I may head down to Salt Lake for a few days next week if she is okay. I have a TON on great pics that I will put on here when I get a chance in the next few days---thanks for checking in on us--Ill post again soon....

Friday, June 16, 2006 11:15 PM CDT

Vacation of course hasnt gone as planned---but it has been okay. Makenzie flew to Seattle on Tuesday and was scoped on Wednesday---it looked pretty good and her biopsy seems fine. Guessing it was some bug she picked up---one of her immune levels was really low--so maybe that is what caused it. They gave her some IVIG today and Dr Reyes thinks maybe she will just have to get periodic doses of it for a while. It is something we will certainly start looking into when we get home. Speaking of Dr Reyes---it sure was nice to see him---we so wish he had never moved out here---but it is a good match---if we werent so far away we would visit more often. So anyway, Makenzie started doing better yesterday and if her labs work is okay in the morning we are hoping to leave back for Montana tomorrow. Maybe we will make it to Canada afterall---but I wont hold my breath. As for now, we will just be thankful she is turning around so quickly. This hospital is beautiful and more hospitals should pattern themselves after this one--it is very family oriented which makes it so nice. Ill post more tomorrow if we get out of here---keeping our fingers crossed........

Sunday, June 11, 2006 10:55 PM CDT

Monday update---Makenzie spent the day in the ER in Missoula and it was decided that she needed to be admitted this evening since her labwork never made it quite back to normal. So after discussing our options, the plan is to try and send her to Seattle tomorrow to see Dr Reyes for a scope since we arent all that far from him. If insurance balks on all of that then we will head back to Pittsburgh---United said they can get us there as a medical emergency on June 18--I see a pattern with United this trip. Will try and avoid them in the future. So anyway, Ill let you know which way she is headed---if she can just go to Seattle a few days and get a biopsy done, then maybe we can still salvage some of our trip out here. Makenzie though has loved it--she thinks this is vacation---she has met new doctors and nurses and everyone is spoling her rotten---not sure she will want to leave. Ill post more soon.........





Never a dull moment. So anyway--here is the story this far. Makenzie was feeling great on thursday--so friday I did labs and pondered whether or not we should leave on vacation. I decided to go ahead and try and go. So we flew from Virginia to Chicago Saturday. Then after sitting in the airport for 3 1/2 hours they cancelled out connecting flight to Montana--so we had to stay in a hotel in Chicago. We got up at 4am this morning and had to take a different route and got sent to Denver then we had 10 minutes to make a connecting flight to Missoula--but after running through the airport we made it. Well we made it---but our luggage didnt. So another hour spent trying to find the luggage that was still resting in Chicago. But someone they got it here about 5 hours later--so that wasnt so bad. But through it all Makenzie still isnt looking right. Her last EBV numbers were up some--but not sure what the cause. I was hoping it was just going to go away but that isnt to be. So tomorrow Ill be finding a place to get labs done and probably some IV fluids somewhere. Not the start of the great vacation we were looking for but she has had a blast today---playing with Aunt Michele and Brenda and Glen and Dessa and Baileyboy---she already went to see Lancelot and Camelot but was a little scared to ride them since she didnt have a saddle---but she was happy to just lead them around the ring. Then she went looking for Sugar the horse but she was out on a ride---hopefully she will get to see her soon. Ill post tomorrow after I figure out what to do with her---still hoping maybe this is just a fluke and it will go away.

Wednesday, May 24, 2006 9:32 PM CDT

Everything continues to go well here. Makenzie went to her first practice day at preschool. We went to see if it really something we want to try. She thought it was the greatest thing. After about 20 minutes she had already made 2 friends and they hung out through the day and had lunch together. It was very cute. She is supposed to start 5 days a week in August---I give her about 2 weeks before she ends up in the hospital with something---but we have to try. I am planning on starting her at half days but I dont know how long that will last---she screamed when I made her leave at half day the first day saying she wanted to go take a nap with everyone else. So I will see how it goes and decide. Just hoping she doesnt get TOO sick. Her teacher is wonderful. She was helping by making sure everyone washed their hands alot and wants to learn how to handle Makenzies medical issues herself. I just want her to have as normal a preschool experience as possible. Other than that not much is happening. Nana and Papaw are here for a few days to help me with some various house projects---then 2 more weeks and Makenzie and I are off to Montana. Very excited about that. Our friends there have said they have access to a couple of horses Makenzie can ride whenever she wants--there names are Camelot and Lancelot--she has been calling them Lance A Lot and Dance A Lot. She just loves horses. We havent dont any labs work in a couple of weeks so I am going to send some next week to make sure all is well before we leave. We will be gone for a little over three weeks but hopefully I will have some computer access while we are there. Ill post again after labs.

Sunday, May 14, 2006 9:13 PM CDT

Hope all of our "mother" friends and family had a great Mothers Day. We arrived back in town a few hours ago from camping in TN all weekend. We had a great time and it is beautiful there. So grateful Makenzie is able to go out there and enjoy so much about life. She just has a blast in everything she does. Other than that things have been quiet around here--you will never hear me complain about that. Ill post more soon.

Friday, April 28, 2006 9:53 PM CDT

A few hours from now and it will be three years since Makenzie got her call for transplant. Three years!!! I can still remember all of that like it was yesterday. Calling her Aunt Laurie in the middle of the night who had just found out she was pregnant with what turned out to be Peyton AND Sarah, having the huge confusion with the credit card company over the flight payment and having to call all kinds of people to find a card for the flight until it got straight, arriving in Pitt around 5 in the morning and then them taking her away right around 4 that afternoon. Saw her again right before midnight and her new life began. It hasnt always been easy for sure, but we are so thankful to have her here with us and getting to watch the person she is becoming--and what a person that is. Smart, funny, beautiful and full of life. Say a special prayer tonight for Makenzies donor family as this is also an anniversary of their loss. Makenzie would never be here without them. Thank you whoever you are for this wonderful little girl......


Oh and also wanted to let you know that our friend Logan's mom had a beautiful healthy baby girl yesterday--welcome to the world Miss Avery.

Sunday, April 23, 2006 9:19 PM CDT

Im sorry it has been a while since I posted. Things have been busy---good but busy. And with the change in the weather to spring, it is hard to keep Makenzie inside. I wont complain though. She had a wonderful Easter---we had many friends and family here all day. I think there were about 25 people running around the house all day. Kids everywhere running and laughing--just a great time. Got to spend some time with old friends that were in from OH which was so nice. Then a few days ago she got to spend a few days with her half-siblings. Could be kind of a weird situation, but they just loved being together and getting to know each other. I am hoping they will get to spend more time together this summer. As some of you may know, April is Organ Donation awareness month. I have spoken to many groups over the years about the importance of donation, but today I was asked to speak once again to a very different group. We went today to speak to a large group of donor families that were gathered in remembrance of their loved ones. It was such a special event. Special for us in that we got to say a small thank you to all donor families today and special for them in that they got to see Makenzie, the product of what organ donation can do. As usual she made quite an impression. Then to end up her day today, she went to see the Care Bears on stage. Her and her little friend Taylor had a ball. She danced and clapped and yelled the entire time. She just loves seeing shows like that--so now tonight we are tucked into bed with about 6 Care Bears all around. Grateful to be here. Makenzies 3 year anniversary is this coming saturday---where does the time go. For those of you here locally, there will be a story some time this week about the event we went to today in the Roanoke Times and also in the Bedford paper--so keep an eye out. Ill post pictures from the last few weeks soon. Please send out some special prayers this week for some of our friends---Carter got organs yesterday--pray for a smooth go this time around as this is his third transplant. Also keep our little friend Emily and her family in your prayers as Emily is just having a few issues that we need to stay just small issues and nothing more. Lastly, keep good thoughts for our friend Logan's mom, Kara, who will be having Logans little sister this Thursday. Praying for a smooth arrival for Miss Avery and nothing but good health for her. Ill post more soon.

Saturday, March 25, 2006 9:05 AM CST

Update: Absolutely nothing has been going on which has been good. Makenzie got over her bug after about 2 weeks and is back on the mend. We are just enjoying a nice quiet spring so far. She goes for her preschool registration Thursday which she is excited about although she doesnt understand it doesnt start until August. She is getting quite the 4 year old attitude. Last night I told her she couldnt have any more Koolaid and she threw the pack at me with her hands in the air and said "FINE!". Gotta wonder where she gets her attitude. That is it for now---Ill leave her last update on here so I can leave her pics up for a bit longer. Ill post more soon.







I just wanted to write and let you all see some of Makenzies new Easter pictures. Ill add a few here and some to her photo page. Everything is going okay here--she did fine her first night back off of IV fluids--so now we just have to see what her labs look like on Monday. Nothing much else here to report--glad for a few quiet days. Nana is here so I am working for a few days---good for all of us. Hope you like her pics.....
Here she is with the bunny....



Just a few other shots---hard to believe what a demon she can be when she looks so sweet....




Thanks for checking in on us--Ill post again after her labs on Monday.

I am sorry it has been so long in between posts. Everything for Makenzie has been going fine. She has felt good for a while now. She was able to get to the circus with her friend Taylor...

They had a great time and Taylors mom, Leslie, and I both got away with only having to buy a $5 balloon...

I thought that was great. Then, all last week we made a trip to Pittsburgh for her scopes, biopsies, and CT scans. All of that was fine and if she will continue to do okay they will remove her IV port when we are there again in June. This trip we planned out well so that we were able to visit with many different friends. Emily and Misty joined us which is always fun. It takes Makenzie and Emily about 1 hour until they are arguing over toys---but they love being with each other...

We also got to spend time with Kara and Grant and Logan which we havent seen in many months...

It is amazing to see Makenzie and Logan together again---they both have grown up so much since transplant. Kara is also growing in her own way---lol---cant wait to meet the new baby. We also got to see Tyler...

He has changed so much since we saw him last---he was just a little scrawny baby last time---he is far from that now and just a joy to be around. I could steal him and bring him home. Then there was Ian...

He has been having such a rough go of it---but as usual it was great to see him and see his great spirit shining through---hang in there buddy. We also got to see Destiny and Isabelle and their crews....


After getting a good report we headed back to VA and stopped to see Hannah and her dad...
She looks better than I have seen her look in ages. It was just a fun trip and so good to see everyone. Things have been hard with our transplant family as of late. We lost another child last week--Alli Beth was a sweet little 4 yr old girl from KY that we have spent tons of time with---she will be greatly missed. Ian is still needing prayers as decisions are being made about what to do in the future. Our friend Caleb is still struggling and had 4 surgeries in the past 2 weeks. And now our buddy Justin is struggling in the ICU on the vent and continuous dialysis---when these kids get sick they do it in a big way. Please keep all of these kids in your prayers---the sick ones to get better and the ones that are well to stay that way. I will post again soon. Makenzie and I are going to Staunton on Friday to speak for the state organ donation meeting. Yesterday we went by and spoke for the Childrens Miracle Network for their yearly telethon---just very nice things to be involved in. Makenzie has opened alot of doors and alot of eyes in her short life---simply amazing.

Wednesday, February 15, 2006 9:28 PM CST

Makenzie and I did end up making the trip to Salt Lake City. Snow and all we flew out Sunday morning and then got back into town a few hours ago. I am SO glad we were able to go. Not sure what to say about the whole experience. What do you say about the funeral of 10 year old. It was beautiful, we were proud to be a part of it, and it is just plain wrong. Please continue to keep Heidi and all of Markelles family in your prayers---they have so much healing to do. Ill post more soon.

Friday, February 10, 2006 8:11 PM CST

Our world is less bright today. This picture is of Makenzie and her friend, Markelle Frei. We met Markelle and her mom, Heidi when Makenzie went for transplant evaluation in Pittsburgh. Makenzie and Markelle were roommates that week and she and Makenzie became great friends, as did her mom and I. Markelle received her Gift of Life four months before Makenzie. She had a few problems at first that kept her in Pittsburgh the whole time Makenzie was there. So will lived next door to each other in the hotel. The girls played every day and it was a gift to get to know such a special little girl. She never let her illness get her down and she was always happy and smiling. I am very sad to say that Markelle passed away early this morning. When you see some of these kids doing so well it is easy to forget that they are all ticking time bombs and it can change in a moment. Markelle got sick 3 months ago and was waiting on new organs when this happened. We are thankful to her donor family that we have had the last three years to know Markelle and her family. Please join us to pray for peace for her Mom and Dad, Heidi and Brandon, her big sister, Mikalie, and her little brother, Gage. There is a hole in this world that will never be filled. Fly with the angels Markelle, in a body that will never be sick again. We will miss you.

Tuesday, January 24, 2006 9:15 PM CST

I am glad to say I have nothing to report. Things have been quiet around here for a while now. I am not complaining. I have been able to go back to work 2 days a week right now which has been nice--a lot to relearn though. Makenzie loves when I am at work because she is gets to stay with her Nana. We went and did an interview for Childrens Miracle Network yesterday--she was fairly shy which suprised me--but she did good. I promise this week to work on getting some new pictures to put on here. She is going to go to the circus next Friday--so Ill be sure to get some pictures there. Until then we hope all remains quiet. Just wanted to let you all know that things are going well.

Tuesday, January 24, 2006 9:15 PM CST

I am glad to say I have nothing to report. Things have been quiet around here for a while now. I am not complaining. I have been able to go back to work 2 days a week right now which has been nice--a lot to relearn though. Makenzie loves when I am at work because she is gets to stay with her Nana. We went and did an interview for Childrens Miracle Network yesterday--she was fairly shy which suprised me--but she did good. I promise this week to work on getting some new pictures to put on here. She is going to go to the circus next Friday--so Ill be sure to get some pictures there. Until then we hope all remains quiet. Just wanted to let you all know that things are going well.

Wednesday, January 11, 2006 10:00 PM CST

There isnt much to journal right now---which can be a good thing. Makenzie and I had a quiet New Years and it has remained that way thus far. She has remained very healthy (ssshhhhhhh) and has gained 5 pounds in the past three months---unheard of for her. Ill quit talking about it because as soon as I do something will happen. We are quietly making plans for a few trips this summer. Hoping to get her to Disney for a few days in March, then back to the beach in May and (crossing my fingers) we are supposed to go back to Montana in June. We are planning on going to Banff for a couple of days which I think is pretty exciting--some place I have always wanted to see. That is about it from here---oh, except that I have started back to work a little. It has been almost three years since I have been back to work at the hospital and it has been so nice. Just being back out and being productive in the adult world can be liberating. Ive only been two days thus far and hope to be able to go at least one day a week after things settle down there---it is all new again. My mom has been coming here and watching Makenzie the days I work which they both love. Makenzie gets spoiled rotten when she is here. Thats okay I guess. That is all for now---we arent scheduled to go back to Pitt until February---hoping to keep it that way.

Wednesday, December 28, 2005 10:10 PM CST

We made it home safe and sound. We all had a wonderful time at the beach. The gifts they got her were amazing....but the highlight of her (and all of our) trip was her getting to spend the day with Santa. He came up to her condo to see her....

After he spent some time with her there he went across the street to the Holiday Inn where they had cookies and drinks and had a reading of a Christmas story. Makenzie was all smiles...

She wouldnt let Santa out of her sight. She would just smile and shake her head--she kept saying to him, "I just cant believe you came all the way here from the North Pole--I just cant believe it". We were all cracking up. She followed him everywhere. When I finally convinced her to let him visit some of the other families she would just walk with him and stand behind him until he was done and then get his hand and walk him to the others. Fortunately most of the other kids were older so they didnt mind Makenzie taking up all of his time. It was about the neatest day she has ever had--something she will never forget. While we were there she also got to spend alot of time with her Nana...

And her Papaw...

She made us go play putt putt many times as well---she LOVES it and cracks you up playing. Everyone always only gets to hit once and then she goes and gets the balls. But she did get two holes in one by herself. We hope to get to go back late in the spring. It is just an amazing group of people. They worked so hard to make sure she got things she wanted...mostly her new baby dolls... Annabelle

And this very scary Amazing Amanda...

The girl sure does love her dolls...

Once we got home she once again had Christmas--her first here in this house. It was so fun---every gift she got she would dance up and down and scream out whatever it was she got---so so funny....

It will certainly be a Christmas none of us will ever forget. We are so grateful she is feeling well and able to enjoy things again. Thank you to everyone that helped us make all of these memories and make this such a cherished year. We love all of you for loving Makenzie like you do. Please keep our friends Ian and Markelle in your prayers as they are both having a pretty rough time right now. Hope you all have a happy and healthy Blessed New Year.

Friday, December 23, 2005 6:58 AM CST

We all made it to Ocean City safe and sound. We are here with the Organization Believe in Tomorrow. You should all look on the internet at this group of people. We were here this summer and had the best time---then they called us a few weeks ago and wanted to know if we would bring Makenzie down for Christmas. How great it has been. When we arrived to the condo there was a HUGE tree FILLED with presents. It is almost crazy what all they have done for Makenzie. We were going to make her wait to open her gifts but finally gave in last night. She was screaming "I got the baby thatt cries!!!"---so cute. So many gifts----even things here for my parents and myself--and a basket FULL of dog toys and treats for Kessie and Kodak. I just cant say enough about this place. Everyone goes out of their way to make sure these kids are happy here. Incredible. Tomorrow Santa is coming to spend the afternoon here and then we will be having dinner. We will be heading back to VA on Sunday where Santa will have again come. Makenzie is a bit too spoiled---but she deserves it for all she has to go through on a daily basis. She is a bright light for all who meet her. Ill post more pictures when we get home. Hope you all have a wonderful Christmas holiday.

Thursday, December 15, 2005 8:02 AM CST

Makenzie had a wonderful birthday party. Over 30 people were here to help her celebrate her big day. Looks like Christmas happened early around here. She is just now figuring out what all she got and starting to play with things. Most importantly she has thus far stayed healthy and as you can see from her above picture, she is finally starting to gain a little weight. Anyway, back to the party. Many many friends and family were here. She also got to meet her half-siblings for the first time which was great. I hadnt seen them in 4 years---boy have they grown up. Hoping we get to see them more often now. As for the party---Makenzie thought her cake was great....

She keeps telling me she is OLD, now that she is four....

Her little friend Emily drove up from TN with her mom and sister to spend the weekend. Here they are with the storybear they brought her...

Emily is such a hoot--it was great seeing them again. Thank you to everyone that came out and helped Makenzie celebrate and for enjoying all of the fun and confusion. It made her feel very special. By the end of the party she was wore out....

It has taken her a couple of days to recover but is now back to her ornery self. We are trying to get ready to go to the beach next Thursday---hoping the weather will cooperate. It has been quite a winter already and it is just getting started. Please say some special prayers for our friend Ian and his family. He is having a really tough time right now. Ill post more soon. Thank you all again.

Tuesday, December 6, 2005 7:53 PM CST

SHE'S FOUR!!! So hard to believe. Today is what her friend Katie calls her "national" birthday--meaning her actual birthday---and her birthday party will be this Saturday. She had a very fun day today as well. We went to the mall this morning and then she got to go to the dentist for the first time. Some of you might not think that sounds like fun but she thought it was so neat. Then I took her to the big movie theater for her first movie--we went to see Chicken Little. She thought it was fin but fell asleep before the sky started falling. Slept through the rest of it---but it was a good nap anyway. After that she and I and her Aunt Laurie and Katie went out for her favorite pizza for dinner. Now we are just winding the evening down. Just so grateful she was able to enjoy her birthday so much. Hoping she stays well for the big birthday party saturday. Lots of people will be here---including her little friend Emily from TN driving all the way here for her party. Im sure it will be a bit overwhelming. Ill post some new pics after her party. I just wanted to say thank you to everyone that has helped us over the past 4 years--what a journey it has been. Sometimes it seems that the 4 years has just flown by--and then other days I wouldnt be suprised if she were 96. But we remain grateful for every day. Thank you all for all of her birthday wishes---she is one loved little girl.

Sunday, November 27, 2005 9:25 PM CST

Well Makenzie has finally perked back up--still coughing a bit but hopefully that will be the end of it. I just wanted to post a few pictures of her Make A Wish gift. Her play yard was brought 2 weeks ago and they had a little pizza party for her and her friends here at the house. She loves the play yard....

Here you can see alot of it....

She loves the slide....

And the swing...

And climbing up in the fort....

That is about all that is happening here. She is busy every day playing with her wrapped Christmas presents under the tree. She stacks them and unstacks them 20 times a day. She rubs them and smells them and then stacks them again. The paper is going to worn off of them long before Christmas. I hope she finds what is inside as much fun as the actual box it comes in. We are trying to get in birthday mode now--less than 2 weeks. She is very excited. One her transplant friends, Emily, is going to try and come from TN--she will be so excited to see her. She is supposed to go to breakfast with Santa next weekend if she is better. She just loves him. Last week at the mall she just ran through the barrier and was sitting in his lap hugging him before I even knew she had gone---too cute. That is it for now. Ill post more after her weekend visit to Santa. Hoping she is on the tail end of this flu. Thanks for all of the continued support.

Wednesday, November 23, 2005 8:21 PM CST

Happy Thanksgiving everyone. We hope everyone has a wonderful day tomorrow. Makenzie as per her usual wont keep things at an even keel, especially over the holidays. We went to my parents for Thanksgiving on Monday. This morning she woke up with a hacking cough and a fever. Because of the fever I had to bring her to the hospital for labs and a workup. Seems she may have parainfluenza. She has just felt yucky all day but fortunately she has been able to sleep most of the day away. There isnt much that can be done other than let it run its course. We were going to drive back to Nana and Papaw's this evening, but then Dad wasnt feeling great either--so we have decided to just ride it out here. Nana will come down tomorrow evening after they have dinner and my friend Laurie is going to send dinner over here for us. Never a quiet holiday around here. Hoping Christmas is much calmer. Ill post some new pictures this weekend. Make A Wish came and put in her playground which she just loves. Fortunately we had a few good days of weather so she and her friends could play. She has missed her swings so much---great to see her having so much fun. Even being here at home, we have so much to be thankful for this holiday. We never forget that. Hope you all have a great day. I will post again soon.

Sunday, November 13, 2005 11:35 AM CST

Makenzie's trip to Pittsburgh was for the most part uneventful. She loved flying in the plane and seeing her friends there. We only stayed 4 days which was nice. Her scopes and biopsies were good. We are trying to decrease some of her meds again, so we will see how that goes. They said if she stays well we dont have to come back until February. I wont hold my breath, but it sure would be nice. Winter time always brings along it share of bugs though--so I am never suprised if we have to go back. We are quickly approaching Makenzies 4th birthday--hard to believe. Some days it seems like it has flown by--but then other days it is still hard to believe it has only been 4 years of this life. She is very excited though and that is fun to watch. The first picture up there is of her in her birthday outfit. Ill add other new pictures to her photo page as well. While we were in Pittsburgh we did get her birthday and Christmas pictures done. The people up there did them when she was so sick last year and they have been very good to us--so we try and go back and get them done there. Ill add 2 other ones here.....

And I think this is my favorite this year...

So that is about it from our house. Hoping for things to remain quiet around here for the holidays. Ill get some pictures next week of when they come build her playyard. I am excited about having it here for her. Sending special prayers out this week for all of our special friends, but especially this week for Miss Isabelle who is now going to need a kidney transplant as well and for Miss Markelle, who after having issues here and there, ending up losing her bowel this week and is now back on tpn for now and will be relisted for organs in a year. Today was to have been her three year anniversary. Please send good thoughts and prayers for both of these families that are very special to us. Ill post again next week.

Saturday, November 5, 2005 8:02 PM CST

Sorry about the delay in updating. The computer hasnt been cooperating the past few days. Things have been going well here. Ill add some new pictures here and also on her photo page. As you can see from the above picture and also the others---that our her perfect Dora outfit that she just had to have was quite the bust. She has been all psyched up to be Dora for months---her friend Katie the same way with being Ariel---after searches and finding them both the costumes they HAD to have.....


You can see how well both of those went. The night before Halloween we were letting them try on costumes and Katie's little brother and sister were supposed to be Mickey and Minnie but the outfits were too big. So Makenzie and Katie put them on and the rest is history--they refused to be anything else. So hopefully next year they will still like Dora and Ariel. As it turns out I liked her much better as Minnie anyway--so I didnt complain. They went trick or treating 3 different times and had a great time each time but we are all glad for it be over now. Another fun thing Makenzie got to do last week was go to pumpkin patch. It was really alot of fun--she got to go on her first hayride...


Then they played in a big sand box that was filled with corn instead of sand---I like that idea...


She enjoyed picking up all of the pumpkins she could find and carrying them around...


Last night I took Makenzie and Katie to see Santa make his grand appearance at the mall. He landed in a helicopter while they waited. She was jumping up and down screaming--it was so cute. I forgot my camera of course. They had clowns and she had her face painted and just had so much fun. I asked her what she was going to ask him for and she named about 5 things--of course not 5 things that I have gotten--so we have decided she has to make a list and stick to it---lol. That is about it for the fun around here. She has been feeling great and I couldnt ask for more. We are going to Pittsburgh Monday and hopefully coming home Friday. I am hoping to start going back to the hospital to work a couple of days each month. I am very excited about working there again---it has been almost three years since I have been there and miss it so much. Even just a day a week will be great. Ill keep everyone updated as things happen and after her appointments next week. Thanks for always checking on us. All of your support keeps us going.

Saturday, November 5, 2005 7:37 AM CST

Sorry about the delay in updating. The computer hasnt been cooperating the past few days. Things have been going well here. Ill add some new pictures here and also on her photo page. As you can see from the above picture and also the others---that our her perfect Dora outfit that she just had to have was quite the bust. She has been all psyched up to be Dora for months---her friend Katie the same way with being Ariel---after searches and finding them both the costumes they HAD to have.....

You can see how well both of those went. The night before Halloween we were letting them try on costumes and Katie's little brother and sister were supposed to be Mickey and Minnie but the outfits were too big. So Makenzie and Katie put them on and the rest is history--they refused to be anything else. So hopefully next year they will still like Dora and Ariel. As it turns out I liked her much better as Minnie anyway--so I didnt complain. They went trick or treating 3 different times and had a great time each time but we are all glad for it be over now. Another fun thing Makenzie got to do last week was go to pumpkin patch. It was really alot of fun--she got to go on her first hayride...

Then they played in a big sand box that was filled with corn instead of sand---I like that idea...

She enjoyed picking up all of the pumpkins she could find and carrying them around...

Last night I took Makenzie and Katie to see Santa make his grand appearance at the mall. He landed in a helicopter while they waited. She was jumping up and down screaming--it was so cute. I forgot my camera of course. They had clowns and she had her face painted and just had so much fun. I asked her what she was going to ask him for and she named about 5 things--of course not 5 things that I have gotten--so we have decided she has to make a list and stick to it---lol. That is about it for the fun around here. She has been feeling great and I couldnt ask for more. We are going to Pittsburgh Monday and hopefully coming home Friday. I am hoping to start going back to the hospital to work a couple of days each month. I am very excited about working there again---it has been almost three years since I have been there and miss it so much. Even just a day a week will be great. Ill keep everyone updated as things happen and after her appointments next week. Thanks for always checking on us. All of your support keeps us going.

Thursday, October 27, 2005 10:45 PM CDT

Hello all. Not much of anything happening around here--so I thought Id just update and let you know that. That is good news around here. Makenzie is getting excited about going Trick or Treating Monday--she is going to be Dora. We are scheduled to go to Pittsburgh the next Monday for a week and then after we get home Makenzie will be getting her Make a Wish. We decided on something she could use around here instead of trip she probably wouldnt remember right now anyway. So on the Monday after we get back she is getting a "play park" built in our yard. One of the big wooden ones with tubes and slides. She is very excited. Since it isnt a good idea for her to be out in public parks much anyway, I thought this would be a good idea for her and something she can use for a very long time. That is it from here. Ill post new pictures after Halloween. Hope you all have a great Halloween. Thanks for always checking in on us.

Thursday, October 13, 2005 9:06 AM CDT

Sorry it has taken me a little while to update. The computer hasnt been cooperating. Things here are going well. Ill add new pictures here and to her photo album. The above picture is of Makenzie and her buddy Emily. Emily had a liver, small bowel, pancreas, and stomach transplant a year ago and is doing incredibly well. Makenzie and Emily were neighbors in the hospital and the hotel for about 4 months last year when Emily had her transplant and Makenzie had gotten so sick. They became great buddies as did her Mom and I. It has been such a blessing to get to know their entire family. I took Makenzie to Tennessee last week to see them and we took everyone camping for Emily's 4th birthday. It was Makenzie's first camping trip....

She loved the tent although we had to sleep in a pop up camper at night because she and Emily both need electricity at night. But they took naps in there and played during the day. She also got to ride in the back of a pick up truck at the campground which she loved...

We let them do that so we could take them fishing at the lake. Makenzie caught her first fish...

Apparently the fish tales start early--she was calling everyone to tell them how "HUGE" it was. She just loved it until it was time to take it off of the hook...

Then she started thinking it was rather nasty. The girls just had a great time. They spent most of the time playing at the playground and just having fun. So fun to watch. Emily had a great birthday. On our last day there we decided to take them to Dollywood since they love to ride rides. Here they are on the "demon drop" with Emily's sister Morgan and their grandma--what a hoot...

They all had such a great time. I thought Makenzie was getting sick the day we got home, but after a week she seems to have pulled it together and has thus far avoided a trip to Pittsburgh. So now we are slowly trying to get ready for the upcoming holidays. Makenzie is very impatiently waiting for her birthday party. She has it all planned out. It will be Barney this year as that is all we are allowed to watch or listen to it seems. Should be fun. Finally this past weekend we went to my parents for a visit. My moms cousin brought Makenzie this "dress up adventure Dora" doll. I had never gotten it for her because it didnt do anything and I wasnt sure she would play with it much. Not sure what I was thinking as she is now obsessed with it. She has about wore the skin off of it already changing its clothes. She takes her everywhere and talks to her all day. So funny. Well that is about it from here. Ill post more soon. Thanks for always checking in on us. Hoping to just keep things quiet around here.

Wednesday, September 28, 2005 10:12 PM CDT

Hi everyone. Sorry I havent updated in while. There hasnt been much to report (which is always a good thing). We have just been enjoying some relatively quiet days for the most part. We are supposed to be going camping with one of Makenzies transplant buddies (Emily) tomorrow and for the weekend for Emilys birthday. Makenzie is very much looking forward to going fishing. Ill post pictures when we get back next week. Thanks for checking in on us.

Wednesday, September 28, 2005 10:12 PM CDT

Hi everyone. Sorry I havent updated in while. There hasnt been much to report (which is always a good thing). We have just been enjoying some relatively quiet days for the most part. We are supposed to be going camping with one of Makenzies transplant buddies (Emily) tomorrow and for the weekend for Emilys birthday. Makenzie is very much looking forward to going fishing. Ill post pictures when we get back next week. Thanks for checking in on us.

Tuesday, September 6, 2005 5:37 PM CDT

**UPDATE**
After a few little bumps and a broken down vehicle, we are back home in one piece. Makenzie's CT and scopes all looked good and she is over whatever little bug she got while we were away. Hoping to just stay quiet around home now for a bit---thanks for all of the continued support.



A friend has been trying to teach me how to update this page with pictures--so we will see if it works. Ill put new ones on the picture page as well. Just wanted to write and tell everyone about our wonderful vacation last week. We went to Ocean City, MD with an organization called Believe in Tomorrow---they have a beach house for critically ill kids and their families, so we thought we would try it out. It was a wonderful experience all the way around. The condo was beautiful. It was the first time Makenzie has ever seen the beach. She loved the sand....


She wasnt too thrilled with the ocean at first, because "it knocked Nana down", but she got over that after a couple of days and loved going in the ocean. My mom, my friend, Michele, and I took her down there a little each day. The heat would get to her some, but she was a trooper. The Believe in Tomorrow people had a cookout on the second day, which is where Lollipop the clown came in. The front page picture is of her and Makenzie. She was a huge hit with Makenzie. Everytime we went up and down the stairs to our condo she would point to the deck and say, "That is where the clown was.."--she must have said it 100 times. Very cute. Strangely enough one of the volunteers at the cookout was the dad and step mom of one of the surgeons I used to work with at my hospital and then a nurse that was there with another child was also originally from Roanoke and her brother lives on the same road I do way out in the country---very small world. One the next day we took Makenzie out on a Pirate Cruise. They dressed her up like a pirate..

It was so much fun. They took all of us out in the bay, had things set up for them way out in the water, found a buried treasure they had to pull on board that was full of toys. In this picture you can see Makenzie and the other kids "praying" for the return of the treasure map...(Makenzie is the one kneeling up close, very serious about the whole thing)....

It was too cute. On the next day we went to a little place called Frontier Land. It was a little place where they staged bank robberies and shoot outs in the town. Makenzie liked it because she got to go on a pony ride. The rest of us liked the indian dancers---an indian family was there showing traditional dances and they would paint the kids faces--is this one a cutie--i had to get a pic of him so I made Makenzie stand with him--lol...

On Friday we went to an amusement park called Jolly Rogers. She had a blast there. She wasnt afraid of any ride and would run from ride to ride saying "See if Im tall enough for this one!!!" She also became quite the minature golf expert. We would have to go every day. When she was having trouble she would just pick the ball up and carry it about an inch off the ground to the hole and tap it in. It made for many laughs. We would also go the Boardwalk there of the evenings. They have a great boardwalk. Makenzie mostly just liked to ride the rides there. One of the neatest parts for me was going to Assateague Island. We went there many evenings. It is a barrier island that is full of wild horses that roam the beaches and in the water. The last night we were there, there were tons of dolphins jumping and the horses on the beach watching. So cool. In one of these pics you can see a new colt that wasnt more than a day old....

In this one you can see Makenzie and the horses both watching the dolphins in the water...

It was just amazing to watch the horses just doing there own thing with people doing there own thing at the same time and neither bothering each other...

We were all sad to leave the beach but had a wonderful time. We were looking forward to coming back to Pitt and seeing American Idol Saturday night. Anyone that knows me, knows what a huge fan I am. A friend of mine was coming from Columbus (Logans mom, Kara) to see it with us but she was sick--so I just took Makenzie with us. We saw the first singer and the second and as Constantine came out Makenzie proceeded to throw up all over me. Thank goodness she pointed towards me--but needless to say we had to leave. The whole way taking her out she is screaming "I want to see American Idols!!!!" but there was no staying after that mess. Guessing she just ate something that didnt agree with her or she picked up a small bug at the amusement park. She wasn't feeling great on sunday but started perking up Monday. She had her scope today and it looked okay--then had a CT--if all goes well we are going to go to clinic Thursday and hopefully home Thursday night or friday. Ill let you know how that goes. Thanks to everyone that contributed to the fun we all had this last week. We made memories to last a lifetime.

Sunday, August 21, 2005 9:22 AM CDT

We made it to TN and back with no incidents of any kind. It is a good start. This first picture is of Makenzie playing in the river in the Smokies--she thought that water was so cool. We had a great time visiting with Traci, Mike and Marta and Misty, Emily and Morgan. The kids all had so much fun. They just played and played. Ill add a few other pictures to the photo page. It was nice being able to visit with our friends and not be in the hospital or at the hotel. We hope to be able to do this on a regular basis. Things are going to be hectic here for the next week I am sure. Today will be spent unpacking and getting everything clean so that we can turn around and pack it all again. We are leaving for the beach on Friday for a week and then she has a week in Pittsburgh with scopes and clinic and CT scans the following week--so we are just heading there straight from the beach. So hard to pack--it is like moving the entire house to get enough supplies for 2 weeks together. You would think we would be pros by now--but putting two trips together is still tricky. That is about it from here. Hoping she will just stay well through the next couple of weeks---ill post more as things happen and when I get pictures of her at the ocean for the first time. Sign the guestbook if you have time--we love to see who all is stopping by.

Sunday, August 14, 2005 8:29 AM CDT

Things continue to remain quiet around here---just like we like it. Makenzie has been feeling really good. If her labs are okay Monday we are hoping to be able to stop her IV fluids. Now, if we could just get her EBV numbers back down she wouldnt have to be accessed all of the time--either way we have missed swimming almost all summer---but I wont complain. We are leaving first thing Tuesday morning for Tennessee to see some friends---will be great to get together with them again. Ill be off line a few days while we are gone but will add new pictures when we get back. We ask that all of our little friends behave while we are gone. Prayers to those struggling. Will be back soon. Thanks as always to all that continue to walk this path with us--we wouldnt make it without you.

Saturday, August 6, 2005 9:54 PM CDT

Things around here have been quiet for a week or so. Makenzie has been doing good. A few off days, but overall okay. We have a couple of trips coming up, so Im just waiting for her to do something silly. We are supposed to go to Tennessee in two weeks to see our friends Misty and Emily (who is Maks age and also had a transplant) and then Ians family will be there too---fun for all even if it is only for a couple of days. Then the following week we are supposed to be taking Makenzie for her first trip to the beach. She has been all over the country but has yet to see the ocean. Her Aunt Michele is flying in from Montana to go with us--we are excited to see her again as it has been almost a year. We will be working in a trip to Pittsburgh right after the beach trip if she will wait that long. So hoping she will, but with her you never know. We are about to finally get the house in order. The inside is pretty much finished--the yard is the worst part---I was looking Paul Bunyonish in the yard all day with an axe chopping tree stumps and Makenzie was happily riding her Barbie jeep all day. It wasnt as hot today as it has been so we were able to stay out a while. Makenzie has a new friend, Victoria, that lives next door. Makenzie has been fascinated that Victoria has lost her front teeth. She told her Nana the other day that when she was 5 her baby teeth were going to fall out. Nana asked her if when they did she was going to put them under her pillow for the tooth fairy---she said "Noooooo---Im going to put them in a cup like Papaw does!" Too funny. That is about it from here---ill write more as things happen here. Thanks for always keeping up with us.

Friday, July 29, 2005 10:40 PM CDT

HOME!!!! One more time.....another 2 week stint in Pittsburgh is over. Sad enough, once again, Makenzie had a great time. Actually, after she got out of the hospital is was actually pretty nice. We were able to spend some time with many friends that we hadnt seen in a while. On the other hand though, I am very glad to be home. Makenzie is feeling much better--after this last episode though I have decided to keep her out of preschool for now. She is very disappointed, but the risks right now just arent worth it. She will still have another year to go to preschool if it seems like she is medically ready. I will have to find something in a small group setting for her to do to fill the void I guess. Hopefully next year it will be easier to find a place for her as well. That is about it from here right now. Very glad to be home in our own beds. Hoping not to have to head back north until the last week of August. So hoping she can stay well until then as we have plans for several little short trips between now and then. Ill let you all know how it goes. Thanks for the continued support as always.

Friday, July 22, 2005 11:06 AM CDT

Makenzie got back out of the hospital today. They have pretty much decided she just had a bug that she probably picked up when I took her to Chucky Cheese last week. The doctor asked "so, you really took her to the infection pit did you?" So needless to say I doubt we will be going back there for a while. We have to let her be as normal as possible---but I guess not in overly populated places. She also has to go back on the IV medicine for ebv so that means minimal swimming now as her port a cath will have to stay accessed. Stinks. We are hoping to get back to VA next week sometime--ill let you know.

Tuesday, July 19, 2005 0:53 AM CDT

As if we werent having enough fun....Makenzie apparently wanted to stay in Pitt a bit longer. So her biopsy from last week was fine. Last night she started with high output again but also complaining of not feeling great. Starting with vomiting and a low grade temp today so we loaded up and drove yet another 7 hours and are now back in Pitt waiting for a scope in the AM---ill let everyone know how it goes as soon as I know something. Some prayers that is nothing and we can quickly get back home are in order--thanks so much.

Friday, July 15, 2005 9:18 AM CDT

Another quick trip to Pittsburgh completed. They wanted Makenzie to come for a scope--called on Tuesday, we left wed and came back thursday. Hoping her biopsies are okay since we didnt wait for the results. Her EBV numebrs are climbing again so they are giving her 2 weeks and if they continue to rise she will have to go back on the IV meds for it which means only swimming one day a week which she wont like. Ill just have to find other ways to keep her busy. I am hoping that I have found her a preschool to go to. We are going to meet with the teachers next week and see if she might fit in there. She is very excited already. So funny. Acts like she wants to get out of the house or something. While we were gone a man came by and took out our trees---much better--now just the mess to clean up. Hoping to finally get some satellite here now. Will post again after I get her biopsy results---thanks for continuing to follow us through all of this.

Wednesday, July 6, 2005 10:17 PM CDT

Hi everyone. Makenzie has had a very good week. Her uncle has been here visiting from FL and they have had a big time together. Makenzie thinks it is Christmas again. They dont get to see each other much--so it has been great to see them spending time together. We will be taking him back to Greensboro in the morning---Im sure she will throw a fit over that. We went to a friends house for 4th of July fireworks--she was so excited--she kept yelling Holy Cow!!! Everytime one went off---was driving me crazy so I told her to please say something else---so the next one went off and she said SH##!!!! Not one of my prouder moments --haha--Holy Cow was much better after that. Things are slowly coming together here at the house. But--CALLING ALL HELPERS!!! Anyone that knows anyone that can use a chainsaw please give us a call. We have several trees that have to come down before Make A Wish can come out to build her wish for her---and I have no idea at this point how to get it done---so if you know anyone that I can hire somewhat inexpensively, someone just let me know. Not sure where else to go from here but Ill keep looking. Never knew it was so expensive to get trees cut. We have been without any tv or satellite service since moving also because of these trees and we are getting desperate--haha. That is about it from here. Long day ahead tomorrow so Ill sign out for now--thanks for continuing to check on us!!!

Friday, July 1, 2005 1:15 AM CDT

Things are pretty much status quo around here. We are finally getting settled in the house. Makenzie has made a couple of neighborhood friends--which has been a bit of a challenge as these are the first kids she has made friends with that didnt know about tubes and wires etc--they all seem to be adjusting just fine to it--just alot of questions. Make a Wish came to interview her this evening and she was a hoodlum the whole time they were here--jumping on the furniture and broke my lamp. I had to go pick up my brother at the airport in Greensboro tonight and my mom was watching her--said she fell and cracked her head on her feeding pump jumping on the bed---said she straightened up after that and was calm---guess I need to start each day by cracking her in the head. That is about it from here. Hope our friends at Oley this week are having a great time---so wished we would have been able to see you all---next year Ill be there. Ill post again soon--thanks for always keeping up with us......

Wednesday, June 22, 2005 10:04 PM CDT

Well we made it back from Pittsburgh this morning. It was good to see alot of old friends--but so very sad for Louie and his Mom, Dad and brother. His service was beautiful --- we will sure miss you Louie. As for Makenzie--she had a clinic visit and scope while we were there. Havent heard anything about her scope yet---her labs landed us inpatient in the hospital yesterday getting some IV magnesium. Makenzie thought that was just great. She got to hang out with Hannah and Isabelle and Olivia and she was crying when I made her leave. We started out late and then about an hour into the trip home I realized I had left my house keys in WV so I had to turn around and then we got lost a while--ended up in WV at a little after midnight--so we just slept there. Makenzie was especially glad to see Nana and Papaw. We came back to the house today and so it is back to work at trying to find a home for everything. I cant stand for things to be disorganized--so this is driving me nuts---hopefully Ill finish this weekend. Ive added some new pics of Makenzie that I just had taken---hope you enjoy them. She is growing up so fast. Thanks for all of the continued support.

Tuesday, June 14, 2005 10:14 PM CDT

Hi all--just wanted to let everyone know we have finally moved. It has been a long process but things are starting to find homes around here. Still a long way to go---but I think we are going to like it here. One of these days we will get settled. We are heading out in the morning for Pitt. One of Makenzie's little transplant buddies passed away very unexpectedly Sunday and so we are heading up to see his family. We sure are going to miss you Big Lou ( www.caringbridge.org/pa/louis ). Your laugh will always ring in our ears and your smile would melt any heart. That is about it from here. Ill post more after we get back. If any of you need our new address or phone number just email me and ill send it to you. Thanks for always checking in on us.

Wednesday, June 1, 2005 7:49 PM CDT

Ill quietly say that things here continue to go well. We are still trying to get packed and moved--but having fun getting stuff done---going back and forth. Makenzie is excited about having a playroom and says she is going to sleep in her own room by herself--but I dont see that happening for long. We stopped her IV fluids today---YEAH!!!! It has been 8 months since she got sick --- quite a long recovery period, but I wont complain. She is feeling really good and if her EBV levels stay down she will be able to swim whenever she wants this summer. That is about it for now. Ill post more soon and try and get some new pics up here. Thanks for keeping up with us.

Thursday, May 26, 2005 10:30 PM CDT

Makenzie and I ended up making a quick trip to Pittsburgh this week. We were scheduled to go in 2 weeks anyway, but this ended up being better for all of us with the move coming up very shortly. Makenzie's scope looked great. We made many changes in her meds--most importantly, if her labs are okay on Monday we are going to stop her IV fluids which will be so nice for her--she would be able to swim whenever she wanted this summer. That is about it from here. We have really got to finish getting packed now--a ton to do, but glad this trip to Pittsburgh is over this time. We have to go back in 6 weeks. That will be fine as long as she stays okay until then--crossing my fingers. She missed her riding lesson this week but we are hoping to get back on track next week. Ill post more as things happen. Thank all of you for contuning to support Makenzie and I.

Thursday, May 19, 2005 7:37 PM CDT

Here are the new pictures I promised of Makenzie's first horse-back riding lesson. She loves it there. Things continue to go well around here for now. Makenzie is almost back off of IV fluids and we are hoping that happens before summer. We are very busy just trying to get things in order to move---we go to Pitt in 2 weeks and then move right after--but there are a thousand things to be done between now and then. Instead of working hard we have been enjoying these first days of spring. It will get done in time I am sure. Ill post more as things happen here. THanks for all of the continued support.

Saturday, May 14, 2005 11:01 PM CDT

Hi again. Makenzie has been doing very well for a little over a week now. I try not to even dwell on it because when i do she usually ends up getting sick---but she looks really good right now. Best she has looked since she got sick last September. We have been able to cut her fluids way back---but she is back on daily meds for EBV again, so even if we can get her off of fluids she wont be able to swim much. Maybe this will get better too. We are getting new levels Monday so we should know by the end of the week how high they are--I am guessing high since he FK levels are still pretty high. If the EBV level is high we will have to start dropping her meds again--this is how she got in trouble in the first place in Sept--so it is just going to be a fine line again. Other than that we have just been busy packing and getting ready for the move. Things are starting to fall into place slowly but surely. We are closing on the 31st if all goes according to plan--so it is going to be a crazy few weeks. Have to head to Pitt June 6th for a week too---but it will all work out like it is supposed to I am sure. Makenzie went on her first horseback riding lesson last week. I have some pictures that I will post soon. She had a ball. It was kind of a little scary seeing her up on that big horse with no one holding the horse--but she learned to trot around the ring and even make the horse turn in a circle--she thought she was such hot stuff. Looking forward to taking her back there again. Will post more after Mondays labs come back--keep her in your prayers that she continues to improve.

Monday, May 9, 2005 9:29 PM CDT

Things have pretty much been status quo around here. Makenzie has good days and bad--but has been holding her own for a while. She continues to be on daily IV fluids with no signs of being able to get rid of those for a while. But for the most part she feels good--so that will just have to be good enough for now. We have been busy packing everything in the house and getting ready to move. We are supposed to be moving the 2nd week of June--but we have alot to get done between now and then including another week in Pittsburgh thrown in somewhere in the next few weeks. That is about it from here. Thanks for everyones continued support.

Sunday, May 1, 2005 8:54 AM CDT

Just wanted to thank everyone for the well wishes for Makenzie's 2 year anniversary. We had a great time celebrating with family and Laurie and crew (which are family as well). Nana said something like "Makenzie, did you know this is a special day?" and she said "I know Nana, its when I got my new belly!" Even at just three years old she has a small understanding of what has been done for her. It has been a good few weeks. She is slowly but surely getting better. So hoping to have her off of IV fluids by the middle of summer so she can swim. Oh, and other good news is that we became homeowners yesterday. Very excited about that. Found a little place out near where the last one I looked at was---but yes, at this one I will still have turkeys and goats for neighbors again---happy about that. We will close in 4 weeks--so it is going to be a hectic month for sure. But something that we have been looking forward to for a while. Ill let you know how all of that progresses. Thanks for always checking in on Makenzie. Crossing our fingers that this good period continues.....

Thursday, April 28, 2005 9:17 PM CDT

Hello again--about 4 hours from now marks the two year point of when we received the phone call that changed all of our lives. They called and said that there were organs available for Makenzie. Makenzie, her Aunt Laurie and I headed out on a jet at around 4 am and got to Pitt at about 630 am. She ended up not going to surgery until around 4 that afternoon--but by midnight she was out and ready to start her new life. She has had more than her share of ups and downs, but her life has certainly improved since then. She is a smiling, happy, smart little three year old girl---more than we could have ever hoped for her after she was born so sick. All of this was made possible by a family that made a decision to look beyond their own grief and give Makenzie another chance at life. We will forever be indebted to them. So tomorrow, while we will be a having a celebration of life for Makenzie, we will also be remembering her donor family and what a sad day this is for them. If they could only see what a miracle they have helped to create. Very fitting that Makenzie's transplant happens in Organ Donor Awareness Month. If you haven't signed a donor card today would be a wonderful day to consider doing that. Without people making that decision Makenzie wouldnt be here. Her little friend Isabelle is going to light a candle for Makenzie's donor family at a service in Pittsburgh tomorrow night since we cant be there. Thanks for doing that Isabelle. That is all I have for now--just thankful for another day....

Monday, April 25, 2005 5:55 PM CDT

Hi everybody. Not too much happening here. Makenzie spent the day at the hospital today getting an IVIG infusion but it was a quiet day. Her labs looked okay. I did get a call a little while ago that her EBV numbers are started to creep back up, so we will have to start watching that again now. They are having a meeting Wed on her to decide what, if any, new meds need to be tried for the allergen problem and whether or not to start treating the EBV again. We have to start decreasing her immune spression meds again now too because of it--so we have to watch her closely again. Other than that not much going on. We are supposed to meet with the realtor tomorrow to look for a different house. We just got word a couple of days ago that we for sure didnt get the other house. Hopefully something will make itself apparent tomorrow. Ill keep everyone posted. Hoping to get Makenzie into horseback riding lessons next week--she is so excited--hoping that works out for her. Will let everyone know as things happen here.

Thursday, April 21, 2005 10:31 PM CDT

Sorry I havent updated in a few days. We have been busy in Pittsburgh. Mostly this trip has been a pleasant one and we have gotten to spend time with many different friends which has been so nice. Makenzies scope looked good on Tuesday---still shows the allergens but no change in meds for that as of yet. Tuesday night she started getting sick and I was sure she was going to end up back in Georges House--but 24 hours later she perked right back up. Guessing it was just a 24 hour bug she picked up while at the hospital for scope. Clinic today went fine. The plan right now is to just come back in 2 months if she stays okay. We are supposed to leave out of here tomorrow morning for VA--she will have to get admitted in Roanoke on Monday for a dose of a medicine---but it will be nice to see some of the people that have taken care of her that havent seen her in so long. That is about it for now. Ill post more when things happens--for now just hoping for a nice quiet trip home in the morning. Thanks for always checking in on us.

Tuesday, April 12, 2005 6:08 PM CDT

Well we are guessing it is back to house hunting. We havent heard anything for sure as yet--but know 6 bids were placed on the house--so I wont get my hopes up. We will find something else soon though I hope. We are back off to Pitt this coming Monday--if all goes well it should only be for 4 days. Lets keep our fingers crossed that is all and that we can get back here and find a house before too long. Not much else to report from here. If anything happens before we leave for Pitt on Monday Ill let all of you know. Thanks as always for the continued support.

Monday, April 4, 2005 10:01 PM CDT

We heard from Pitt today about Makenzie's biopsies. It shows a large amount of allergens in her bowel. For those of you that have followed Mak all along, this was the same problem she had back in June before the rejection even happened. So they have increased her prednisone again and want her brought to Pitt next week for another scope. Not sure what day we will be going as yet. The other bit of news is that we may have found a house. It is not for sure as yet. It would be the perfect little house for us will all of the room we would need. It is a foreclosure house though--so it needs quite a bit of stuff done to it. Mostly cosmetic, but a few bigger things too. I am sort of waiting on a sign that this would be the right thing to do. The school system there would be perfect for Makenzie. It is small and out in the country---even though the house is in a neighborhood. For those of you that know me, you know that would be weird. I have never lived anywhere that had neighbors by other than cows and goats. But I really like this place. So for all of you handymen/women out there reading this--please come and help us if we get this place. It always worries me that she might get sick again and we have to leave. But if we live that forever then Makenzie will never have a home to call her own. So just be prepared for cries of help. I should know something sometime next week. May the right thing happen. That is about it from here. Ill post more when i know more--thanks for everyone's continued support.

Friday, April 1, 2005 9:41 PM CST

Amazingly enough we are still in VA. Makenzie hasnt been quite right since we got here, but we are doing our best to stay here as long as we can. I have gotten one ton of stuff done in the last 10 days so it feels like we have been home longer than we have. She was scoped Wed but we will have to wait until Monday to have Pitt look at her biopsy and maybe that will give us a clue into what is going on. Until then we will just enjoy being here. Thanks for always checking on her and Ill update when anything else happens.

Friday, March 25, 2005 10:51 PM CST

Hi all--just wanted to let you all know Makenzie and I made it back to VA just fine. Maks Nana and Papaw both had the stomach flu--so we havent gotten to see them yet---but soon I am sure. It has pretty much just been the two of here since Tuesday night--it has worked out okay though because I have been cleaning since we got here. Figured I may as well spring clean as I go since I couldnt find a place to put all of this stuff in anyway. It is like moving two more people into an already full house. So I have made three trips to the dump today with just tons of stuff I havent used in years. On the Makenzie front, she has been feeling fine--but her output has been up since the day we left. When we did labs yesterday her FK level was 5--I about had a stroke--that is waaayyy too low for her immune supression---so we are just watching her right now and will redo labs in the morning and go from there. I am guessing she will need scoped at some point unless things slow back down---so lets all pray for slow poop--that should be enough to get someones attention. Well we are off to bed--ill post more soon. Hope you all have a great Easter.

Monday, March 21, 2005 11:17 PM CST

Hi again---thought Id post once more to just share a funny Makenzie story. Im not sure all of you can see the humor in it--but it really was funny. We were running around in the hotel last night and this lady gets on the elevator with us and Makenzie is just laughing and acting like a nut. This lady says to Makenzie--you are just the cutest thing--where are you going? No which Makenzie laughingly replied "Im going to go get a needle stuck in my chest!" The lady looked at me mortified and I said---yep, that is where she is going all right. Im not sure if that lady has gotten over that answer yet or not---haha. Needless to say Makenzie was reaccessed without incident and had the needle put in her chest just like she said. As for other news--clinic went fine--we were on the floor after that until 6 this evening getting IVIG and then went for a farewell dinner with Tyler, his mom and his Mimi. We are sure going to miss them--but im all packed and ready now--should be back to VA before 5pm tomorrow---keep us all in your prayers that we make it back safe and sound. Ill post more after we get there.

Sunday, March 20, 2005 9:51 PM CST

Well I wasnt going to post anything else until we got home, but I just had to share what a wonderful day Makenzie had today. It started this morning when one of the guys from the front desk here called and asked for Makenzie to come down---he and a friend (Matt and Buddy) had gotten her an easter present. She just loves both of those guys--and many of the other wonderful people that work here at Residence Inn that have made our stay so incredible. Thank you all so much for everything you do for us and for just caring about Makenzie. The rest of the day was spent with Isabelle's family. They invited us over for an early Easter brunch at Izzie's Grandmas house. She had a ball playing with Izzie and Maddie and their cousins. It was so sweet of them to have us over and treat us so much like family. They had gotten Makenzie her own Easter Basket and then they all had an easter egg hunt and colored easter eggs. Makenzie thought it was the best day. She truly is going to be bored when we get home. Her output today has been the best it has been since we arrived 6 months ago. She even ate a bunch of chocolate and it is still ok---so I will keep my fingers crossed. We packed the car tonight since we are going to be gone all day tomorrow, and you cant see out of a single window. But other than a few toys that I am leaving with Tyler's mom, I think it is all going to go. It is going to be a long trip with all of that junk though for sure. Makenzie has clinic and labs in the morning then has to get admitted for the rest of the afternoon for IVIG. We are hoping to get out in time to have dinner with Tyler and his mom before we leave on Tuesday. Ill post either when we get home, or when Makenzie decides to get sick since everything is packed away.

Friday, March 18, 2005 4:39 PM CST

Thought Id show you all some of Makenzie's newest Easter pics--she did a good job getting them done. Child Life at the hospital got us Nemo on Ice tickets for tonight--so that is where we are heading to now. She is very excited. We were supposed to go in and get her IVIG today but it was taking forever, so we opted to leave and come back and get it Monday so she wouldn't miss the show. If all is well we are going to go to clinic Monday morning, then go get her IVIG Monday afternoon and plan on leaving here for VA Tuesday morning. We are so looking forward to seeing everyone there---just if any of you are sick or have kids that are sick (or even have kids that been AROUND someone sick), plan on waiting a bit. Makenzie has a pitiful immune system right now and is catching everything coming and going. But so hoping most everyone is healthy so we can see you when we get home. Ill post more if anything changes between now and then, otherwise Ill talk to you when we get home---keep your fingers crossed....

Monday, March 14, 2005 9:59 PM CST

Makenzie is back at the hotel--actually they only kept her about 24 hours. They got her labs straight, scoped her (which looked ok), and increased her IV fluids. Then they sent us on our merry way before she caught something else. They never did identify what bug she has gotten, but hopefully it will pass soon. At clinic today she had lost a little weight so we are going to give her some lipids in her IV fluids at night to beef her up some. I know she looks big because of her cheeks, but she weighs less than she did a year ago. So we will try that for now. I talked to the docs today also about whether or not we should consider relisting her for another transplant at some point and the answer was pretty much what I expected---lets give her some time first. Which is fine by me anyway---i am just saying that if a year goes by and she is no better then we need to look at it---it has been 6 months next week. They will scope her again next Tuesday and if that is okay then we are heading back to VA next Friday---here is hoping Makenzie cant read and sees this as she will make other plans I am sure. She is getting very excited about the Easter Bunny coming to visit. She is going to go get her Easter pics made on Thursday so Ill try and post them then. Until next time....

Friday, March 11, 2005 2:30 PM CST

And here we are yet again. Makenzie was admitted this morning with what we are guessing is one of these bugs everyone else has been getting. Throwing up and high high output. She was scoped a few mintues ago and it looks okay---so we are hoping it is just a bug that will runs its course. But I couldnt keep her hydrated at home--so we are back in. Thanks Alice for writing in her guest book that you will miss us---I guess she read that and decided to come back to see you. Ill let you all know when I know more--until then we are just hanging out here. Thanks for keeping her in your prayers. I am guessing this will delay our coming back to VA a while---but hopefully we will make a visit soon anyway.

Saturday, March 5, 2005 9:42 PM CST

Ive added Makenzie's picture from last week with the Easter Bunny. She tried very hard not to be scared. By the time it was over they were big buddies. And now quietly while Makenzie is asleep I will type that the intended plan is for us to go back to VA Saturday after next. Since she cant read yet maybe I am safe. I know if she hears anything about it she will find a way to keep us here. Thought she had already done that this morning when her port a cath clotted off. So instead of spending a lazy Saturday in our pajamas, we got to spend 8 hours in the ER trying to get it fixed. It is working again and about that we are very happy. She has alot to do in the next two weeks---a CT on Tuesday, labs Monday and Thursday and clinic Monday as well. The next week scope, clinic, and IVIG infusions if she needs it again and then Friday we are going to see Nemo on Ice--hoping to head home the next day. That is all from here. We are wore out from our day at the hospital and going to bed. Ill add more pictures in the coming days. Looking forward to seeing all of my VA buddies again---it has been too long.

Monday, February 28, 2005 9:48 PM CST

And she's out. It was a line infection---she felt horrible a couple of days but has been okay since then. I wont complain much because we took her off of almost all of her steroids while we were in and so far so good. They scoped her today before we left--so Ill know tomorrow evening or more like Thursday about that. Her output though is as good as it has been in a while. There are a ton of bugs going around the floor--so we were glad to get out when we did. Clinic on Thursday and Im going to mention going home to VA and see what happens. Not much else happening here. Our buddy Emily got the go ahead to head to TN--so they are leaving at the end of the week---awesome. Ian, Hannah, Justin and Dess all still in needing prayers and now our little buddy Tyler took our place and got admitted thie evening with fever---so say a prayer for them too. Ill let you know when i know more about coming home. Oh--and thought Id share the scene Makenzie made today leaving as I had to drag her screaming --- I DONT WANT TO GO HOME--- I WANT TO STAY HERE!!! People must think she has a horrible home life--haha.

Wednesday, February 23, 2005 7:25 PM CST

She's in, she's out, she's in, she's out--unfortunately this one ends with she's in--once again. Started with a fever this morning. We were leaving to go shopping for the day with Kara and Grant and Logan when she decided she didnt want to go apparently. So our visit with them was cut very short--so thankful we got out to dinner last night. For those of you that know Logan--you know Makenzie stood about half a head taller than him last time they saw each other. He is huge. Several inches taller and much thicker than Makenzie has even thought about. So cool to see---he looks awesome and it was so good to spend some time with him Mama (and his Dad too--sorry we didnt get to torture him in Grove City today though). Hope we can visit again soon. On the Makenzie front--I am guessing it is a line infection. She started acting like this this morning after i flushed her line---by the time we got to hospital she was feeling alot better and didnt even have a fever--but as soon as we used the line again she started all over--so that is my best guess. We will have to wait for cultures tomorrow and see what they show. I was supposed to be in VA on Sat---needless to say that isnt happening either. Ill let all of you know when I know more. Pray for a short simple stay here back at George's House.

Saturday, February 19, 2005 7:34 PM CST

Well she is out again. She turned out positive for influenza A--so she has been pretty lucky. Was really only sick for about 24 hours and since then has felt okay. I talked them into letting us go today since we were just sitting there anyway. As we left Makenzie looked at me serious as she can be and said "Thanks for letting me come to hospital"---whatever makes you happy I guess--she loves that place. So now we are back at the hotel and getting things straight yet again. They dropped her steroids yet again---so one step closer anyway. She will get scoped again Thursday. Hoping to get her off of the IV steroids in a week or two and get back to VA for a while. Missing all of our buddies there. Special prayers our for our buddy Ian---had his first little bump with a bit of rejection---hoping he is out next week. Happy Birthday to our buddy Louie--sorry you spent it inpatient--but hoping you get to have your party tomorrow. Prayers out for Miss Emily too who flew through her ostomy reversal surgery like it was nothing---hope to have you back to the hotel Monday and home to TN in a week or two. Thoughts and prayers also for Destiny and Justin who also remain in with various issues. Til next time.......

Thursday, February 17, 2005 1:55 PM CST

Well Makenzie apparently missed all of her little friends so much that she decided to join them in Georges House. I should have known something was up yesterday when i had to drag her out of the Cheesecake Factory kicking and screaming for misbehaving that something was up. She started with a dry hacky cough that turned into a wet cough with runny nose and a fever which has now put her inpatient. She is here with Emily, Tyler, Destiny, Louie, and Justin though--so she is right at home. She cant be out in the halls though til we figure out if it is the flu or not--so she is bummed about that. Actually she has slept all day---so you know something isnt right. So anyway, waiting on cultures and whatnot and hoping this is a short stay. Our buddy Logan is supposed to be here Sunday--so we are hoping this thing has run its course by then.

Monday, February 14, 2005 9:01 PM CST

As you can see from the pictures, we were able to get to Niagara Falls. We actually went on over on the Canada side so that Makenzie can say she went. It was coooooold and wet so we were only outside a few mintues to see them. But more importantly we got to spend the afternoon with some of our TPNsupport family. Beatrix and Mark brought Patrick down and then Sue brought Emily and Jen and then there was Traci with Marta and me with Makenzie. We went to the Hard Rock Cafe for lunch and it was great just spending time with people who live the same lives we do and understand completely. It was a wonderful visit. Traci also then took Makenzie to Build a Bear for Valentines Day and bought her Gracie the bear which she has rarely put down since then. Thank you to all of you guys for coming to see us and to Traci and family for having us. Cant wait to see all of you again.

Saturday, February 12, 2005 11:36 AM CST

Hi all--well we have been having some pretty good days. Actually yesterday we drove to Buffalo NY to see some transplant friends of ours (Ian's family). Makenzie has had a ball. I didn't see much of her last night as she tagged along with Ian's little sister Marta and her friend. I went to check on them at one point and one was reading her a book and one was playing her a video--she told me to leave--haha. She definetly likes having someone to play with other than me. We have to be back in Pittsburgh tomorrow--but we are hoping to see some other TPN friends while we are here today (Sue and Emily) and also go to Niagara Falls tomorrow and meet Beatrix and Patrick from Canada that we havent seen in a few years. Just thankful she has felt well enough to do these things. They are continuing to wean her steroids and we are hoping to be back to VA within a month if all goes well. Thank you all for the continued support. Please keep our buddy Destiny in your prayers---she has been having some better days--as well as Justin who is having some new problems arise--he has been in Pittsburgh way too long. We are back to Pitt tomorrow--labs and scope Tuesday so Ill update after that. Thanks Traci, Mike, Ian and Marta (and Bret) for making us feel so welcome and showing us such a good time.

Thursday, February 3, 2005 8:44 PM CST

Makenzie and I are back at the hotel--she actually only ended up needing to stay one day last that last time we were in. The kidney doctors saw her and said they were amazed her kidneys were still in pretty good shape. They put her on another blood pressure medicine until we can get her steroids down and immune supression lower. So far so good. Her labs today were okay too and she also had a scope which looked okay but wont know what the biopsy shows until tomorrow. Crossing our fingers. Dr "Nice George" also talked about going home for a while. We decided we would wait until she was off of her IV steroids before we went--so Im sure that will be a few weeks--but man, that would be awesome. I certainly wont make any plans---but will certainly keep it in the back of my mind. That is about it from here. Ill keep everyone updated as things happen.

Monday, January 31, 2005 8:06 PM CST

Well we avoided being in the hospital for a few days. Makenzie's labs werent too bad on Saturday so we were able to stay at the hotel. Today they called though and some of her labs were off again, so she is going to be admitted tomorrow afternoon for a few days to try and get things straight. She needs some albumin and phosphorus which is is losing because her output is too high. She will also need more potassium I am sure. While we are there they are also going to get the renal doctors to see her again to try and get her on a better blood pressure medicine. She feels fine though and so I am sure she will have fun---she loves that place. Im not sure how long we will be there but Ill update when I know more. Thanks for continuing to keep up with her journey. Hoping this huge bump in the road starts to level out again soon. Oh, and I've put a few new pics on here as well---hope you enjoy them.

Friday, January 28, 2005 10:02 PM CST

The busy week continues. After being discharged on Wed, Makenzie and I got up and went to the hospital for labs Thursday morning. Things were still pretty low but we just gave her more potassium and I loaded her in the car because I had to make a quick (7 hour) trip tp VA for my job---we got home at 7pm last night---did a quick Walmart trip, visited with Laurie, then came home and got Mak hooked up and went to bed. We got up early this morning and I had my meeting then we loaded back and by 11am were on our way back to Pitt. My guess is that she will be admitted again tomorrow for putting way too much out and getting her electrolytes out of whack. So tonight Ive done the laundry and gotten a bag together. Hopefully we will figure out soon enough what is causing all of this again. I am beat and heading to bed---so Ill update tomorrow after I find out if she has to go back in. Please add some prayers for Miss Dess our friend. She ended up getting her kidney transplant yesterday and is having a pretty rough time--thanks to all of you.

Tuesday, January 25, 2005 9:57 PM CST

Well Makenzie has been keeping me hopping all week. Ever since we got back she hasnt been quite right. Still with way too high of output with no real explanation. Her scope didnt show anything out of the way---so far all cultures are negative. All week though she has been getting her labs out of whack and she has been admitted every afternoon since Sunday for different meds of one kind or another. The docs here have been very helpful in that they understand I need to have her outpatient as much as possible because of my job---so that has at least meant we have been sleeping at the hotel---most nights anyway, but tonight they kept her in. I am supposed to leave here Thursday to drive to VA for my job requirements---but since she isnt exactly well I am going to drive the 7 hours on Thursday then turn around and come straight back on Friday---not a fun way to spend the next few days--but I wont complain. That is about it around here. It is going to be a long few days so I may not post until I get back and get settled again. Please say a special prayer that we can make this very quick, but long trip, with no incidents.

Tuesday, January 18, 2005 9:20 PM CST

Makenzie had her scope this morning---it looked a bit red but they called this evening and said the biopsy didnt look too bad. So she is back on IV steroids again for now and we will see them again Thursday. She is having high blood pressure because of the steroids so she is going to have to see the renal doctors this week to try and get her on some medicine to help that until we can get her off of them. Her output is still high but we are just going to watch her for now. Other than that she feels fine. She and Emily play most all day. I have added a picture of them leaving for their Sesame Street concert on her picture page---too cute. Thanks for all of the continued support. We have to try and head back to VA again next Thursday since I didnt get things done that I needed to for work--so maybe I can try and see some of you guys at home this time.

Monday, January 17, 2005 8:54 PM CST

Sorry I havent updated in a bit---once again a whirlwind week. First--Makenzie's clinic visit went okay. They said her scope still showed some activity but they felt it was something chronic that was just going to take a while to get better. So we tried stopping her steroids once again. Probably not a good idea it appears. Next Ill say that Makenzie and Emily and me and her mom, Misty and Maks Nana and Papaw all had fun at Sesame Street. Makenzie was still a little scared of them, but not as bad as last time. Ill post some of those pictures soon. So next, we were supposed to go to VA Sat so I could get some things done for work. We got there sat evening---Sun we spent running around with Laurie and the kids just having a normal fun day---however starting around 10pm Makenzie started putting way to much out---by 2 I knew we would be coming back here--so i just stayed up and did laundry and got the car packed. We left at 4am. They let me keep her out until at least tomorrow when she will get scoped again. She cant seem to keep it all together for now--that or she doesnt like VA anymore--havent decided. So now I have to make another trip back sometime in the next two weeks for work again. Yuck. So anyway--now we are beat and heading to bed. Ill post more when I find out what is up.

Wednesday, January 12, 2005 12:14 AM CST

Hi all--Makenzie remains out of the hospital for almost a week now--yeah!!! She had a scope yesterday so we should hear about that this evening. She is having some blood pressure issues that we think are related to her steroids but we will have to see how that goes. She may need to be on some medicine for that until the steroids can be taken down. She goes back for clinic tomorrow. Her Nana and Papaw are on their way for a visit so she is very excited about that. She is going to see Sesame Street Friday evening which should be fun. She has a new friend Emily here at the hotel who was transplanted in October and they are thick as theives. It is very fun to watch them play together all day. That is all I hear as soon as she wakes up--do you think Emily is awake yet? Can Emily come play? Half the time they dont even play together--they just both like to do their own thing but they have to be in the same room. Ill add a few pictures of them on her photo page--also put a pic of the Barbie Jeep and Barbie house Santa brought--hopefully she will get home soon and can play with them more. Ill post more after clinic tomorrow.

Saturday, January 8, 2005 9:09 PM CST

Well we are out again---but only because I am fortunate enough to be a nurse and that they trust me to take care of Makenzie. Her biopsy from Friday showed even more "activity" than the one on Tuesday---so they gave her a big steroid bolus again and then let me bring her back to the hotel on IV steroids twice a day. Mixed in with every 8 hour antibiotics still and all of her regular medicines it makes for a busy day. But I was happy to be here versus the hospital. Now, Makenzie on the other hand would just as soon be there. She loves to socialize there. Someone asked me yesterday if she was running for mayor as she was greeting everyone getting off the elevator--most by their first name. She is quite the character. Just hoping she can stay out a while--we will see. The plan is for labs and clinic monday, scope tuesday, labs and clinic thursday ---they say they may try to add another immune supressing drug to her regime--but they have to wait until everything is cleared up first. Hopefully she will improve today and tomorrow, but of course we never know. Always ready to just head back in when we need to. Thanks for continuing to keep Makenzie in your thoughts and prayers.

Thursday, January 6, 2005 7:22 PM CST

In and out and in again. Well that was short lived. Anywho---Makenzie's output started climbing during the night. We went to clinic this morning and I just passed our coordinator--she asked how things were and I told her --they didnt even see us in clinic--said she just needed to be admitted. So here we are once again. Makenzie feels just fine and is socializing with everyone. If her scope tomorrow is okay then we will leave again--but they just dont want to take any chances. So I should know the results tomorrow evening about the biopsy and will let you all know. Thanks again for everything so many of you continue to do. I can never thank you enough. Special thoughts going out for Miss Hannah this evening as she needs to perk up a bit---hoping for her to feel better soon.

Wednesday, January 5, 2005 10:17 PM CST

Hi again. Im sorry it has again taken me a few days to post. Things just remain hectic and hard to keep up with at times. After Makenzie's scope New Years Eve it was decided the bleeding was probably from an ulcer that we just couldnt get in far enough to see. Her biopsy from that scope was perfect so that was good. They upped several antacid type meds and the bleeding was under control in a day or so with her only needing one blood transfusion. On Monday they decided she was well enough to leave so back to the hotel we came. It has taken days to get her room livable and supplies straight but that is finally in order. She was scoped again on Tuesday and I got a call earlier this evening that that biopsy showed some questionable spots---hopefully it is nothing since she seems to feeling fine and her output is manageable still. They want to see her in clinic tomorrow and then scope her again Friday morning unless she shows any signs of problems before then. She has spent the last three days here at the hotel playing all evening with her new transplant friend, Emily. They are the same age and so cute together--it has been nice for me as well getting to know her Mom who is also a nurse. We have plenty to talk about. Ill post a picture of Makenzie and Emily together soon. We are all going to see Sesame Street Live next week if they are both healthy. Nana and PaPaw are coming to go as well. Lets just hope they are both feeling okay. Makenzie is already stressing about it---haha. She keeps saying "Now, Big Bird isnt going to come down is he?"--she says that about 20 times a day. So we told her if he did that Papaw would sit in his lap--so now she shares that with everyone. It is nice to see her feeling so good. She takes off down the hall to see Ian and Marta and Bret and Traci--couldnt care less if I follow her--she is quite independent when she feels good. That is about it from here. Ill post more when I see what happens over the next couple of days. Please continue to send up special prayers for our buddy Destiny and her mom--they can certainly use them. Thank all of you for continuing to support us through all of this--your help is priceless.

Friday, December 31, 2004 8:40 PM CST

Well things just cant seem to get boring around here. After several days of feeling bad and looking even worse, Makenzie had started to finally get things back together. Her counts were all coming back up nicely--we have stopped her tpn and she is eating okay. When she was sick she had quit eating and FK levels went sky high to the tune of about 65 or so and so her kidneys werent working so hot--but all of that was pretty much better by this morning. When they made rounds this morning I asked to be discharged---they asked if we would just go out on pass and then come back and sleep here until Monday when it is easier to get home care and stuff so I said fine. Makenzie and I went to the hotel and took long baths---Dan and Shelle and Hannah came up because Miss Hannah was in need of a tune up--so they brought my car and belongings up. I was getting ready to take Makenzie back over to the hotel when she turns around and has an ostomy bag full of bright red blood. So thank goodness we didnt get discharged or we would have been right back. GI was called into scope her--it doesnt look like rejection although we wont know for sure until tomorrow---looks more like maybe bleeding ulcers or something. Just going to watch for tonight and give her some platelets to help the bleeding stop. She feels fine and is running all over the floor--so I wont complain about New Year starting in here. Hopefully this is just how she wanted to ring the old year out and the new one will be much more boring. Wishing all of you a safe and wonderful New Year.

Sunday, December 26, 2004 9:46 PM CST

And my how quickly things still change here. 12 hours after the Christmas day post Makenzie decided to spike a fever right before bed. Off to the local ER here--spent the night there waiting for an ambulance to transport her back to Pitt. She is safe and sound back here at George's House again. Seems she has some bugs growing from her blood culture---line infection. With any luck it will be easily treated but hard telling. She feels nasty and has slept most all day. Ill post more when I can. Very thankful she enjoyed her Christmas first--just wish she would have waited another 12 hours as we were on our way back then anyway. Instead my Mom and Dad drove my car three hours today and dropped it off with Dan and Shelle and Hannah who are going to try and bring it later in the week. Thanks to them, to mom and dad and also to Traci for gathering me enough stuff from the hotel to live on for a while. Lets hope this clears up soon. Just goes to show you cant ever get too comfortable around here.

Saturday, December 25, 2004 10:22 AM CST

Hello to all---I am sorry I havent updated in a bit. Things continue to be a bit hectic. We made a quick trip back to WV last week in the snow for the funeral then back to Pitt. Scopes and biopsies and clinic and getting ready for Christmas.....but we have still taken the time to enjoy having Makenzie with us. Her last biopsy was the best so far, output is getting better and everything in general is okay--that is the best Christmas present we could have. We were allowed to bring Makenzie's to Nana and PawPaws for Christmas which was also a great gift. She had a ball--waiting for Santa, leaving cookies and milk, and opening gifts. She didnt even care what was in most of them--she just loves opening. She got everything she wanted and a suprise riding horse which she rides and rides and feeds carrots to. It has been a wonderful Christmas for her for which I am very grateful. Before we left for home the hotel where we have been staying had a party for the sick kids that were there. Everyone that works at the front desk chipped in and bought gifts for them, had lunch and even had Santa come and pass the gifts out. They made so many kids smile that day---another example of the true meaning of Christmas. People going out of the way for kids like these and adding such joy to their lives. So many people have done so many things for us this season and this entire year that it would be impossible to thank everyone individually. Just know how much we appreciate everything that has been done to Makenzie the happy smiling baby that she is. You have all been a huge part of the person she is becoming. We hope all of you have had a wonderful Christmas and been with the ones you love. Keep saying special prayers for out little friend Dessy who is back in the ICU. Also prayers for all of our transplant friends new and old. You have all become a very special family to us--we love you all. Merry Christmas!!!
Ill post new pics tonight or tomorrow of Makenzies Christmas---we will be thinking of you all.

Tuesday, December 14, 2004 8:57 PM CST

Im sorry it has taken me a while to update. Things have been more than a bit hectic. Makenzie did get discharged from the hospital on Friday and has done well so far. No major changes--just hoping she improves slowly. My best friend Rhonda's dad, Vern (Papaw Bern to Makenzie) took a bad fall on Saturday night. He was taken to Roanoke and surgery was done but brain damage was too significant and he passed away yesterday. You will be so missed Vern. He has been like a second dad to me since I was 10 years old. Still impossible for me to believe almost. The doctors in Pitt agreed to let me come home for the funeral so we are here now---having to do bloodwork in the morning then off to Princeton for two days then back to Pittsburgh on Friday. Such a very sad time for all of us. Please keep his family in your prayers. They are my family too. A huge hole is now left where Vern is supposed to be.

Thursday, December 9, 2004 9:16 PM CST

Quietly Ill say that the tentative plan it to discharge Makenzie to the hotel tomorrow. Her body for sure isnt the same one we got here with--but as for her personality--she is back in full force. She will go home on full IV nutrition again just like before transplant as well as IV steroids and albumin. We will have to do frequent labs as well. But just getting to sleep in a real bed at the hotel will be nice. Ill post her new address and phone number on the front page. I, for one, am ready to get out of here. She, on the other hand will miss Georges house--she likes it here for whatever reason. Our friend Izzie got released today--so I am hoping that will help her not to want to stick around here. Thank you all for everything you continue to do for us.

Monday, December 6, 2004 8:05 AM CST

Very hard to believe that this journey all started 3 years ago today. That was a very exciting day that turned into a scary and sad one at the same time. Life as I knew and expected it to be changed forever. In the beginning it was very difficult, but with the help of family and friends it soon became our normal. Now, I wouldnt have traded this for anything, as difficult as it has been. Makenzie has grown into a beautiful, smart, funny little girl full of spirit. She has brought wonderful things into this world--not only to me and my family and friends, but to anyone that meets here. Thank you God for letting me be her mom. Thank you for all of the special people here in Pittsburgh that made her birthday so very special even though we are away from home. You are all like family to us. Here is a story that I read about having a child with special needs---it really does describe what it is like. Happy 3rd Birthday Sweet Baby Makenzie!!!!!!!!!!! Ill post pictures from her very special birthday party later today.

Welcome to Holland ~by Emily Perl Kingsley

Someone once asked the following question:
Why did it happen to us and not our friends or that famous person? Why do I feel like this? I wouldn't wish this on anyone. Do these thoughts go through other peoples minds?"

To describe the experience of raising a child with a disability - to try to help people who had not shared that unique experience to understand it, to imagine how it would feel. The author said, "It’s like this......

When you're going to have a baby, it's like planning a fabulous vacation a trip - to Italy. You buy a load of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?!? I signed up for Italy! I'm supposed to be in Italy! All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while, you catch your breath, you look around.... and you begin to notice that Holland has windmills.... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned. And the pain of that will never, ever go away... because the loss of that dream is a very, very significant loss.

But... if you spend your Life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%
And now the sequel.........

Celebrating Holland- I'm Home
By Cathy Anthony

I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned. I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger, the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time.

I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends.

Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad.

I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?

Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its tulips, windmills and Rembrandts.

I have come to love Holland and call it Home. I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.

Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined!

Wednesday, December 1, 2004 10:39 PM CST

Just a quick update as I am about ready for bed. Makenzie has been feeling fine. She is riding a bike in the halls so fast I have to jog to keep up with her---her spirits are great. We are getting to leave to hospital about 6 hours a day and go to the hotel which has made a ton of difference--for me anyway---after a few she cries and says she wants to go back to "Georges house"( the hospital). Her output has been about 3 1/2 liters a day for past few which is better than the 4 1/2 it has been--but no where near enough to get us out of here. Her big 3 birthday is Monday and we are hoping to have her a party at the hotel Saturday--she is very excited and wants everyone to wear a hat---whatever makes her happy. She has asked for a Princess Bike so we found one of those---just hoping she likes it as much as the one we borrowed from PT. Her last scope looked a bit better---baby steps. Off for another scope first thing in the morning. Nana and PawPaw are coming tomorrow for the weekend--so we are looking forward to that as well. Ill post more soon---thanks for continuing to check on us.

Thursday, November 25, 2004 11:13 AM CST

We just wanted to take a minute to wish everyone a wonderful Thanksgiving. I hope you all are able to spend the day with either family or friends. We often spend our time journaling on here about thanking our family and friends. We are always grateful for all of the support we constantly receive from you and know that without you we would have never survived the past 3 years. It truly has taken a village to raise Makenzie and I want to thank all of you that have been a part of that village. But I also want to take some extra time out today to thank total strangers that have been part of our village. These people are teach what the true meaning of the holidays is all about. They go out of their way to help us when they have no stake in the outcome of our lives. This includes total strangers that have heard about Makenzie and helped us by sending gifts when she is sick and donated to her trust fund, Mr Mahoney whose foundation, Jesica's Hope Chest is the only reason Makenzie still has a house to live in, our tpn and gifts support group friends most of which we have never met in person who provide support on a daily basis (and the people that truly understand the life we live as they live it too), the lady at Sears that took Makenzie's picture last week---we had never even met her before and she called us yesterday to make sure we had somewhere to have Thanksgiving dinner and if not, wanted us to join her family---reminding us in a big way what goodness there still is in this world--and most importantly, the strangers that became Makenzie's "donor family" as they made the most important decision of all and is the only reason she is still here with us. So again thanks to our family and friends even though we are far away from you this year. Thanks to God for choosing me to be Makenzie's mom and letting her still be here with us. May each of you be blessed with a wonderful Thanksgiving day. We will be joining some new friends of ours that feel like we have already known forever--thanks to them for making this a special day for us--we love you guys--Traci, Mike, Ian and Marta. As each of you gather with your families today, please keep Makenzie in your prayers that she gets well soon, and know we will be keeping each of you in our prayers as well---God Bless.
P.S. I have added Makenzie's newest pictures that let me take her out and get done a few days ago. Im sure it is hard to believe how good she looks considering all that has been going on. So hoping she will get some better and at least get out of the hospital soon--she is such a trooper---hope you enjoy her pictures.

Tuesday, November 23, 2004 9:27 PM CST

Well I am about worn out today as the old Mak has been back in full force. Playing all day and talking with ceasing for hours. Our friend Izzie went and bought herself a new baby stroller at Toys R Us and Makenzie has walked with it all day--so nice of Izzie to let her do that with her new toy. Makenzie said "I need one of these at my birthday time"--so Im sure she will have one of her own before long. The doctors came this evening and said her biopsy looked much better---no rejection and much less virus than before. We talked about the spot on her liver and we will just continue to watch it for now and rescan her in a few weeks. They are all pleased since she looks so good--but she is still putting out 4 liters a day---they say they will give that several weeks before they are concerned about. They let me sneak her out yesterday and take her to get her pictures done at Sears. They turned out really cute and Ill post some here as soon as I can get someone to scan them for me. Then we stopped by the mall to see Santa really quick. I was sure she was going to be scared of him---boy was I wrong. She went right up to him and sat in his lap and told him she wanted a Barbie jeep and a Barbie house and smiled for a picture and gave him a hug. Our big issue now is that the things she wants from him are too big to have here--so we are either going to just wait and have Christmas when she gets home---or if that is months from now just have Santa take those toys to her house and send us a picture here of them---will have to worry about that another time and hope she finds something smaller that she wants just as much. Her birthday party is supposed to be next Saturday--so i really need to get on the ball and get that organized. Not sure what we are going to do for Thanksgiving as yet--may just stay here, or we have been invited to go to the Ronald McDonald house by friends there and also to go with Ians family for dinner--we may do that especially since there wont be many kids around. We have so much to be thankful for even though we have to be away from family and friends. We are so lucky to have some of our old friends here and also to be getting to know Ian and Izzies families both so well. It has made a huge difference. Thank you to everyone for all you do for us. I could never begin to name everyone without forgetting so many and so Ill just say how much we appreciate all of the gifts, cards, emails, ecards, and phone calls. Always nice to know you are remembered. Our support system is amazing. That is all from here right now--you all have a wonderful holiday and just enjoy your families. Oh, and I almost forgot to add---our room number changed today as they put us in a bigger room---so the new roon number is 7640 and the phone number is 412-692-8168.

Saturday, November 20, 2004 1:49 PM CST

Sorry I have been a bit slow on the updating. Makenzie had another scope on Thursday---that one continues to show adenovirus and few other changes--so they increased her FK again slightly and will continue to watch. She has been started on a new medicine to try and help her fight the adenovirus--it is very hard on the kidneys though so she is being flooded with fluids to try and keep them flushed out. This morning is the first morning in over a week she hasnt woke up with a fever so we hopeful that maybe the drug is working. She had a CT yesterday that showed 2 spots on her liver---they arent sure if it is the virus or something called PTLD---they wont do a biopsy for a while because we cant do anything to treat it either way more than what we are doing. So she will get scanned again in 4 weeks and see what it looks like then and then biopsy it if necessary. Her output remains at over 4 liters a day---but most importantly she feels pretty good today. We got a huge bag of goodies from our tpn support group today which was awesome. This is a group that truly understands what all of Makenzies life is like as they live it too---they are an amazing bunch of people that I am proud to call friends. We hope everyone reading this is having a great day. We are going to try and sneak out Monday and get Makenzie's pictures taken at Sears here in Pitt---crossing our fingers that she feels good enough to go. Thank you all for checking in on us.

Tuesday, November 16, 2004 9:49 PM CST

Well the good news it that her biopsy showed no rejection. The bad news it that adenovirus is showing up now prominently in the bowel. She had this once before a few months after transplant---she neat it pretty easy that time. The problem this time is because of all of the OKT3 and Rituximab she received--she has nothing left to fight this with. So there is a med out there they are wanting to try for her. It is really hard on the kidneys though--so tonight they put a catheter in her bladder so they could do some kidney tests before they give it to her--she only has to keep it for 24 hours. Strangely enough she likes "her little bag" and cries when she thinks someone is going to take it away from her--she can be an odd little bird. Tomorrow morning she has to go for a CT scan to make sure the adeno isnt in her liver--she cant eat until that is done so I hope it is early. They are having to drop her immunesupression drugs lower and cut her steroids in half--so lets all just hope she doesnt reject again. They will scope her twice a week for a while to monitor it closely. It is going to be a very delicate balance. That is about it from here---we had a very good visit with Nana this week and we were sad to see her leave. They will come back for Makenzies birthday in a couple of weeks which isnt that far off. Looking forward to having them back. Please continue to keep Makenzie in your prayers as we need for all of this to work right and for her not to reject anymore. Will post more as things occur.

Monday, November 15, 2004 8:21 AM CST

Makenzie had her scope this morning and it looks a little better. I think the progress is alot slower than they had hoped but it is progress nonetheless. She is bleeding quite a bit from it this morning which is new but we will just watch it and see. Still having fevers on and off---that may now be from a virus she has picked up instead of rejection. She is no where near getting out of here, but we have been able to get her off of fluids for 4 hours a day and with that they will let me take her out of the hospital for that amount of time. Thinking im going to bundle her up today and take her and get her hair cut somewhere. She is supposed to get her pictures done next monday if she feels okay. I may wait and get her birthday pictures done when she is feeling a bit better and just try and take her and get some Christmas shots done. We will see, may just have to do without this year. Going to try and start planning her a little birthday party here since it seems we will be here all through that. Hopefully we will be at the hotel by then and can just have some friends over there. We sure are going to miss being at home for that this year being as we always have a huge gathering for her birthday. But we will stay here until she gets well and not complain. Ill update more after her biopsy comes back--will be tomorrow sometime. Thanks again for always checking in on us.

Friday, November 12, 2004 9:49 PM CST

Hi again. Dr Mazareigos came in this evening and said that the biopsy did lok much better, but...(why is there always a but)--she has several cells on her slide that are probably adenovirus. She apparently also had a culture that was positive for it a few days ago. She had this before not long after transplant--but we certainly didnt want it again now. In order for the virus not to get worse and worse we are stopping the OKT3 today and are having to drop her IV steroids some--and just pray she doesnt reject again. If it isnt one thing it is another. It is going to continue to be a tough balancing act. She will get scoped again on Monday to see if the bowel has any adverse reaction to stopping the OKT3. On a good note, Nana and Papaw came to visit today. Makenzie was glad to see them and them her I am sure. She was able to be off of fluids for a couple of hours today so they let me take her to the hotel for a quick visit---she just kept wanting to see the pool. She tired out very quickly and said she wanted to go back to Georges House--which is what she calls the hospital. That is about it from here. Ill post when anything happens over the weekend---please continue to keep her in your prayers.

Thursday, November 11, 2004 8:40 AM CST

I will quietly say that Makenzies scope this morning looked better. On the pictures you could see tissue growing back which is good. There was an area that looks like an old site we biopsied a while back is about to bleed--so we will watch that. If it does bleed they will have to cauterize it at some point. So she is getting a bunch of blood today to pump her back up. Other than that things are mostly quiet. Nana and Papaw are coming for a visit tomorrow so we are looking forward to that. For now the plan is to keep her on OKT3 through the weekend and scope again Monday---Ill post when anything else happens. Thanks for always checking in on us.

Monday, November 8, 2004 10:52 PM CST

Hi again--well the scope still looked pretty rough this morning. They came in this evening and said that it looked about the same as last week but it did have some areas of regrowth. So they are going to leave her just on the OKT3 for now and scope her again thursday or friday. She still feels pretty rough. This evening her FK level, which is her immune supression drug came back way to low--so we had to put an IV in Maks hand which needless to say she didnt appreciate. She is still a trouper though. We will check her levels again tomorrow--not sure why it dropped so low. Onto another story---we were in the elevator today and a lady got on there that worked here and she was carrying a little IV pump--Makenzie looked at her and said "Is it time to hook your baby up?" In some ways that is so sad that any 2 year old would even think that---but in some ways I guess it is a blessing--this is the only life she has ever known so none of it seems out of order to her. Since it has to be this way, it is good that she thinks that everyone is the same. You cant get much past her that is for sure. Maks Nana and Papaw are going to come see her next weekend and she is getting pretty excited---she keeps asking if Kessie is coming too---but I dont think that is going to happen. Soon Makenzie, soon.........

Friday, November 5, 2004 9:41 AM CST

Update from the biopsy:
The Dr. came in this evening and said that MAYBE her biopsy looked the SLIGHTEST but better---but still nasty. So the plan it to leave her on OKT3 until Monday and scope her again. If it is better or the same leave her on it for 10 days----if it is worse then they will start her on a drug called Campath. Another very nasty drug--but we dont really have much choice. Ill keep everyone updated--please keep her in your prayers.



Well Makenzie had her scope this morning. It really doesnt look any better. I honestly couldnt tell if it was any worse or not. They sent her biopsy early so it would be back this evening. If it is worse then they will have to decide what to do. They have been talking about a new med that has never been used on kids here, only adults. We certainly dont want to be the first to try--but we may be running out of options where that is concerned. I will add an update to this one later this evening after we get the biopsy back. Thanks for all of the continued support and prayers. In the meantime I am going to add a few other pics of Makenzie that I didnt share before of her trip to Montana.

Monday, November 1, 2004 9:16 PM CST

Just wanted to write a quick update. As most of you know our good news was short lived. Rejection was back on Friday--scope looked worse today. They decided to try putting her back on OKT3 for a few days to see if they can get it all back under control. If that works she will have to stay on IV steroids until she quits putting so much out. This is the nasty medicine that made her feel so bad--so just hoping it works quick and she doesnt have to stay on it too long. Will update as things happen. Please continue to keep her in your thoughts and prayers as she battles this yet again.

Sunday, October 31, 2004 7:30 PM CST

Sorry I havent been able to post for a few days--something has been up with the computer. Not even sure where I left off. Friday morning Makenzie spiked a temp--went back for another scope and Sat it showed she was back in moderate rejection. They think maybe since her output was so high that she didnt absorb the steroids she was taking by mouth. So anyway--back on high dose IV steroids and another scope in the morning. I am guessing it is going to look nasty again since we took another step back---but Ill hold judgment until after I see it. So no closer to getting well at this point. Fortunately she does feel better and was able to go trick or treating here---ill add a couple of her pics on her page from that. Will post tomorrow when I know more.

Sunday, October 31, 2004 7:28 PM CST

test

Thursday, October 28, 2004 7:22 PM CDT

Not much going on here. Makenzie is feeling good and playing most of the day. Her labs are fine. She will have another scope on Monday---still putting out over 4 liters a day which is ridiculous. Hoping it slows down soon. Someone brought a minature pony in to see the kids today--she thought that was pretty neat. Special nods of thanks to several people today. I wont mention names but you know who you are and what all you have done to help us. Without the generosity of so many we would be up a creek. Makenzie is going trick or treating tomorrow--ill try and get a few pics to share.

Wednesday, October 27, 2004 11:19 AM CDT

The doctors came by last evening and said Makenzie's new biopsy looked great. They stopped her IV steroids and put her once a day oral prednisone. Hopefully that will decrease her appetite some and if she eats less maybe she will put less out. She still had 4 liters out today but they say we are just going to have to wait this out until it heals which can take some time--but they say they have beat this rejection which is wonderful news. So now to just get out output to a place where I can handle fluids at the hotel. Would just be nice to get there for a while. Other than that not much happening here. Prayers for Ian as he is having a bit of a rough go and isnt feeling the best. Also for Izzie who is still in PICU after receiving her new organs. And always for Miss Dess who sometimes just cant seem to catch a break. Will update soon.

Monday, October 25, 2004 6:59 PM CDT

Thanks everyone for checking in on Makenzie. We just continue to hang out her in Pittsburgh. Makenzie had her scope this morning--it definetly looked better. Not perfect but better. I ran into Dr Mazareigos a few minutes ago and he just quickly came by and said Makenzie got the "most improved biopsy of the week award"---I told him we would take it. That is about all I know. Usually the biopsies arent back until tomorrow but maybe since hers was done so early they got it back this evening. I will talk to him further about it in the morning. She still continues to have out over 3 liters a day---so until that settles down some we will never get out of here. She is eating everything that isnt tied down because of the steroids which doesnt help matters--so hopefully they will cut those back some tomorrow too. Ill let you know. Thanks again for continuing to check on us.

Wednesday, October 20, 2004 9:22 AM CDT

Nothing much new happening here. Just trying to wait this out. They say she is getting better so we just have to believe that. No real plans for the week other than to keep her hydrated and scope her again on Monday unless anything changes before then. Hopefully they will decrease her steroids some today and maybe she wont be so grouchy. Anyway, I just wanted to share some of the pics we took while in Montana--so hard to believe that was only 3 weeks ago. Ill get a picture of her today sometime and add it so you can see what a difference steroids make. But until then, hope you enjoy these pictures. This front picture is of Makenzie and Sugar. Sugar was by far the highlight of Makenzie's trip. She was so proud that she rode him all by herself. Thanks to everyone that made that happen. Ill post when anything happens here. Thanks to everyone for the thoughts and prayers and for all of the goody packages that seem to be arriving often. We appreciate all that everyone is doing.

Monday, October 18, 2004 7:13 PM CDT

Hi all. Well this evening the doctors came and said her biopsy looks better. Still has a ways to go but definetly better. They say there is still "activity" going on but that it doesnt so much look like rejection. So the plan for now is just to keep giving her steroids and keep a high FK level and scope her again in a week. She is still putting out tons so we cant get her off of 24 hour IV fluids or the TPN right now. She is so hungry from the steroids that she eats all day. She is eating things she would never even eat before and tons of it. She is still pretty grouchy but we are hoping for that to get better when they can drop the steroids some. Being here today is kind of like old home week---us, Destiny and her Mom, Justin and his Mom and now Hannah is on her way in. The best part of old home week for us came this morning when Jorge Reyes walked in her room to see her. That is her transplant surgeon that left and went to Seattle that we miss so terribly. It was so comforting to get his opinion and just have him see her. That is about it from here. Someone is scanning a bunch of pictures for me from our trip to Yellowstone and I should have them tomorrow--Ill add them to her site a few at a time. Hard to believe that was only a few weeks ago. Seems like forever. Will post again as things happen. Thanks for continuing to keep us in your thoughts and prayers.

Sunday, October 17, 2004 1:47 PM CDT

I had put the wrong zip on here if anyone use it--it is supposed to be 15213--it is fixed now.

Not much going on here today. Makenzie is about the same. Still pretty miserable. She got her last dose of OKT3 this morning. They will scope her again tomorrow morning and then we will go from there. The bowel still isnt working--but we know it can take weeks to months after a bad rejection episode to get it back to where it was. So what we hope for now is just that the rejection is gone so she can start the healing process. That is about it from here today. Ill post more tomorrow after her scope. Special prayers going out to our friend Caleb who is having a few issues--and also to our new friends Ian and his mom Traci--Ian got his new organs yesterday and is doing great. Special thanks to all of the donor families out there that make these miracles possible.

Thursday, October 14, 2004 8:12 PM CDT

Just a quick note--i had the wrong zip on here for anyone that used it--it is now fixed. Will update more later today.



The saga continues. Makenzie was scoped again this morning. They came in this evening and said the biopsy shows a bunch of regenerative tissue which is good, but at the bottom level still shows some rejection. So they are giving her another dose of OKT3 tonight and will continue it through Monday when she will be scoped again. She has still had periods of bleeding on and off and required a couple of transfusions. She is still feeling pretty nasty and will until we can get her off of the OKT3 and get the steroids down some--so it is going to be a long road. She remains antisocial and wont talk to anyone, but every once in a while she will laugh about something. We will just have to be patient. On another note, my grandmother died this morning. It is a relief knowing she is now where she always wanted to be, but still we wish we could be home with family. Ill post more tomorrow.

Wednesday, October 13, 2004 8:12 PM CDT

The doctors came by again a few minutes ago and said that after looking at Makenzie's biopsy slides again they have decided that all of the "activity" on there was regeneration instead of rejection. So that would be a good thing for sure. Means the tissue is growing back. They are holding her OKT3 dose for tomorrow and scoping her first thing in the morning--they are doing her early so we can get the results tomorrow afternoon and decide what to do. Either way, the bowel isnt absorbing anything and we chase our tails all day trying to replace all of her lost fluids. They say it can take weeks to months to get it working properly again. But anyway--she seemed to feel some better again today. She has only had a few moments of having fits instead of all day. We are off to bed. Ill update tomorrow.

Tuesday, October 12, 2004 8:05 PM CDT

Hi again. Just talked with the doctors and Makenzie's biopsy from Monday continues to show rejection but it does look some better. So the plan for now is to continue with the OKT3 and do another scope and biopsy on Thursday. She remains cranky and not herself--but a few times a day her personality shines through. Today she got a package from Logan and Kara and Grant and another from Bri and Dylan and Lynne---both times she got very excited and laughed and smiled for a while--thank you for lighting up her day. Her bleeding has gotten better this afternoon and she hasnt needed anymore blood since yesterday. She spent most of the day riding in the wagon which makes her happy. I will keep everyone posted on what happens in the coming days. Thanks for all of the continued support, emails, cards, phone calls and everything--we couldnt do this without all of you. I have been asked by many people for an address for Makenzie--so Ill add it to her front page. Oh, and I also forgot to add that you can also send Makenzie ecards if you like---go to chp.edu and go to Get Well Mail and it will show you how--she is in room 7662.

Monday, October 11, 2004 10:00 AM CDT

Well we are back from scope and it definetly looks better. It still has a long long way to go but does show improvment. There are many areas that dont have any tissue growing back--but several areas that do, which is a start. The biopsies wont be back until tomorrow to show if there is still any rejection activity going on or if this is just the healing process. Regardless she is going to be taking the OKT3 for another 4 days and then scoped again on Thursday. That is about it from here. I will keep everyone updated on her progress. Planning on being here a few months at least.

Sunday, October 10, 2004 7:57 PM CDT

Just a quick update. Makenzie has felt a little better each day. We will know what all is going to happen tomorrow after her scope and biopsies. Please everyone say a prayer that it is starting to look better. We cant expect dramatic improvment--but just any will do. She is on full TPN again and will be for a while. She isnt absorbing anything at all--so she stays hungry. Now when she gets too humgry we just give her some Benadryl and let her go to sleep. I will post an update tomorrow after the scope and let everyone know how things look.

Thursday, October 7, 2004 10:58 PM CDT

Makenzie is at least feeling a little better today. She woke up and actually talked and walked some and was even laughing at some points. Huge change from the past few days. So, hopefully the medicine, as nasty as it is, is helping. They arent going to look at it again until Monday---so we will just play it by ear until then. The part of the bowel you can see still looks nasty, but cant tell for sure. Makenzie asked the doc when he came by today "Dr Sindhi? Can I go to the hotel?"--he said "Uh--no"--then she said "Will you call us when i can go?"--he said sure. Too cute. She certainly has a little bit of spunk back. The bowel isnt working all so we are back to square one in that dept. Today looked like old times around here. In order to make both of us feel better, Mak had her first bag of TPN again and I sat down with a cheeseburger and fries. Couldnt eat much but sure did help. We will keep everyone updated. Special prayers going out for old friends of ours whose son was killed last week in Iraq and then 7 days later the mother/wife (our friend) also died at age 45 from an aneurysm. Peace be to them. Also prayers for my family as my grandmother will be passing anytime. Wish I could be there with you all.

Wednesday, October 6, 2004 11:49 PM CDT

Hi all--this is going to brief. Sorry I couldnt post sooner. For those that havent caught up--basically they started treatment for what was mild rejection on Friday---rescoped her Monday and it was scary--the bowel was literally falling apart. Not sure they have seen this happen so quick. She has become very ill. She was transferred to PICU and started on OKT3 and Rituximab to try and beat the rejection and kill the EBV cells too before they too are a big problem. She wouldnt even talk for a couple of days--just laying around miserable and on Morphine for pain. She was brought back to the floor this evening but continues to have episodes of bleeding. They decided to wait until Monday to rescope her--didnt want to stir up more trouble too soon and try and give the bowel a chance to heal. This is the only form of treatment anyway. It is a last ditch effort. She actually sat up for an hour this evening and talked some--but we wont know much more until some time has passed. It is so hard to believe this is even the same little girl that was out in Montana riding Sugar just over a week ago. Please continue to keep her in your prayers and I will update when i know more.

Saturday, October 2, 2004 9:07 PM CDT

Makenzie's biopsy confirmed that she is having an episode of rejection. Kind of what we figured it was since we have to keep her immune suppression so low because of the EBV. The biopsy still did show EBV as well--so this may be tricky trying to get her well without stirring up the EBV too much. They have started Makenzie on high doses of steroids and increased her FK---and she is very ugly on the steroids. She is rather miserable and screams and cries most of the day when she is awake. Hopefully she wont need them too long. They will rescope her next week sometime--but she isnt showing any signs of improving as of yet. Ill keep everyone updated--please continue to keep her in your thoughts and prayers.

Wednesday, September 29, 2004 11:11 PM CDT

My how quickly things can change. Makenzie and I returned from vacation on Sunday--it is now Wednesday and she and I are now back in Childrens in Pittsburgh. Her output is way up and she now has a temp. They will scope her first thing in the morning and hopefully we will know more tomorrow night. Please continue to pray that this clears quickly. Ill update when I know more. Special prayers going out to Destiny and Christie tomorrow for Dess' surgery. And nice to get to meet other TPN family that we had never met before.

Saturday, September 25, 2004 0:04 AM CDT

Just wanted to write a quick update. Makenzie and I are still on our vacation out west and having a ball. So nice to be comfortable enough to bring her all the way here. We spent several days last week in Yellowstone which was beautiful. We got to see many buffalo, elk and even a bear. Makenzie has had more fun though hanging out with Michele and Glen and Brenda and getting to know them. Tonight however was the most fun she has had. Some of Brenda and Glens neighbors have horses and they saddled them up and brought them for Makenzie to ride. She was a little unsure at first but by the end of the evening was riding alone and screamed and cried when we made her get off. So much that they are bringing them back tomorrow for her to ride. She talked about Sugar and Buddy all evening until she finally went to sleep. I think she thinks we are bringing Sugar back to VA. She keeps saying she has a place for her. We will be heading back to VA on Sunday. Cant believe how fast this has all gone by. We cant wait to come back. Ill post more and some new pictures of everyone here after I get back to town. So grateful for Makenzie's health and being able to make this trip. And so happy that Makenzie has gotten to know everyone here that cares so much about her. Grateful for so many things....

Monday, September 13, 2004 7:17 AM CDT

Things are all quiet around here which is nice. Makenzie has been feeling good. We are heading on vacation soon for Montana--just trying to keep her well until then. May not update until we get back so it will be a while. Thank you all for checking in on Makenzie.

Wednesday, September 1, 2004 8:16 PM CDT

The past couple of days have been so refreshing. Some days you can almost forget that Makenzie has ever been sick--and that is what the last few days have been like. My best friend and I have spent two full days just hanging out and running around. Taking the kids to the malls and to Chuckie Cheese. Watching Mak just getting in line and playing on a slide with a dozen other kids---no one knew there was anything different about her. It was a joy to see. Sometimes it is just nice to forget a while. I will find out tomorrow about whether or not we will be moving. Not sure how I feel about it. I will miss being here for sure---but Makenzie will need to be closer to my family when I have to go back to work in a hospital. It wont happen for a while--but better for everything not to happen at once. It is out of my hands now so whichever way it goes Ill be fine. That is about it from here. Getting excited for our upcoming vacation to Montana--a little stressed about the long flight with Makenzie--but I believe everything will be okay. Will let you know when there is any more news.

Sunday, August 22, 2004 9:20 PM CDT

Well we are back from yet anotehr trip to Pittsburgh. This one was partly for fun. We met up with our friends Kara and Grant and Logan and took the kids to the Wiggles concert. They had a ball. Id add some pictures of it but seems I lost that roll of film. It was so good to get to see them though. Went shopping on Friday which is always bad--Im lucky they dont live any closer or Id be broke. We also got to see our buddies Korri and Jared and Caleb--so happy that Calebs surgery went well and now hoping he gets back to Texas next week. As for the scope and clinic visit---not many changes. The scope still shows EBV in the bowel--but we will have to wait until tomorrow to see if they want to make any changes. We are hoping to not have to go back until November which would be great. Next trip is the big one to Montana-so hoping she will stay well until then. Hoping just for a quiet week around here this week and not much driving---done too much of that lately. Thank you all for the continued support.

Tuesday, August 17, 2004 10:15 PM CDT

Im sorry it has taken me a little while to update---but we have been out doing fun things for a change. Last week some friends invited us to go on their vacation to the Smoky Mountains, so we decided to just go. Makenzie had a ball. She went fishing, and learned to flatfoot. She went on rides and saw bears and met indians. We were in a tour of an indian village learning how they used to do things and Makenzie kept screaming "Where are the monkeys?"---I think she has been to a few too many zoos. I ended up coming home with a cold--but so far Mak seems fine. We got back from there on Sunday and then Monday took Nana and Pawpaw and drove to the WV State Fair---she loved that too. She got to ride a real pony--Thunder---and saw tons of animals---rode a bunch of rides again and just had a great time. We got back to VA this afternoon and have spent the days unpacking and repacking because we have to head back to Pittsburgh first thing in the morning. She has scope and clinic Thursday and then Thursday afternoon Mak and I are joining Logan and Kara and Grant and going to see the Wiggles---very excited to see them. I have added new pictures of Maks week adventure so go see them. You can see how fat her little face has gotten because of the Prednisone---but hopefully she will get off of it again in a few months. Please keep our little buddy Caleb in your prayers as he is back in Pitt and had another surgery today---and always for Destiny who really needs to start getting better. I will update again after we get back to town Sat---thank you for all of the continued support.

Monday, August 2, 2004 8:35 PM CDT

Makenzie and I are back in VA. We went to clinic this morning---her EBV levels were back uner 100,000 so they let us come home about which we are very glad. We have to go back in three weeks--but that is fine by us--just glad to be home. Will update as things happen.

Wednesday, July 28, 2004 9:37 PM CDT

Well Makenzie and I are visiting our home away from home in Pittsburgh. We came up today for a follow up scope and clinic visit. Found out today though that her EBV level has gone from 140,000 two weeks ago to 540,000--so we will figure out more of a plan after her scope tomorrow and in clinic Monday. They may need to do another CT scan to make sure it hasnt progressed to PTLD---but we wont decide anything for sure until Monday. She looks great though and feel it as well. I think maybe she overheard me talking about going on vacation. Please keep her in your thoughts and prayers.

Sunday, July 25, 2004 9:13 PM CDT

Things here remain the same. Makenzie looks great and acts it as well. She has spent most of the last two days on her trampoline. She just loves it. Today she ate her lunch out on it---whatever works. We head back to Pitt at the end of the week for new scopes and biopsies---I think all will be well but we will have to start getting her back off of steroids now. Im going to try and get them to go slow and not take her off until we get back from vacation in Sept. Ill post more after our trip to Pitt.

Thursday, July 15, 2004 2:21 PM CDT

Well Makenzie has been killing me all day today. As a final straw for the day she locked herself in the bathroom and I ended up having to take a hammer and knock the handle off--so now off to Walmart to buy a new handle. Having dinner with Makenzies other grandma tonight--havent seen her in a while so that should be nice. I also went out a limb today and bought Makenzie and I tickets to fly out and see family in Montana---the first vacation she has ever really been on. Im kind of leery about taking her so far away---but I guess in the long run it is only a few hours flight away if she has problems while we are gone. So looking forward to seeing our friends and family there. I guess that is all for today. Makenzie is taking a three hour nap--so I guess she will be raring to go in a few minutes. I dread seeing what all she can get into tonight.

Tuesday, July 13, 2004 8:46 PM CDT

In another step of independence Miss Mak has decided to start pottying in a potty chair. A big step here. Im trying to be patient but she insists on going about every 30 minutes. To see her you would never know she has been sick a day in her life. Swimming every day---jumping off the ladder of the pool and going under and swimming back to the ladder--all tan. Then runs around the house all day saying "Lets Pway Mommy". Seems she doesnt understand what all her life consists of--which is a good thing. An attitude I hope will carry her well through her life. Back to Pitt at the end of next week. Looking forward to catching up with some friends there. It is always refreshing to get back with people that walk in the same shoes we do.

Saturday, July 10, 2004 10:12 AM CDT

New pictures!! Makenzie seems to be growing up so fast. She enver ceases to amaze me. She has had a fun week visiting with her Nana Papaw and Uncle Greg. She is very bored now that we are back home. She would rather be visiting. Im just glad to be away from Pittsburgh again. SHe is doing so much better. Still on alot of prednisone--but otherwise almost back to normal. Thank you all for your continued support---check out her new pictures.

Monday, July 5, 2004 7:24 PM CDT

Well Makenzie has made it back to VA once again. She is feeling much better. Her EBV levels are still way too high---so they have dropped her immuno supression as low as possible. Actually taking her off of it one day a week---scary. But so far no rejection. They have decided she is having some sort of food allergy---she is now on a ton of prednisone which is making her (and me) nuts. But at least she feels good. We have been able to spend the day with friends today (Happy 4th Birthday Katie) which has been very nice. Feels like we havent been home in forever. Off on another trip tomorrow to Greensboro to get my brother from the airport. Good thing Makenzie travels well. Lets keep saying a prayer that Makenzie will have no rejection. We have to go back to Pitt on the 29th of the month---and hopefully not a minute before.

Wednesday, June 30, 2004 8:58 PM CDT

Well the results from Makenzies scope are in---it doesnt show any rejection or infection--but a massive amount of what are called eosinophils. They usually mean some sort of allergic response. So they put Makenzie on a load of steroids to try and help---and after only being on them 24 hours her output is already in half. It couldbe a long process but hopefully it will be easier to treat than some other things. We are hoping this means we wont be stuck in Pitt forever this time. Maybe even to the hotel tomorrow. Ill let you know.

Sunday, June 27, 2004 9:27 PM CDT

Well Makenzie apparently just couldnt stand being away---so today she was readmitted to Childrens Hospital in Pittsburgh. She will be getting a scope and biopsies done in the morning and I will let everyone know what that shows. I dont like being here much but she doesnt mind at all---she has spent the evening visiting with Hannah and Destiny. Hopefully we wont be here too long. Thanks for the continued prayers for Makenzie.

Sunday, June 20, 2004 8:39 AM CDT

New pictures!!!! As you can see Makenzie has had fun since we got back home. This is her face after playing in the dirt. SHe has worn everyone out playing outside since we got back. Thanks to Nana for keeping her busy while I have been trying to get things straight--that job is much harder. Things with her health are about the same. Output is still way too high---we are checking labs in the morning--between the heat and the playing outside with the high output she may end up back on some IV fluids. Hopefully not but we will see. We have to be back in Pitt now on July 1st for a new scope and clinic--hopefully she will hold off needing to go there until then. Ill post when I know more. Thanks for the continued support from everyone. We appreciate more than you know.

Friday, June 18, 2004 7:16 PM CDT

Well we went to clinic yesterday afternoon. It was decided to wait at least two weeks before we do anything else. Her biopsies still showed the virus but it looked a little better---so we left clinic at 2p and got to the hotel and literally just threw everything in the car. We left the hotel at 4p and pulled in my driveway a little after 11pm. Today has been a day of nothing but trying to sort and straighten but we are glad to be home. It is only for 12 days--but we will take them. We have to be back in Pitt on June 30th for another scope---hopefully they will continue to look better. Just continue to keep her in your thoughts and prayers---thanks you all for the continued support.

Saturday, June 12, 2004 7:56 PM CDT

Well our plans to go home got shot down. I even had the car packed. After much confusion I had decided to just go back to VA and sort it out there---but after a dozen phone calls last night plans were finally made. They arent great plans--but at least they are plans. Makenzie is to get one more dose of the medicine she has been on Monday--then she will get another scope at the end of the week. All of her biopsies have still been showing the EBV virus in her transplanted bowel. So if this one does too then she will have to start Rituxamab--which is a chemotherapy drug to try and help her kick this virus. If that happens we will end up being in Pitt much longer than expected or wanted. Ill update after her scope next week. Until then she is just having a ball---swimming every evening and running the roads during the day. We try to hit a park at least a couple nights a week which makes her happy. Thanks to Aunt Laurie and Uncle Eric for keeping my house running while I am away. We love you guys.

Tuesday, June 8, 2004 9:37 PM CDT

Makenzie is now out of the hospital and back at the hotel---we have to stay in Pittsburgh for a little while though. Originally they told us at least a month--but I am going to talk to them Thursday when we go to clinic about going home. She is doing much better---we know she will have to watched very closely with the EBV in her bowel---but I am hoping if we promise to come back every few weeks for scopes they will let us come home. We are very ready to be back there. Makenzie and I are both going a little stir crazy being here. She has enjoyed seeing her friends though and loved playing with Destiny and Justin the past few days. We went to zoo and she loved that too. Ill let you know as soon as I know anything about coming back. Thank you all for the continued support.

Saturday, May 29, 2004 8:05 PM CDT

Makenzie is still in the hospital in Pittsburgh. They found the EBV infection is present in her new bowel --- so they did full CTs to make sure it hadnt progressed anywhere. Thankfully it has not at this time. We are hoping to get discharged to the hotel on Tuesday but they told us to plan on staying in the area at least a month and then we would go from there. So that is the plan--she is still on IV fluids but they are down to 12 hours and we are starting her feeds back--so hopefully this will start clearing up soon. Thanks to everyone for checking in on her so faithfully. Ill keep you updated as to what happens next.

Sunday, May 23, 2004 2:06 PM CDT

Hi everyone--well Makenzie went for a scope in Roanoke at noon Friday and by 7pm we were back in Pittsburgh. Scope didnt look right. At first they thought it might be something called PTLD --which is bad---but today the docs here told me they dont think so now. All of her cultures are negative though but we are waiting on some special stains to come back tomorrow. Then we will decide what to try and do---she will get scoped again here either tomorrow or tuesday. SHe is back on 24 hours IV fluids--but other than that she feels fine. She has loved seeing her friends here and has spent the days with Destiny, Hannah, Justin and Reese. It hasnt been so bad but we want to be home to enjoy the new pool like we had planned to this summer. I will keep everyone updated as we know more.

Tuesday, May 18, 2004 9:37 PM CDT

Just a quick note to let you all know that Makenzie just cant shake whatever this is that she is struggling with. She still acts fine and plays fine and runs wild like usual but her output is way up. After talking with Pitt today we went up on her immunosupression just until we are sure it isnt rejection. Thing is that sometimes rejection is alot easier to treat than the other things that can bother these kids. The virus' are what can be so hard to treat. So anyway she is going Friday for an upper and lower scope and biopsies to see what is going on. She could use a few prayers that this straightens out soon. Thank you all in advance.

Saturday, May 15, 2004 9:08 PM CDT

Well Makenzie hasnt been so hot this week. Actually she seems to feel just fine but we are thinking she has a virus of some sort. We were hoping by now she would be getting over it but that doesnt seem to be happening. So on Monday we will decide what to do with her. She definetly needs a scope at some point soon--the question is whether to do it here or Pitt---doesnt really matter to me either way as long as it gets done. I will update early in the week when i know more.

Saturday, May 8, 2004 6:41 PM CDT

Well Makenzie has been running around like crazy. She has been feeling really good which is so nice to see. Her EBV levels are still high but they are going to try something different and stopped one of her meds which means she doesnt have to have her IV accessed but once every two weeks (at least for now)--so Nana and Papaw are setting her up a little swimming pool--she is so excited about it. She has already packed a suitcase to go visit this week. Yesterday we took her to a function for Childrens Miracle Network---they had Clydesdale horses there--she was really excited until we got close enough to pet them and then she freaked out. SHe did end up riding the "boat"--the carriage the horses were pulling--several times and loves it. That is about all for now. Ill keep everyone updated as things happen. Happy Mothers Day out there to all of our mother friends with special kids---we know how hard you work. And Happy Mothers Day to Nana---we know how hard you work too--ha ha.

Wednesday, April 28, 2004 8:07 PM CDT

A year ago tonight we went to bed just like normal--not knowing what lie ahead. We were awakened at 115am by the coordinator in Pittsburgh telling us they had organs for Makenzie. Most of the rest of that day was a blur. I called Makenzies Aunt Laurie, who had just found out she was pregnant (now we know it was with Little Peyton AND Sarah), and she loaded up and headed out with us. We flew in a chartered jet to Pittsburgh and were at the hospital by 6am. Things were long through the day and they took her to surgery at 4pm--right after Nana and Papaw arrived after driving all day to get there. By midnight she was out of surgery and well on her way to becoming the little miracle she is now. Now eating and drinking and living like a normal little two year old. The change from a year ago is nothing short of amazing. She has only been in the hospital once in the last 8 months. She will always have ups and downs but we are so grateful for the chance at life she has been given. So while tomorrow we will be celebrating Makenzie's life with her friends and family, please take a moment to remember her donor family. For while tomorrow is a day of celebration for us, it is a day of grief for them---and their selfless decision has let Makenzie live another year---and Lord willing many many more. Thanks to all of Makenzies friends and family who also have made her life possible. We are blessed to have all of you in our lives.

Tuesday, April 27, 2004 8:57 PM CDT

Makenzie had a big weekend. We went to Charlotte--she stayed in the hotel with Nana while I got to go see Jimmy Buffett--always a blast. When we left we drove about 3 hours out of the way to finally get to go meet the Mahoneys. They are the founders of Jesicas Hope Chest--the foundation that saved us during the time I was out of work when Makenzie had her transplant. They are the most awesome people. We went out to dinner and they had a little impromptu "re birthday" party for her complete with ice cream and gifts. They were all big buddies before the day was done. I so hope we get to see them again. What an amazing thing they do. That is about it from our end. Special thoughts go out today to Aunt Michele in the loss of the beloved Buff---we will all miss you little girl.

Wednesday, April 21, 2004 9:20 PM CDT

Hi again. Makenzie has been doing fine. No real changes. I am wondering if we may not have some trouble this summer keeping her hydrated---we will see. She loves to be outside all day. She managed to get stung by a bee on her head this week---but that was inside---not even sure how all of that happened--but it wasnt pretty. She is going with us this weekend for her first Jimmy Buffett concert--well, she isnt really going--she is staying at the hotel--but she will think that is fun. Ill update more soon. Makenzie's one year anniversary is next Thursday---so amazing.

Wednesday, April 14, 2004 1:09 PM CDT

Ive added some new pictures on her photo page. Everything else is going fine here. Her visit in Pittsburgh went good. Everyone is thrilled with how good she looks. Her EBV level came back at 83,000 which is down but still way too high. They are trying to decide what to do about it now. They want to decrease her immunosuppression even further--but with that comes a real risk of rejection. SO we continue to walk a fine line and see what happens. She feels really good though. She had a very fun easter and is enjoying her toys. She swam every night in Pittsburgh and now still screams every night to go. She gathers up her "swimmin diaaaaper" and her Barney shoes and cries to go to the "otel". I cant wait until it gets warm enough to take her here. That is about it from here. We have to go back to Pitt in 8 weeks. Ill keep everyone updated.

Wednesday, April 7, 2004 10:04 PM CDT

Sorry I have been lazy with journal entries. Not much has been going on. Makenzie has been doing fine. We are right now in Pittsburgh again for a visit. She has her clinic visit in the morning so I will post those results after that. She has been having a ball here this trip. Funny how it sort of feels like home here a bit. She has spent the week playing with her transplant buddy Markelle and every night she has spent in the pool. It is a little bit of an ordeal since I have to remove the needle from her chest before she goes in and then each night put a new one in. But that little bit of discomfort for her has been worth all of the squeals and screams in the pool. She goes out in her little floaty by herself kicking around saying "Look Mommy". Too cute. Much opposed to earlier in the day in the mall when i was having to hold her three feet in the air by her bib overall straps while she kicked and screamed because I wouldnt let her destroy the card shop. Ahhhh--two year olds. Ya gotta love em--and we are all very grateful for this one. Special prayers going to out to some friends having a tough time---Justin, Destiny, Olivia and Hannah. We hope Caleb is feeling better and home as well. You all have become a very special family to us. We are heading to WV Friday to spend Easter with Makenzie's Nana and Papaw. She is petrified of the Easter Bunny--so she is hoping he passes her house up--I am doubting he does.

Monday, March 22, 2004 2:23 PM CST

New pictures again---what can I say--we love pictures around here. Not much else happening. I dont think Makenzie is feeling so great today. Has had a bunch of output this morning which isnt her normal--so she is getting some extra IV fluids and we will just watch and see. Cross our fingers she hasnt gotten a virus or anything--she has done so well throughout the whole virus season. Ill let you all know.

Sunday, March 21, 2004 8:53 AM CST

Not much happening here but thought id just write and let everyone know things were okay. Makenzie's last EBV number was back up to 120,000 but we will just continue to watch and give her meds for it. We are planning to go back to Pitt in two weeks for a check up so if any changes need to be made they can do it then. Otherwise things remain calm here. Makenzie spends her days playing with her toys and her Nana who is still here helping me after my surgery. Makenzie will be lost when she has to go home. Fortunately they visit very often. Makenzie is now chomping on pancakes and watching the Teletubbies for the thousandth time so all is well in our little world.

Thursday, March 11, 2004 3:40 PM CST

New Pictures! New Pictures!
Hi everyone. Just wanted to share a set of Makenzie's newest Easter pictures. She did really good for a while and then of course turned into the two year old she is. While we were trying to decide what pictures to buy Makenzie turned a huge chair over on herself and busted her lip. The lady in Walmart about freaked out---we explained that she does something like this pretty often and she quickly got over it and quit crying. We are here in WV for a few days visiting with Nana and Papaw. She is having fun as usual here. We go back to Pitt in 2 or 3 weeks just for a checkup. Overall she looks really good. Her last EBV numbers were down to 88,000 which is down some and that is all that matters. We are waiting on some new results for the last sample and Ill let you know when that comes. Thank everyone again for all of their continued support---and thanks to Makenzies Aunt Judy for the beautiful Easter dress.

Thursday, March 4, 2004 10:44 AM CST

Her are a bunch of new pictures of Makenzie. She is growing up so fast. Her new thing is that she will now put herself to bed at night and for a nap during the day. She will be playing and then around 9 each night she just says "Night Night" and off to bed she goes. She gets a stool, climbs into bed and gets under the cover and goes to sleep. She does the same thing at naptime each day. It is so funny to watch. I think part of it is because she got a VCR in her room and she knows she can go watch the Teletubbies for a while--she is obsessed with them. She is outside now playing on her new swingset that she thinks is great---she also likes just a bucket of dirt and some sticks--they provide hours of entertainment. That is about all that is going on here. Nice quiet days.....

Wednesday, February 25, 2004 3:09 PM CST

Makenzie has been doing just fine. Thank goodness for her Aunt Michele and her Nana being here when i got home. They have taken such good care of her. When I wasnt feeling so great and would get up from the chair Makenzie would say "Poooooooor Mama". Her PawPaw drove down today and he and Nana and Aunt 'Hell' (Michele) spent the day building her a swingset and sliding board. It is supposed to be warm here this weekend--so she should have a big time playing on that. Makenzie's labs this week were good. Still waiting on the EBV level--but the rest were fine. I will let you all know as soon as I get those.

Friday, February 20, 2004 5:08 PM CST

Well hello---I am back finally. I had my surgery on Monday morning and got home yesterday morning. I wont lie and say it doesnt hurt---makes you a bit more understanding about what our kids go through. Makenzie is definetly tougher than I am. I am still taking pain meds and laying around. But hopefully in the end this will all be worth it. A special thanks goes out to all of the family and friends taking care of Makenzie while I am unable to. You guys are priceless. Thanks also for all of the well wishes and cards and flowers. I would never have survived this without all of the support. Makenzie looks good so we hope she will stay that way for a bit. Back to Pitt in 6 weeks for a follow up.

Saturday, February 14, 2004 9:14 AM CST

Hello---well Makenzie had her repeat scope yesterday and it looked okay even though we wont have official results until monday or tuesday. Her output is better and I got a call from Amy in Pittsburgh last night that said her EBV was still 110,000---but that is down from 140,000 so at least it is trending down. So my surgery is still a go. I go in at 940 on Monday morning. So everyone please pray that things go smoothly and that Makenzie does okay with me gone for a few days. Thanks to all of the friends and family that will be helping take care of her while I am away. I probably wont be posting until I get back at the end of next week. Just keep us in your thoughts. Prayers also go out to our "gifts" friends Shelle and Dan and Hannah who received her gift of life last night.

Thursday, February 12, 2004 8:33 PM CST

What a crazy day. Makenzie has had higher than usual output for 2 days now. I get a call this morning from Pitt saying to increase her FK back to where it was originally--so I did that. In the meantime I have been setting up everything for my surgery on Monday---I have to go in the morning for final tests etc---and then I get a call this afternoon that Dr Jorge wants her scoped again. We just went to Pitt last week to try and avoid this very thing. So anyway---at least my home GI is going to do it. I am going to get my tests in the morning then take her for a repeat scope--if it looks okay I will go ahead with surgery on Monday----so lets just hope it looks okay. Ill let you all know. Thanks for the continued support and prayers.

Monday, February 9, 2004 8:18 PM CST

Hi all---so sorry it has taken a while for me to update. It has been kind of crazy here. We got back from Pitt a day or so ago. Everything went okay there. Her biopsies were normal which is great. Her EBV had gotten up to 140,000 though so we are having to watch that very closely. They decreased her immunosupression--so we have to watch closely for signs of rejection. We sent another level this morning--so hopefully I will have those results back by Friday. We got to see alot of our friends when we were in Pitt. Makenzie enjoyed playing with Logan and Justin and Destiny and also getting to meet Katie and Kristen. We had a good time but are now glad to be home. Trying to get things ready for next week is kind of crazy. Makenzie is going to have alot of help here next when I am in the hospital---let sjust hope all goes well and it is only for a fwe days. I am sure she will be fine with Nana here. Please continue to keep us in prayer in the coming weeks. Ill keep everyone updated.

Sunday, February 1, 2004 9:29 PM CST

Hello--just wanted to write a quick update. Makenzie and I got to Pittsburgh this afternoon. I think I have kind of missed being here---never thought I would say that. We have seen some friends already this evening and will be going to meet some tomorrow. Makenzie has her scope Tuesday morning and clinic on Wed. We are also waiting on new EBV results. Ill let you know when I know anything....

Thursday, January 22, 2004 5:08 PM CST

Well I got a call from Pittsburgh today that Makenzie's EBV level is up to 108,000 ---yikes!! We are going to start her back on cytogam tomorrow and check another level. We will have to watch her closely. Hopefully we wont have to end up going back to Pitt and the numbers will start coming back down. Makenzie looks fine however--as good as she ever has. Lets all pray she stays that way. We are scheduled to go back to Pitt next week anyway. Ill keep everyone updated.

Monday, January 19, 2004 11:08 PM CST

Hi everyone. Just wanted to write an update. Makenzie has been doing just fine---so we wont talk about it and jinx it. She spends most of the day getting into as much trouble as she can find. The other day I ran a tub of water for a bath and came back and the tub was full of water---and all of the dirty clothes. She had piled them all in--towels, jeans...just a huge mess. Now she insists on banging on the computers--she thinks they are made just so she can watch her Teletubbie DVDs and she screams Taa Tees everytime you try to do anything. We head back to Pitt next week for her scope and then my surgery is on the 16th---so lets all just hope that goes okay. Ill let you know.

Wednesday, January 7, 2004 4:50 PM CST

Not much to add which is always a good thing. Makenzie's labs from Monday looked pretty good. She is scheduled to go back to Pitt the first week of February for her next scope and biopsy. But right now she is eating and drinking really good which is great. She has even gained a little bit of weight. Not much--but at least she has gained back all of that weight that she lost when she had the flu. I think she is getting tired of being couped up in the house again. I had to take her with me to pick up her medicine this afternoon and when i took her in she wouldnt leave. I told her I was leaving and she told me bye--i asked her if she was coming with me and she said no. We cant wait for spring to get here and flu season to be over.

Wednesday, December 31, 2003 8:22 PM CST

We just wanted to take a minute to wish everyone a Happy New Year and also to remember how far we have come this past year. So many things have happened this year. Makenzie has been given her second chance and we are making the most out of it right now. We also want to thank everyone for everything they have done for us this past year. Some did big things, some small--but without all of you we would have never made it through all of this. A special thank you again to our donor family---without you none of this would have been possible. We hope everyone has a peaceful and healthy and happy 2004.

Sunday, December 28, 2003 3:52 PM CST

Hi all--just wanted to let you know that I put a few new pictures of Makenzie on her page. She seems to be feeling okay this evening but we will see. Doing labs in the morning to double check stuff. Ill let everyone know.

Thursday, December 25, 2003 3:34 PM CST

Merry Christmas everyone. We hope everyone has had a great holiday. We are thankful that Makenzie has felt good and is enjoying her day with Nana and PawPaw. She opened way too many presents this morning and had a nice long nap this afternoon. Now she is playing with her Uncle Mike and Aunt Judy and having a ball. Thank everyone for everything they have done for us this entire year. Also please take this time to say a prayer for our donor family as this must be an especially sad day for them. They have given the most precious gift we will ever have.

Friday, December 19, 2003 8:28 AM CST

Well Makenzie's EBV level came back at over 80,000 which is way to high for her. We are planning on giving her some medicine today (Cytogam) to see if it will help and then redraw a level next week. Hoping she will feel good for Christmas and be able to visit at Nana and Papaws house. She still isnt having any visitors and is getting pretty put out with that. She likes to have people around here and gets tired of looking at me pretty quick. She has alot of new toys and stuff from her birthday though that are still keeping her busy. We hope to have a quiet couple of days until Christmas and just stay in.

Tuesday, December 16, 2003 4:53 PM CST

Hi all---just wanted to share with you all a few of Makenzies pictures from her birthday before we go back to the holiday pictures. She is feeling kind of rough again today so we hope it is just this flu bug holding on for now. Ill keep you updated---but go see her birthday cake and other pics.

Sunday, December 14, 2003 11:40 AM CST

After a bunch of tests--seems Makenzie managed to get influenza A. I had been letting her be as normal as possible--but not anymore for a while now. She is quarantined until her WBC count is up and the flu is mostly gone. They let her come home from the hospital last night mostly to just keep her away from bugs. She is feeling mostly better now, just poops out kind of quick. She is going to miss seeing her friends and going to Walmart--but they said we just have to keep her in. She doesnt have the immune system to fight this stuff right now. We have dropped her immunospression meds to help her fight this-just have to hope she doesnt have any rejection. That is about it from here. Just trying to coordinate things so that she goes out as little as possible and sees as few people as possible. Thank you to those of you helping me to do that. We appreciate it a bunch.

Thursday, December 11, 2003 7:15 PM CST

Well Makenzie decided she wasnt getting enough attention and decided to get sick today. We did everything we could to keep her home---but it was not to be. She was admitted around 6 this evening with a temp and white count of 1.5. She has a node you can feel in her neck which could be a viral response or could be trouble brewing. But please keep her in your prayers as she is feeling pretty rotten. Ill keep everyone updated.

Monday, December 8, 2003 8:30 PM CST

Well Makenzie had a wonderful birthday. She had about 35 people, friends and family, here to share it with her. Even the newspaper people came out to take pictures. It was so nice to see her enjoy her day like a normal little kid. You would never have known she has ever been sick if you could have seen her running around the house eating pizza and cake and ice cream. Everyone made it such a special day for her. Sunday we went to see Sesame Street Live. Makenzie was having a great time laughing and dancing while they were on stage---then the characters came off stage into the audience and she almost had a seizure she was so scared. The closer they got the more she shook and screamed NO NO NO. As soon as they got back on stage though she was fine and would continue to look for Elmo and Big Bird. But this happened many many times through the show--so it was emotionally draining for her---lol. She felt good though and had fun--so we couldnt ask for more. Prayers continue for baby Peyton doing well, Baby Sarah--still on the vent--and for their Mom who got sick while visiting and turns out to have a tumor on each kidney---these guys needs some help right now. Ill keep everyone updated.

Friday, December 5, 2003 9:06 PM CST

Hi all---here it is the eve of Makenzie's 2nd birthday--a day we never thought we would see. I figured it would be hectic tomorrow so I thought I would post tonight. Makenzie has been quite a pill all day. Apparently she read something about this terrible two thing and thought she needed the practice. Even though there are many times in a day when you'd like to pinch her little head off---we are always grateful just to have her. She went to the mall today and watched the dancing bears forever. It is so great to just see her feeling so good and being so rotten. Thank you to all of our friends and family that have helped us since the beginning of all of this. We would never make it without you. A special thank you and special thoughts as always about Makenzies donor family. Without them we wouldnt be here today. And a special prayer tonight if you would for my best friends little babies born last night. Peyton and Sarah---Sarah is having a bit of a rough start and is on the vent--we want to see her off of there and eating soon. It brought back so many memories of just two years ago almost exactly seeing Makenzie like that. And while Miss Sarah will be fine---we want her home soon where she belongs. Her Mama is tough---she has helped so much with Makenzie--she will get them both home soon. We will miss you guys tomorrow.

Thursday, December 4, 2003 9:59 PM CST

Well--here it continues to snow and ice. But Aunt Laurie just delivered her twins---Peyton James and Sarah Riley---we hope we get to see them tomorrow. I dont know though--they were both taken to NICU--so we may have to wait until they get out of there hopefully in just a day or two.

Thursday, December 4, 2003 5:02 PM CST

Well, here it is 2 days before Makenzies birthday and we are getting slammed with snow and ice. Most importantly for any friends reading this--Makenzies aunt Laurie i having her twins as we speak. They put her in today worried about the weather--and it was a good thing. I cant even get there to be with her which makes me very sad. But you can fight Mother Nature as we well know. Just a quick prayer that they will all be here and healthy and well come morning when we can dig out. Makenzie has been loving it though--she has loved the snow and insists on going outside. So I let her. All bundled up like a CHritmas Story. That is it for tonight. We will try and breathe a little bit now that we are back off of the highway.

Friday, November 28, 2003 11:07 AM CST

We hope everyone had a wonderful Thanksgiving. Makenzie tried very hard to get to go see her friends at the hospital. About an hour after we got to my parents house she tripped on the carpet and went flying through the air. She hit her head so hard on a corner that I was suprised she was still conscious. Within seconds a purple goose egg was right in the middle of her forehead. I put ice on it and watched her for a few hours trying to decide whether to take her to ER---but she seemed okay so we just waited. She is fine today-just still has an ugly knot on her head--but it could have been much worse. I am just glad she felt good and was able to enjoy her Thanksgiving here. Last night we took her to a local park to see Christmas lights. She thought they were cool--but more enjoyed riding in the front seat of the car for an hour as we inched through the park. She loved the steering wheel and the gear shift and all of the buttons. Now we get to plan for Makenzies big 2nd birthday next week. Just feeling so lucky that she is here and feeling good.

Thursday, November 27, 2003 8:45 AM CST

We just wanted to wish everyone a Happy Thanksgiving. Makenzie is here enjoying her Thanksgiving with Nana and Papaw so we couldnt ask for more. This has been quite a year for us and have so much to be thankful for. During our day we also are thankful to Makenzies donor family---we know this time is especially difficult for them and we hope they have some peace in their lives. Without them we wouldnt be having the day we are having. God Bless all of our family and friends that have been so good to us over the past two years. Hard to believe it has almost been that long. We would never have gotten this far without all of you. Makenzie is a very lucky girl to have so much love in her life. Happy Thanksgiving!!!!

Tuesday, November 25, 2003 11:13 PM CST

Hi everyone. Just wanted to let you all know that I added Makenzies new pictures from today on her site. She did pretty good. I have others Ill change too soon. She and Katie had a big day today seeing Santa again and going to the mall. It was fun. We are leaving tomorrow to try and spend Thanksgiving with our family in WV---lets hope she will stay well. I will post again soon--just wanted to share these pics.

Monday, November 24, 2003 9:22 PM CST

Hi everyone. Makenzie went to see Santa tonight. She thought he was really cool while we were in line. She waved and smiled to him--until I tried to sit her on his lap and she acted like I was sitting her in hot coals. We managed to get one picture. Her Christmas and birthday pictures are tomorrow---i hope she doesnt freak out for them. On another note---we found a house today. Very exciting. Actually it belongs to some of our friends that are building a new house--so it wont be ready until August or so. But the location and house should be perfect for us. Thanks for thinking of us Donna and Carl. I will post her pics tomorrow if she will smile---and ill put her santa pic on here now. Lets just hope Makenzie can stay well for the Thanksgiving holiday---we have alot to be thankful for.

Thursday, November 20, 2003 10:01 PM CST

Well we made it back to VA. Her scope looked good. Her labs looked good. They said as long as she continues to do this good that she doesnt have to come back for three months. Three months seems like forever. I hope Makenzie will cooperate and stay home for that long. She needs to get more calories in and gain some weight--but we will keep a close eye on that here. Lets just hope she will stay well through the holidays.

Monday, November 17, 2003 8:53 AM CST

Makenzie and I are back in Pittsburgh---hopefully just for a very short visit. She has a repeat scope and biopsies tomorrow and then clinic on Wednesday. If her scope is okay then we will return back to VA Thursday morning--lets hope that is how it goes so Mak can join Nana and Papaw for Turkey Day.

Thursday, November 13, 2003 9:15 PM CST

Sorry it has been a few days since I posted. Things here have been quiet for the most part. Maks belly had been kind of messed up for a couple of weeks---and I was getting bummed about it--but her GI here started her on some antibiotics and it seems to have cleared up. We both feel better. Otherwise she is just busy learning how to be a little kid. She is so very funny and keeps us in stitches. Her second birthday is rapidly approaching and so we have gone to get Elmo paraphenalia--he and the Wiggles are her favorites with a little Barney thrown in from time to time. She is supposed to go see Elmo the day after her birthday party. Say a little prayers that the kids around us arent sick---that is all she needs. Well, we are off to Pittsburgh again on Sunday, hopefully for just a few days. We are working really hard at buying a house, but she is going to have to stay well for a bit in order for that to happen. I will keep all of you updated.

Thursday, November 6, 2003 2:42 PM CST

Hi again. I just wanted to let everyone in the area know that Joy Sutton with Channel 7 news came today and did and update story on Makenzie. It should run tonight at 5pm. Thank you Joy for showing continued interest in Makenzie's story. Her life is nothing short of a miracle and we love to have everyone hear about her and spread the word about the importance of organ donation. Anyone visiting this page for the first time please take a moment if you have time and sign Makenzies guest book. Anyone wanting to make a donation to help with Makenzies transplant related expenses can send it to Makenzie Blackburn Special Needs Trust c/o Scott and Stringfellow PO Box 1436 Bluefield, WV 24701. All donations are used for Makenzies trips back and forth to Pittsburgh which happen once a month now and sometimes more often than that. We are hoping to stay home for the full month this time. We once again just want to thank everyone in the community for all of their support. Please also keep Makenzies donor family in your thoughts and prayers. Without their selfless decision to help someone else, Makenzie wouldnt be with us.

Friday, October 31, 2003 9:08 PM CST

Makenzie just got in from her trick or treating. She had a really great time playing with Katie, Laurie, Eric, Dean, Lisa, Zach and Hailey. She went as a purple butterfly. She wasnt a bit thrilled with the costume--but she did love her ball (pumpkin to collect candy in). After we got home against my better judgment I let her try some candy. Seems she loves M&Ms---a girl after my own heart Im afraid. I cant let her have a lot of them---but she sure does think her first taste of chocolate was pretty good. Thanks to everyone that included us in their evening. Now we are off to bed---for a hopefully peaceful sleep. I decided to not have the yard sale tomorrow. Try as I might I just couldnt get it all together--what a mess it is in the garage. If I get moved before we can have it I am taking it all to the dump. This is something I dont want to tackle again.

Tuesday, October 28, 2003 6:13 PM CST

Makenzie made it back to VA again today. The docs in Pittsburgh decreased her immunosupression because of her EBV--so now we have to watch for rejection. It will be a fine balance for a long time. So now we have to go back to Pittsburgh again in three weeks for another scope---but if e make it here three weeks that will be more than a record. Tomorrow we are going to start getting ready for a yard sale for Makenzie this weekend. I dread that one but it has to be done. Ill post again if she makes it a few days without needing to go in the hospital anywhere. Keep your fingers crossed.

Friday, October 24, 2003 8:42 PM CDT

Makenzie seems to be doing a lot better today. We went in to the office to see Dr Jorge today and he thinks she looks pretty good too---we decreased her antirejection meds in case it is a virus she has had. I havent heard a word about her biopsies--so I am going to assume they are okay. We will go to clinic on Monday morning---if things are okay then we will leave and go back to VA on Tuesday---lets hope so--Makenzie wants to come to VA to trick or treat---it is too cold here.

Wednesday, October 22, 2003 9:03 PM CDT

Hi all--well Makenzie and I arrived back in Pittsburgh around 8 this evening. She will go to clinic in the morning and for scope in the afternoon. If it all looks okay we will head back to VA on Friday evening or Saturday and try this all one more time. Lets hope it is a good scope.

Monday, October 20, 2003 2:34 PM CDT

Well sometimes Makenzie just cant catch a break. She had a bunch of tests done yesterday and her chest xray shows that she has pneumonia. My guess is that it is related to her having anesthesia on Friday. She is feeling somewhat better today. The docs let her come home today to be on IV antibiotics for a week and see how it goes. She doesnt feel too bad--she just gets short of breath when she plays. Lets hope these antibiotics take care of it.

Sunday, October 19, 2003 12:17 AM CDT

Makenzie decided she couldnt go another day without seeing her friends at the hospital. She just hasnt been right since we left here Friday. So she is back for a tune up. Not sure what is up--maybe just too much fluid on friday---things arent quite right. Ill let you know.

Saturday, October 18, 2003 7:22 AM CDT

Well Makenzie's port went in fine today. She is very very sore and not a bit happy about it right now. It will take a little bit of time to see if we are going to like it or not. Her labs were all off when we got there so she had to get a ton of fluid while we were there. She looks like a Michelin tire baby right now--but they let me bring her home and watch her here. We will see how she does today and decide if she needs to go back in for a tune up. Ill let you all know. We already have to go back to Pitt a week from Monday---it hasnt been a very peaceful 2 weeks home---but at least it is home.

Thursday, October 16, 2003 7:49 PM CDT

Hi all--well Makenzies fun of being lineless was short lived. She is on her way to the OR in the morning for a new one. We are going to try and get a port instead this time--that was it is under her skin and she can have some free time with no line hanging to worry about. She needs a little bit of fluid---but we could have probably done that with her gtube alone. But Pittsburgh called today and want her back on antiviral meds for her EBV--so that requires have a line of some sort so we can be at home and do it. Please keep Miss Mak in your prayers tomorrow as she goes to the OR. Hopefully she can come home tomorrow evening.

Monday, October 13, 2003 8:11 PM CDT

Hi all--Makenzie was released from the hospital again this morning and seems to be feeling pretty good. With her cast off and her line out she was able to take a real bath today without having to worry about getting things wet--she really liked that. This afternoon she was even feeling good enough to go to Walmart. I went to lay away her Christmas presents--but more importantly to let her spend her "mummey" that all of the nurses gave her. She uses it to ride the rides at walmart--and so she did that until i had to take her screaming from the store. We will draw her labs again on Wednesday and see how she is doing with no IV fluids. Her output is back down so this is a good thing. We have to go back to Pittsburgh again in two weeks---but hopefully she can stay out of the hospital for that long. We are both exhausted and here at 9pm are heading to bed and looking for a good nights sleep. I will try and catch up with all we need to do over the next few days.

Sunday, October 12, 2003 7:25 PM CDT

Hi all--so far not so bad. First they took off Makenzies cast today---said her xray shows the bone was already healed---so that is good. Her output is still up some but it isnt horrible. Not sure if she will fly without a line or not--but we are sure going to try it for a bit. We are hoping to be released from the hospital once again in the morning. It is no wonder she likes it here. All of the people here place with her and give her money everytime they see her. SHe thinks it is great here. I however am wanting to sleep in my own bed--for a week or so anyway. Ill let you all know.

Friday, October 10, 2003 9:17 PM CDT

Well this has been a landmark day of sorts. Makenzies new line infection dictated that the line be removed. So it was taken out around 6pm this evening. The landmark part being we are going to try not putting one back in. It is a huge step if we can leave it out. Her mag level was good today with no IV meds--so if it stays that way it should be okay. Makenzie hasnt been too impressed with it being gone as yet since she has been stuck 3 times already. I will keep you all updated. If it goes well we should get out of the hospital on Sunday or Monday.

Thursday, October 9, 2003 11:52 AM CDT

Well--i could cuss--but instead Ill just say that Makenzie has been back in VA for 48 hours and is now residing back in the hospital--admitted at midnight last night with a fever. Not sure what all is going on as yet--she doesnt seem to feel too bad though. Ill let you know what goes on as they happen. Pray we stay in VA for a bit.

Saturday, October 4, 2003 12:43 AM CDT

Well, we checked a magnesium level yesterday and it was already low--so it is back to the IV mag--so she will be keeping her line for a bit longer. Other than that she seems good. SHe has her head CT on Monday--as well as clinic and labs---and then we hope to go to VA on Tuesday. We are going to start packing tomorrow. Today is just going to be a lazy pajama kind of day. Makenzie is walking all over the house in her first pair of footy pajamas and just looks so cute. She walks and and is talking up a storm--tries to say everything (Id better be careful). I will let you all know what happens on Monday.

Thursday, October 2, 2003 1:00 PM CDT

We just got back from clinic--needless to say we arent going to VA today or tomorrow. Her head CT is scheduled for Monday. They are also going to do a RAST test on her to see if she is allergic to something since she had the hives and has had them a few other times. They are going to stop her IV mag and check a level tomorrow and on monday---if all of this is okay then we will go home Tuesday of next week. I am so sorry I am going to miss Aunt Lauries birthday though. Ive missed the whole pregnancy with the twins and if i dont hurry they are going to be born before I get there. That cant happen. So we will hang out here for another 5 days it seems--but hopefully that will be all. As I think that though, Makenzie seems to be getting a cold---coughing, stuffy nose. Cross your fingers that it doesnt turn into anything else.

Thursday, October 2, 2003 0:36 AM CDT

Well once again it was a busy day. Makenzie and I had to be at the hospital for her scope at 6am--she got admitted and finally went sometime after noon. She slept hard after anesthesia and didnt get back to the floor until 4 or so. Then as we were leaving at around 6 she got hives all over--we dont know from what--but she had to get Benadryl and cultures and so forth and so on. The scope apparently looked fine--the biopsies will be back tomorrow. They want to check a head CT to make sure she didnt hurt something when she fell and broke her arm--being as the throwing up started the day after all of that. We just want to get home soon. It is always one thing after another it seems---but she seems to be feeling good. She is sound asleep now. We go to clinic first thing in the morning and will see what they say then. Ill keep you all updated.

Friday, September 26, 2003 9:49 PM CDT

Hi everyone. Makenzie has been doing okay for the most part. She had an upper GI done which looked good--but she still throws up from time to time. She is going to have to go to the OR next Wednesday to have an upper and lower scope done. If those are okay we hope to head back to VA a few days after that. The ortho doctor said her arm was healing fine and that she needed to wear her cast for at least another month. She is doing much better with it now--so that should be fine. She acts like she feels fine---she had gained weight and everything looked good with her labs with her only getting IV fluids every other day---i hope they just leave her like this for a while and we will see how she does instead of making too many more changes too fast. That is about it here---we are very appreciative of everyone here in Pittsburgh, but we are ready to go home.

Monday, September 22, 2003 10:51 PM CDT

Hi everyone. All sorts of things happening here. First off, Makenzie cant crawl with her cast so she finally took to walking yesterday. Better late than never. She went back to clinic today---they are going to take her to the OR one day this week and get an upper scope on her because she has been throwing up some this past week. We started her on Reglan and will see if that helps too. But she feels great and her labs were great---so tonight we are going to try her off of fluids. This is the first night since she has been born that she has not been hooked up to an IV---kind of a milestone for her. We are going to do fluids every other day and see how she maintains and will recheck labs on Thursday. We get to spend all day tomorrow in Ortho clinic--so they fun never stops here. I have some pictures of Makenzies cast I will post after i figure out how to shrink them a bit. Check back and see them. Thank you all for your continued support---we love all of you guys.

Sunday, September 21, 2003 11:36 AM CDT

Hi everyone. We would just like to say and extra special thank you to Valley Community Church and the Omnitones for a benefit they did for Makenzie last night. The kindness that total strangers have shown me and my daughter never ceases to amaze me. I was so hoping we would be back to VA before they did this--but as Makenzie would have it, we are still in Pittsburgh. I am hoping to be back in another few weeks--and when we get there I will bring her by to meet all of these wonderful people doing special things to help her. I am just so sorry we couldnt be there. Also a special thanks to Aunt Laurie for dragging her very pregnant (with Makenzies two cousins) self in our place. She tells me it was a wonderful time. Thank you all again and we look forward to meeting you in the very near future. Makenzie goes back to clinic tomorrow and I am going to try and talk them into letting us come home again---we know we will have to come back in a month---but just a few days at home would be good. I will let you all know.

Wednesday, September 17, 2003 7:44 PM CDT

Well not to have the fun day yesterday outdone---today was quite the opposite. It had been a fine day and we were planning on going to Walmart----so Makenzie was sitting on the bed while i gave her antibiotics and then i went about 10 feet away and began to run some bath water. Now Makenzie knows how to get down off of the bed mind you so I dont worry that much---but as soon as I turned around she fell---she stood up and grabbed her IV pole think ing it was stationary I guess and hit the floor. She favored her right arm some so i watched her about an hour and she didnt cry anymore so I thought she was okay. We got in the car and when i went to get her out i unhooked her and held my arms out and she was just smiling and held her left hand out to me--the right just layed there. So I strapped her back in and headed to the ER---and low and behold she broke both bones in her forearm---she is now in a cast from her shoulder to her fingers and will be for at least 6 weeks. If it isnt one thing it is another I guess. Hopefully it will heal up just fine---she now calls her arm Boo Boo.

Tuesday, September 16, 2003 11:11 PM CDT

Hello---this is Christie's friend again. She called and asked me to post an update since she is having a hard time getting to a computer right now. Destiny is on the floor and doing good. She is having some fevers and they arent sure of the exact cause yet---but her scope today looked great--so it isnt rejection. She still has two tubes in her nose---one to send feeds through and one to keep her stomach empty. Her feeds are at 5cc/hr and hopefully they will be able to increase them soon. Her tummy just needs to kick in. Her bilirubin was up some today but still in the normal range. I havent gotten to see her yet--but i am going to take Christie a camera tomorrow so that she can take a few picture and i will get them developed. Even with the tubes---just to see her not be yellow anymore will be a wonderful sight. Please continue to keep Destiny and her mom in your prayers---it is still a long road from here.

Sunday, September 14, 2003 10:51 PM CDT

Well not to have the fun day yesterday outdone---today was quite the opposite. It had been a fine day and we were planning on going to Walmart----so Makenzie was sitting on the bed while i gave her antibiotics and then i went about 10 feet away and began to run some bath water. Now Makenzie knows how to get down off of the bed mind you so I dont worry that much---but as soon as I turned around she fell---she stood up and grabbed her IV pole think ing it was stationary I guess and hit the floor. She favored her right arm some so i watched her about an hour and she didnt cry anymore so I thought she was okay. We got in the car and when i went to get her out i unhooked her and held my arms out and she was just smiling and held her left hand out to me--the right just layed there. So I strapped her back in and headed to the ER---and low and behold she broke both bones in her forearm---she is now in a cast from her shoulder to her fingers and will be for at least 6 weeks. If it isnt one thing it is another I guess. Hopefully it will heal up just fine---she now calls her arm Boo Boo.

Saturday, September 13, 2003 5:27 PM CDT

Makenzie went to her first concert today. Someone at the hospital got us complimentary tickets to go see Barney. I thought she might be a little bit too little to enjoy it but boy was I wrong. We were in the third row and Barney was right in front of us. Makenzie oohhhed and ahhhed and clapped and danced until she was exhausted. Every time that Barney went off stage she would be waving frantically yelling BYE BYE BYE BYE---it was too cute. We took a couple of our transplant buddies with us. Caleb konked out after the first act. Makenzie made it until the end but was asleep before the car got out of the garage and didnt wake up for 3 hours. I am so glad we went. Thank you Childrens Hospital for the wonderful tickets and for lighting up Makenzies day. She has been toting a stuffed Barney around all day. Ive never even really let her watch him much---but i guess we will have to start.

Wednesday, September 10, 2003 9:15 PM CDT

Hi again--well Makenzie was released from the hospital for the umptenth time today and we are back at the hotel. She is feeling good and into everything. They decided to give this line one last try---if she gets sick again it will go for sure. Hopefully that wont happen. Otherwise she seems okay. She was scoped bright and early at 730 this morning and it looked good--the biopsy wont be back until tomorrow or friday though. I will let you know what happens. If it is okay hopefully next week we can start talking about coming home again.

Monday, September 8, 2003 10:15 PM CDT

Well the bug Makenzie grew out was the same so they are still trying to decide whether to pull the line or leave it--hopefully they will decide for sure tomorrow. SHe is feeling good again and is into everything. Today she played in the playroom for the first time and I left---I figured she would scream but when i came back about 20 minutes later she was still laughing and playing. She is growing up so quick---full of words and expression. She has quite a flare for drama--wonder where that came from. She keeps me on my toes all day. Ill let you know as soon as i know something for sure.

Friday, September 5, 2003 9:57 PM CDT

Can I say that I am sooooo glad we did not head back to VA? Makenzie woke me up at 230 this morning throwing up and burning up. I took her temp and it was 102 so we were off to the ER---there is was 104. We spent all night in the ER and got admitted to the floor at 830am. Seems she has another line infection. She just got off of antibiotics for the last one 3 days ago. So if this one comes back growing the same bug they will probably have to pull this line out and wait a few days and then place another. She is already feeling much better, but i am sure we will be stuck here for a few days anyway. Please continue to keep her in your thoughts and prayers.

Wednesday, September 3, 2003 10:25 PM CDT

Well we arent going home just yet. Makenzie went to clinic today. They said her scope from yesterday looked great but that they wanted it done again in two weeks---they said we could come home and visit until then. Well they called later and got her scope set up for Monday two weeks--then we wouldnt get enough supplies to go home with until tomorrow and then if we went home we would only be home 9 days and have to turn around and head back--that would be fine if it wasnt a 7 hour drive. So anyway, we are going to stay here until then and then hopefully go back. They did decrease her fluids and feeds to 10 hours each---so that is easier---she is only hooked up now when she is asleep---I cant tell you how much that helps. She is getting into everything. Thanks for all of the continued support. A special thank you goes out to Aunt Laurie from Makenzie--she continues to keep our house and bills in order all the while working full time--taking care of a 3 year old and pregnant with twins---you are a tough one--we love you bunches and are going to pay you back when we can---im sure there will be a baby or two to help with.

Tuesday, September 2, 2003 9:15 PM CDT

Hi there. Makenzie has been doing well. Her scope looked good today but we wont get the biopsy reports until probably Thursday I am guessing. She goes for clinic tomorrow so we will see what they think about us coming back home. I will keep you updated. Ive added a couple of pictures of Makenzie with some of her friends here.

Saturday, August 30, 2003 10:50 PM CDT

Hi again. Makenzies biopsies were good from her last scope. She is to get scoped again on Tuesday. We are hoping if that one is okay that we can come home by Friday of next week to try again and see if we can stay there a little longer this time. Keep your fingers crossed.

Tuesday, August 26, 2003 10:52 PM CDT

Makenzie had another scope today and it looked great. We wont have the full report until Thursday though. If it is okay then they are planning to scope her again next week---if that one is okay hopefully we can head back to VA again. We have her fluids back to 12 hours and pretty much she looks about like she did before this episode. Thank you all for continuing to think about her. We appreciate all of you.

Friday, August 22, 2003 10:32 PM CDT

After they figured out that Makenzie had a virus and changed her meds around she perked up pretty quick. They released her today and we are back at the hotel. Hoping in another week or two to try and head back to VA again. Thanks for all of the continued support.

Friday, August 15, 2003 8:38 PM CDT

Well, Makenzie's trip to VA was short lived. She stayed there until Thursday morning and then they flew back to Pittsburgh. At first they said no one could fly with her, so I left in my car at 830 while my mom stayed with her in PICU. About 2 hours into my trip , mom called and said they said one person could fly with them since they had to take a jet. So Mom, that doesnt even like to fly on a huge commercial flight, took off on the jet with her. I think they both had fun. They beat me by an hour and when i got there Mak was introducing her Nana to everyone. They scoped her as soon as we got here---it didnt look bad but they came back today and said she has adenovirus. A bug that is going to take her a while to get over---so she is back on tube feeds and hopefully will feel better soon. We will be in Pitt for a while again. Please keep her in your prayers.

Tuesday, August 12, 2003 7:32 PM CDT

Hi all. Makenzies fun coming home to VA trip was short lived. She is now in PICU in VA. Her EBV levels are high--but just found that she is has a positive blood culture which isnt great---but it is better than alot of things. Hopefully now we will just be able to stay here unstead of returning to PA. Keep her in your prayers--she is feeling pretty yucky.

Saturday, August 9, 2003 8:52 PM CDT

Hello---just wanted to quietly say that we are home for our first extended stay. We are starting the transition to home. We will see how she does---but she has loved being home today...seeing all of her toys and her Nana and Papaw and Aunt Laurie, Uncle Eric and Miss Katie (and the new kids on the block..babies Sponge Bob and Sandy). I will keep you all updated. We head back to Pitt in a few weeks but hopefully for a shorter stay. Please keep her in your thoughts and prayers that she stays well.

Saturday, July 26, 2003 11:22 PM CDT

Hello to all of you. I am writing today because there are probably some of you visiting Makenzie's page for the first time because of the article in the Roanoke Times. Thank you to everyone there for the support--especially to Shawna and Stephanie that came to Pittsburgh to see us and what our life is like. Makenzie is doing well for the most part. She received her (intestinal) transplant 4-29-03. God Bless the family that made that very hard decision to donate their childs organs. It has given Makenzie a new chance at life. She is now eating on her own and no longer in need of the TPN that kept her alive--but was also killing her at the same time. She still needs IV fluids 12 hours every day and will for a while--at least a year or two--but we can manage that. She has to go in for weekly visits and scopes every other---she is on a ton of meds but she feels good and is out playing every day in a park here. We are so looking forward to coming home. We are hoping in a few weeks to get to come home for another visit. We have been home once since April and that was for 4 days on the 4th of July. We are hoping this time to make it a week or two. Makenzie will still have to make frequent visits here to Pittsburgh--but that is okay. We also would like to thank everyone that has helped us out during this very difficult time. You have probably read about some of them----but one place in particular Id like to mention again. It is Jesica's Hope Chest---check out there web page at 4JHC.org . This is a wonderful organization that helps needy families who have to travel away from home to get medical care. Its founder Mack Mahoney and his family have been so supportive of us--we hope to meet them all in person soon. If every anyone is looking for a place to put their donated money to good use--this is the place to learn about. They are helping so many kids with what they do---please take few minutes to look at their site and learn more about everything they do. There is also a little web page on there about Makenzie under the picture gallery. Thank you all for taking the time out to read about Makenzie and also to learn more about the importance of organ donation. It is the only thing that has saved Makenzie's life. Please feel free to check back on Makenzie's page and follow up on her life. If you have a few minutes take the time and sign her guestbook. Thank you all again.

Wednesday, July 23, 2003 8:39 PM CDT

Hi again. Makenzie had clinic today. Her weight was still holding so she can stay off of tube feeds for now. They are going to change some of her meds around to see if her output will slow down some. She gets scoped on Friday. They said if that one was okay then they would scope her again in 2 weeks and if that one was okay we could come back home for another visit---maybe a bit longer this time. Keep your fingers crossed and continue prayers for her. Thank you all.

Tuesday, July 22, 2003 2:10 PM CDT

Hi again. Makenzie seems to be doing okay. Her output is up some--she gets scoped again on Friday so we will see what it shows. She feels good anyway. She is all over the hotel playing and to see her you would never know she has been sick. I also wanted to let you all know that the newspaper article about Makenzie is supposed to be in this Sundays paper--so keep an eye out for it. Back to clinic tomorrow--Ill let you all know what happens there.

Wednesday, July 16, 2003 2:12 PM CDT

Hi again---Makenzie just got back from another clinic visit--her scope from Friday was good so they will cut back her prednisone. Most importantly though they have stopped her tube feeds as she is eating enough on her to get adequate nutrition. That is amazing. She is still on IV hydration for half the day--but that will probably last for a year or more. She will get scoped again in two weeks and see how things are. Also--there is a foundation that has been helping with Makenzies expenses while she is here---the founder of which is Mr Mack Mahoney--some of you may remember when seeing the story about Jesica Santillian--the young girl that received the wrong heart at Duke---anyway--he has added Makenzie to his website---go see it at www.4jhc.org and click on Visit Our Picture Gallery. Ill keep everyone updated.

Monday, July 7, 2003 10:00 PM CDT

Hi again. Makenzie's clinic visit went well today. They took her off of her lipids and decreased her tube feeds to 8 hours and will see if she will eat enough to get rid of them soon. She will go for a scope on Friday to see if her rejection episode is under control. If it is hopefully they will take her back off of the steroids because she can be quite the bear on them. We will see. Her new pictures are added on here now--go see them if you can. Please continue the prayers and hopefully we will get back to VA soon.

Sunday, July 6, 2003 6:24 PM CDT

Hi again. We just returned from our whirlwind visit to VA. It was so great to see so many people. Im so sorry we didnt get to see everyone---it is just so awesome that so many people care about Makenzie and want to see her. With any luck we will be out of here in a month or two and I promise to get to see the rest of you as soon as we get home. Keep your fingers crossed and we will see all of you again very soon. Ill post new pictures later this evening.

Thursday, July 3, 2003 8:24 AM CDT

Hi all--well we made it back to Roanoke last night---it is going to be a short trip but itwill be great to see everyone. Her last scope was good again so we will wait a week and do another. Hope to see all of my VA friends while we are here.

Friday, June 27, 2003 11:00 PM CDT

Hi again--well we didnt get the news we had hoped for today. Her biopsy today still shows rejection so she is going to be here for a while yet. They think it is mild--but she is going to have to get higher doses of steroids to try and kick it. We have been receiving several packages in the mail and are thankful---from cards and money to her brand new princess pillow that she is asleep on now (thanks Becky)---hopefully things will improve by Monday---Ill keep everyone updated.

Wednesday, June 25, 2003 9:22 PM CDT

Hi again---we knew not to hold our breath about going back to VA for a week. We were out and about today and got a call that Makenzie's biopsy from Tuesday showed mild rejection. So anyway, we are incarcerated in the hospital while she gets steroids and whatnot. Ill keep everyone updated.

Monday, June 23, 2003 11:27 AM CDT

Here is the new update. Makenzie just got back from clinic. They have decreased her tube feeding down to 12 hours and her IV fluids to 12 hours. If her scope looks okay and she will drink a little bit, then Dr Jorge said we can go home for a week or so. We are so excited but try not to get our hopes up to high--anything can still happen. Keep your fingers crossed for us.

Wednesday, June 18, 2003 5:08 PM CDT

Well they didn't make us stay today which is nice. They just made Makenzie come in for the first doses of her medicine and will let me do the rest at home. It is so much nicer just to be able to sleep in our own bed. I asked about coming to VA for the 4th of July today and got a maybe--so we will see--Ill let you all know.

Wednesday, June 18, 2003 7:52 AM CDT

Hi all--well we are off to the hospital for a few days. Makenzie's EBV (a virus) level came back high so she has to go in to start treatment. She feels fine so hopefully it wont be for me than a day or two and then I can do the rest from here. Ill keep you all updated.

Tuesday, June 17, 2003 8:09 AM CDT

Hi again--just wanted to write an update. Things here continue to go well. Makenzie is now 6 weeks out of surgery. She is eating some---not enough yet---so is still on tube feedings--but that is something we expected. She feels good and is crawling all over the place. I can barely keep up with her. We are getting a little stir crazy in the hotel and look forward to when we can come home again. I am hoping Dr. Jorge will let us come home for a few days over the 4th of July if she is feeling okay. I will let you all know. Keep you fingers crossed for us.

Tuesday, June 10, 2003 6:48 PM CDT

Hello. Makenzie continues to do well. We went to clinic yesterday and we are going to go up on her feeds. She continues to yell and scream if you try to make her eat baby food in her high chair---but she can be bribed. If you put her in her stroller and walk up and down the corridors---she will eat to keep strolling. So needless to say we do alot of laps. She went for her scope today and it looked fine---we wont get biopsy results until Thursday I am sure. Two reporters from The Roanoke Times have been here for 2 days doing a story about her. Ill let you know when it comes out--they have been great. We hope it helps spread the word about Makenzie's battle and also helps increase awareness about the need for organ donation.

Saturday, June 7, 2003 8:37 PM CDT

Hello again. Things here are going well. Makenzie is enjoying her new found freedom and being out of the hospital. We spent yesterday at the zoo all day and then went to dinner. Today we just walked downtown some and got her a Pitt outfit---im sure the rest of her family will love that. So far so good. She is eating even though it takes some coaxing. She still hasnt gained any weight---but she goes to clinic on Monday and we will see what changes need to be made. Overall she is doing really well. Thank you all for keeping up with her. We also received several donations this week--we would like to thank those people. I will be getting thank you notes out very soon. Everything is so appreciated.

Wednesday, June 4, 2003 4:16 PM CDT

Hello all--I just wanted to write and let you all know that Makenzie was released from the hospital today. We are back at the hotel and so far so good. She is crawling all over the place and playing with her new friend Markelle. She feels good. We are trying to be realistic as most of these kids end up back in many many times. I will keep you all updated and enjoy our time here while it lasts. Thanks again for all of the cards and calls--we appreciate them all.

Tuesday, June 3, 2003 8:35 AM CDT

Hi---just wanted to updated. Makenzie is doing well. Her feeds arent quite high enough--but she is getting there slowly. We are hoping to be discharged to the hotel tomorrow for a while if she will behave. Michele has been here visiting for two weeks--but she had to go back to Montana yesterday which made us all very sad. We are hoping she can come back soon. We are hoping everything stays quiet all day today and if we get to leave I will let you know. Thanks for all of the continued support.

Tuesday, May 27, 2003 5:30 PM CDT

Hi all---first of all I added Makenzie's new pics to her web page----they are kind of graphic right after surgery--so be sure you want to see them. Overall she is okay. She now has C-diff--so hopefully Flagyl will help and maybe her output will slow down. She had to get an IV today for FK since she is putting out so much she isnt really absorbing it well. Other than that--her feeds are up to 34 cc/hr--and hopefully we will go higher soon. She has fevers on and off--but hopefully that is just the C-diff. Her scope today looked good--but the biopsy wont be back until tomorrow. We will keep you updated. Please continue to keep her in your thoughts. We miss all of our friends in Roanoke---maybe we will make a trip home before long.

Saturday, May 24, 2003 9:07 AM CDT

Hi again. Makenzie's scope yesterday looked good. She is eating again and her tube feeds are going now at 24cc/hr working for a goal of 40. She is feeling okay other than a cold that all of us are sharing now. The worst part for her is that means she cant go riding in her stroller which is the high part of her day. But as soon as she quits coughing she can get back at it. Thank you all for all of your continued support.

Thursday, May 22, 2003 12:45 AM CDT

Hi all. Makenzie seems to be doing a bit better today. They are stopping her OKT3 today and she will go for another scope and biopsy tomorrow to see if the rejection is better. They started to let her eat again today so she has had her bowl of noodles with ranch dressing and loved it this morning. Unfortunately she is now getting the same cold that I have. Hopefully it will pass quickly. She will go back off of TPN today and her feeds are at 14cc/hr. Hopefully we will be able to increase it as the days go by. Lets all keep out fingers crossed.

Tuesday, May 20, 2003 7:11 AM CDT

Hi all. Makenzie is doing a little bit better. They moved her back to the floor. They did a scope and biopsy yesterday and they say the rejection is looking better. They are going to leave her on OKT3 for a few more days and re-scope her either on Wednesday or Thursday. She still isnt having good output yet--but we are hoping it picks up soon. Please continue the good thoughts for her.

Friday, May 16, 2003 10:05 PM CDT

Hi all--just a quick update. Makenzie has had a bad couple of days. Her bowel has pretty much shut down---she is in acute, severe rejection and is back in PICU starting on OKT3--a nasty nasty drug used to treat severe rejection. Please keep her in your prayers.

Saturday, May 10, 2003 6:30 PM CDT

Hi again. Makenzie has been having a pretty good day. Her stomach finally decided to kick back in and so she started eating today for the first time since transplant. She has spent the day eating slices of cheese and cucmbers with ranch dressing---suprisingly though she hasnt really wanted any diet coke. She has also decided that her medicines dont taste good anymore since she has gotten real food so that is becoming an issue with her. Her incision is looking a little poor in spots--but we will have to wait and see if that heals with no major infection. They tell me it will---i say it wont---i hope I am wrong. Overall though she is doing pretty good. A loooong way to go still, but we will take it day by day and issue by issue. Thank all of you for checking in on us and for the support.

Wednesday, May 7, 2003 1:27 PM CDT

Hi again---I just wanted to post an update on Makenzie. She got out of the ICU 2 days ago and is now on the floor. She had a rough couple of days trying to get her fluids straight but is now doing better. She is going to have her ups and down we know--but overall she is doing remarkable well. Her stomach isnt working quite right as yet--but we hope that it will straighten up soon. She is eating clear liquids now and enjoying her jello, popsicles, and gingerale. It is so odd to think she can drink whatever she wants now. Thank you all again for all of the continued prayers and support. Makenzie still has a long road ahead of her we know. We are just so grateful that she has been given this opportunity.

Wednesday, April 30, 2003 3:50 PM CDT

Hello everyone, this is Makenzie's Aunt Laurie. For those of you who don't yet know the wonderful news--Makenzie received her gift of life yesterday, April 29, 2003. She is currently in the Pediatric ICU at Children's Hospital in Pittsburgh. Makenzie came through the eight hour surgery without any complications and is doing remarkably well. We look for her to come off of the respirator as early as this evening. All of the physicians are pleased with the progress she is so quickly making. Makenzie and her mommy, as well as the rest of the family, extend sincere gratitude for all of the prayers that have carried this special angel to where we are today. Please continue to pray for her recovery. Also, please take a few moments to remember in prayer the parents and family of the child from whom Makenzie received her organ donation. God bless them and all the people who in the wake of tragedy can make the decison to give the gift of life to others.


Hi all--today is May 2nd and I just wanted to write and let you all know that Makenzie is doing well. She was taken off of the breathing machine yesterday and did fine. If things continue to go well she will get out of the PICU tomorrow and go to the floor. Please continue to pray for her quick recovery. Thank you all.

Sunday, April 27, 2003 7:09 AM CDT

Hi everyone. This is a picture taken of Makenzie on Easter---she looked so pretty---not that I am biased. Things here are continuing to go okay. She is all over the house and hard to keep up with. But she is having fun. Her auction is coming up next weekend. Everyone has worked so hard. We thank everyone for that. There are a few other things planned for her--bake sales, yard sales, and a few other fun things. Ill post each when we set dates. For now we just try not to plan to far ahead-actually we try not to plan anything, as anyone who knows us can tell you that as soon as we do things change. Today we are just going to enjoy a quiet Sunday. She is still sleeping soundly on her "princess" pillow, but that too changes in an instant---she opens her eyes and she is off. So we are off for another days adventure and see what she learns today. Will post again soon.

Monday, April 21, 2003 10:24 PM CDT

Hello again. All is well on our homefront right now. We dont like to speak of good things too loudly as it usually changes quickly, but Makenzie looks pretty good right now. Her color is as good as it has been in months. She had to spend all day today in the hospital getting blood---but that is a fairly common thing for her. We are all gearing up for her next auction that will be week after next. We are all looking forward to it even though it has been a bit stressful pulling it all together. I cant say thanks enough to my Mom and to Rhonda and Judy (and a bunch of others I am sure) that have worked so hard to get things ready for this fundraiser. I will let you all know how it goes after it is done. I hope some of you can make it there---it should be fun. If you need any information just write me. Thank you all again. Please continue to keep Makenzie in your thoughts and prayers that she will stay well until she is called.

Sunday, April 6, 2003 7:30 AM CDT

Hello again. It is early morning on Sunday and Baby Mak is still curled up here beside me sleeping. She was out partying late last night. There was a benefit in Salem at Howlers for her last night. I cant say thank you enough for all everyone did for her. The owners at Howlers let us use their place, Terry Foss came and played for free, local businesses donated tons of items, and my friends put the whole thing together--taking their own time and giving it to us. We raised over $3000 for Makenzie's trust fund which is awesome. Everyone here is doing so much for us---it is incredible. Makenzie is going to get her chance soon, and she would never have made it this far without the help of all of these people. We cant say thank you enough to all of you. One of these days when you can see Makenzie up running in the house not hooked up to all of her equipment, smiling and playing, you will all see the friuts of your labor. We are all looking forward to that day. Thanks again.

Friday, April 4, 2003 10:37 PM CST

Hi again. It has been a crazy week. Ill never fit it all on here. But Makenzie and I and my best friend and her daughter went to Pitt for Makenzie's check up--so we drove to Lauries parents house which is about 2 hours from Pitt---we got there at 4pm, had dinner and at 6 found that Makenzie's line was broken. So we have to pack back up and go on to Pitt. The one guy they sent didnt know what he was doing and contaminated it---and finally we found a nurse that fixed it---but she ended up getting admitted and spending the night until it started working properly again. So the next day she had her visit with the doctors. Everyone is pleased with how she looks--so we pack back up and head back to Lauries parents house in WV---we get there that evening and at 10pm we get a call back from Pittsburgh that organs have become available and to get back there. So we repacked it all and started back when they called again and said that the organs were damaged and couldnt be used. It was disappointing but I know that it will happen when it is supposed to. So since everything was packed and it was midnight--we left and came back to VA---but we couldnt make it quite that far and ended up staying in a hotel and having to unpack it again anyway. So that was our crazy week. Lauries parents call Makenzie "whirlwind" now---it suits her. She is completely oblivious to it all though. She just smiles and laughs and everyone running around frantically. Keep her in your prayers---this could all happen any day now. There is a big benefit concert and auction for her tomorrow at Howlers in Salem---it should be fun---ill write and let you all know how it goes.

Sunday, March 30, 2003 8:39 AM CST

New pictures!!! New Pictures!!!! New pictures!!! Check them out. Hi all, not much happening here. Makenzie is feeling mostly better--enough so that I took her for her Easter pictures yesterday, and to see the bunny and ride the train. We are off to Pittsburgh again next week. Her doctor here, along with everyone else, is getting worried about her liver being so big and getting harder. So, we will see what happens up there. But for now, she feels pretty good and looks okay---so we will just be happy with that for now. It is March 30th and we woke up to 5 inches of snow this morning--testerday when we were out I took Makenzie out in shorts as it was 70 degrees. Weird weather. Thanks for keeping up with Makenzie and I. Sign her book if you have time.

Thursday, March 27, 2003 7:15 PM CST

Hi again---well Makenzie has perked up some and hopefully we might get to go home tomorrow. She certainly isnt completely well, but certainly much better. We will go home on 2 weeks of IV antibiotics which not much rest for a while. Laurie and Katie and Makenzie and I are still going to try and go to Pitt next week for her check up. It is a long trip, but having my best friend go with us makes it almost a pleasurable experience. I dont know what Id do without my friends. They do so much for us. Just yesterday a bunch got together to help deliver pizzas for a fund raiser---it raised another $1200 for Makenzies trust fund. I hope they all know that it isnt lost on me that they are all doing this on their own time--time spent away from their own families to help us out. You guys are awesome and we love you for it. I will go now--hopefully I will write you all tomorrow again from home.

Wednesday, March 26, 2003 9:38 AM CST

Hello all---well Makenzie is currently now residing in the PICU again. She spiked a temp of 104 and has been here ever since---so far no bugs have grown---but I will keep everyone updated. Keep her in your thoughts---she has been one sick baby girl.

Monday, March 24, 2003 9:07 AM CST

Hello, there may be some people visiting Makenzie's page for the first time so I just wanted to say welcome to everyone. Makenzie is a very special little girl, so please take a few minutes to read her past journal entries and you can learn more about her and what is wrong with her. You can also see pictures of her and hopefully there will be new ones on Saturday if she will cooperate. Today I wanted to share with you the story of our weekend. There is a little church in Princeton,WV where my parents live that called and wanted to do a gospel sing for Makenzie. Now, keep in mind they didnt know us at all and read about her in the paper. So I drove Makenzie in on Saturday and went to the sing. It was a little church with about 75 members I would guess. They had 2 groups of people agree to come out and sing for her. Well, about 60 people showed up and they were the sweetest people I have ever met. They brought Makenzie a bunny to sit with her and they sang their songs. One little man that got up and sang was 95 years old, as was one of the ladies that came out on a Saturday night for this. Makenzie thought it was great---she sat on everyones lap and would then stretch her arms out to the next person. She hugged and kissed and just passed herself up and down the pews. I dont think she even missed me until she got sleepy. Anyway, about halfway through these people took up an offering for her and gave her $1200 for her trust fund. It was awesome. Then they said they werent finished--that they were also doing a car wash for her next month. In this crazy time in our world it so awesome to know that this kindness still exists. Then there is another little church in Cowan, WV that heard about her through my Aunt's sister. It is also a small church. They read her article Sunday morning and also sent her trust fund $500. What wonderful people there still are out there. We so appreciate all you all are doing. Makenzie seems to be feeling okay. We will get her new bloodwork this afternoon and see how it is. We are back to Pittsburgh next week for a checkup---I will let you all know how that goes. Many thanks to you all.

Monday, March 10, 2003 8:30 PM CST

Hi again---not much happening on the medical homefront. Her numbers are about the same. She saw her pediatrician today and i think he was suprised at how large her liver has gotten. We will continue to watch how things go. On other fronts things are happening all around us. We have her benefit concert with Terry Foss singing set for April 5th at Howlers in Salem (the old Top Rail). We hope many of you can make it. Her benefit auction in Princeton will be May 3rd. There is a benefit gospel singing in Princeton March 22. Several other things are in the works--thank you all so much for all of your hard work. I always like to try and add parts of some letters we receive. Here is something that was recently written to us from a friend in Montana----

"How are you two girls doing? Makenzie girl, you are in the news everywhere! I hope people are listening to your story and can find the way to becoming donors so sweet girls like you can lead a long happy life. Your pictures make me want to give you a big hug just to see the sweet smile that you have. I watch other children playing when I am out about, and wish that life for you.
And Cindy girl, you are too much. You have dedicated your life and time to this little girl and are admired by so many people.
Everytime I go to Makenzies web page, I get tears just seeing how many people are with you in this journey. You must spend most of your "extra" time educating yourself on financial matters as well as Makenzies disease. Do you have time to take care of yourself. I wish I was nearby to help you have some time just to think and care for Cindy."

I hope you all know how much your kind words mean to us both. We love you all for everything you are doing for us. We will write again soon.

Saturday, March 1, 2003 10:27 PM CST

Hi everyone--not much happening on the medical front which is always a good thing. Maks numbers remain the same. We will take that with a smile. So much seems to be happening all around us right now. First I have to say thank you to a Mr Edlich whom we have still never met personally. He took Makenzie's story and ran with it--and he is saving us in many ways---thank you for your help. I hope one day you can meet Miss Mak. Secondly, there are friends everywhere doing stuff. People donating items for Makenzies upcoming auction---there will be some good stuff there. Blankets made by different people, local businesses donating services, just tons of stuff. Then there is a group planning a large bake sale/yard sale to be done at a local Walmart---that should be fun. Terry Foss is a local singer here that we used to go listen to all of the time in our full fledged party days---he is going to do a benefit show for her trust fund---just so much going on. We cant thank everyone enough. As most of you know I wont be working at Carilion much anymore---but know I am always there in spirit. I am going to miss hanging out with you guys more than you know---you were my sanity some of the time--and that is scary i know. We will go for now---i will post on here as soon as we have definite dates for all of the upcoming activites. We hope to see alot of you there---take care---we love all of you---Cindy and Makenzie

Monday, February 24, 2003 9:09 PM CST

Again I would like to say thank you to all of the people we have heard from since the article in the Bluefield newspaper. Some of them new friends that havent even met Makenzie yet but that have been so generous, and some old friends that i grew up with but havent seen in probably 15 years or more. It has been so nice talking to all of you. I also wanted to let those of you in the Bluefield/ Princeton area know that there will be a charity auction for Makenzie sometime in late April or May---I will let all of you know after a date is set. If any of you know anyone that might be able to donate things for the auction let us know. As for Makenzies health right now, she is about the same--which is fine by me. Same around here means no worse. I will get her new labs back tomorrow sometime. Thank you all again. Also here I would like to include a letter to the editor written about Makenzie and sent to papers all over----talk to all of you soon---

Letter to the Editor


We have all read the tragic story about Jesica Santillan. But who has heard the story of a little girl named Makenzie? She is 1 year old, sweet, precious, and very sick. She has Near Total Hirschsprung's disease, and she is unable to process food. She has waited for six months to get the small intestine transplant she needs to live. If she does not find a donor in the next few months she will likely also require a liver transplant, as her current source of nutrition is damaging her liver. If she does not find a donor in the next year, she will likely die. Jesica's story is unthinkable, unimaginable, and horrendous. The only thing that could make her story more devastating is if the media's coverage results in fewer donors that could save the lives of other children, like Makenzie. If the media provided the same coverage on the success stories of the hundreds of children who are alive today because of their transplants, or the tragic stories of the children who are anxiously awaiting life-sustaining organs, perhaps there would be more donor awareness. This is an agonizing situation for everyone involved, and my heart goes out to Jesica's family- but let's not let this unforgivable error make us forget the benefits of the donor program, or the families who are still awaiting organs to save their children.

Saturday, February 15, 2003 12:21 AM CST

Hi again---first I would like to say thank you to all of the people we have heard from this past week since Makenzies article was printed in the Bluefield paper. Makenzie has received several gifts and donations from this. It means so much to us. I am saving all of the cards and letters that she has received for her and making a book of them so hopefully she can see it one day. I will share some of these letters on here the next time I post. As for Makenzies health she is about the same. Her color is a bit off--but not too bad considering she has been back on antibiotics for two weeks. They are done now--so we will wait and see if it gets better. Our financial situation has been causing increased stress levels around here---but i try to keep them away from her. She doesnt need that either. So we continue to get by right now. We have some ideas for fund raisers that hopefully some of our new friends will be able to help us with when the weather gets a little better. My best friend Laurie and her daughter went out with us yesterday to try and have a quite peaceful fun day for a change and a break. I was going to try and get Makenzies picture made to mail out to all of you that have sent donations in your thank you notes (they will be coming). But my usual camera hound wasnt quite in the mood yesterday so I made her best buddy Katie join her in the picture---the day pretty much went downhill from here---ha ha. Enjoy the new pictures. Thank all of you so much for everything you are doing. Ill keep everyone updated and Ill post again soon.

Monday, February 10, 2003 8:35 AM CST

Hello to all of you that are joining us for the first time after reading the article in the Bluefield paper. We would like to thank BK Necessary for doing such a great job. Makenzie is very speical to us and we are doing all we can to share her story with as many people as we can. Not only because of our needs but to get the importance of organ donation out there in the open. It isnt something that any of us want to think about---but unfortunately it is something that rules our lives around here. We try not to let it consume us---we just go through each day and get as much out of it as we can. It isnt hard--Makenzie is a joy. Please come back and visit her site often. We keep everything that is going on in her life here. New pictures are always put here when we get them as well. If you have a few minutes please sign her guestbook. Thank you for taking the time to read about my sweet little girl.

Thursday, February 6, 2003 7:14 PM CST

Hi everyone--Makenzie continues to do okay right now. She is still on IV antibiotics for another 8 days---but other than that she is back to her old self. Her eyes are a bit yellow again, but I dont know what her actual numbers were exactly. Ill find those out tomorrow. At work today I received a bouquet of yellow roses (my favorite by the way) with a sweet card that said "I hope you and your daughter are doing well----Terry". I thought that was so sweet---problem is that I dont know who Terry is. I called the flower shop and all they would tell me is that this person was from NC. If anyone has any ideas please let me know. Thank you anyway---they are beautiful. Makenzie says thank you too. Let me know who you are.

Wednesday, January 29, 2003 at 03:59 PM (CST)

Well I guess there are some perks to being a nurse and to working with the docs taking care of Makenzie. The hospital was kind of full and they needed beds--so we asked to come home. Usually they wouldnt let her come home so soon---but they are doing us a favor. She is on 2 diferent IV antibiotics on top of her usual mess--so there wont be much rest around here. But it is still better than the hospital. She isnt quite herself---but hopefully she will perk up again soon. She is already yellow again--she looked so good for about 3 weeks---hopefully we will get back there. While we were in some (hot) guys from the Roanoke Express Hockey Team came by to visit--she just hammed it up as usual. We are going to see about them helping us do a fund raiser of some sort to help---thanks guys!!! Today the doctors in CHicago have also called again. They are getting the financial side set up for possibly me to be Makenzies donor. It is all pretty new---but one of the kids from our group had it done last week--and thus far Mom and Carter are doing well. That is so incredible. I am not quite ready to go yet---but will decide in the next few months---Id like her to be a little bigger and older. Ill keep you all updated. Thanks for checking on us at the hospital---and you guys from work--you are the BOMB!!! This laptop will keep me sane I think---it was an awesome gift---i love you guys---sorry I shorted you at work once again. You guys are the best!!!

Tuesday, January 28, 2003 at 01:17 PM (CST)

Hi everyone. Well, Makenzie had been doing pretty good. I was just bragging on her yesterday that it had been over 3 months since she had been sick. Well, I guess she heard me. This morning I went to work and got a call 2 hours later that she had a fever of 103---so we holed up here in Club Med for the week at least. We have spent the morning getting cultures of every kind and starting antibiotics. Hopefully she will perk up soon. Her eyes are aready getting yellow again just as I sit here---so I am sure this will be another hit to her liver. Ill keep you all updated.

Wednesday, January 15, 2003 at 11:09 AM (CST)

Hello to all of you that are joining us after seeing Makenzies story on the news (thanks Joy for coming). I hope you were all able to see what a happy, sweet little girl Makenzie is even though she has alot of challenges ahead. We wanted to get her story out there to increase organ donation awareness and also to see about finding some help out in the community here. I am a single mom to Makenzie--so you can imagine that puts some extra burden on us already. I will include here the address to her trust fund--- Makenzie Blackburn Special Needs Trust , c/o Scott and Stringfellow, PO Box 1436, Bluefield WV 24701--we did it in WV because that is where our family lives and while we are in Pittsburgh they can take care of it for us. We will have to live in Pittsburgh for at least 6 months following transplant because of the high rejection rate. I will also include our phone number---540-989-0897. If anyone out there has any ideas to help with for fund raising please feel free to call us. One of our main problems right now is housing--we have been everywhere looking for help---even to Habitat for Humanity--but they can help because I cant put in the physical man hours needed because there is no one to take care of Makenzie while i do it. She has to be in the care of a nurse--and with the shortage there is only a nurse available a couple of days a week--so when she is here I go to work as a nurse--but that is another story entirely why I cant just be her nurse since I am the rest of the time anyway. They call it a conflict of interest. So instead we struggle through. So, if you have ideas for us or just want to know more about Makenzie feel free to call me or you can email me at RN4maknme@aol.com. She is such a sweet little girl--and I am doing my best to make her life as normal as possible. I will always update this site and let everyone know how she is doing medically and if anything else is happening with her. Her labs this week were actually better for the first time in a long time--so we are thrilled with that. I also keep new pictures of her--so check back from time to time. If you have a minute please sign her guestbook. We are thankful that you were interested enough to take the time to look at her website. You can also read more about her and other kids like her on www.giftsfromheaven.org under the childrens scrapbook. Her story is there and several of the kids that have already had this type of transplant are there as well. Thank you again. I hope to hear from alot of you.

Friday, January 10, 2003 at 11:38 PM (CST)

Hello---we are back from another trip to Pittsburgh. My best friend and her daughter went with us so we didnt have to go alone. Overall they were still pleased with how Makenzie looks. Her numbers are a bit concerning but we will just have to watch them for a while. They didnt feel like she needed another biopsy right now which is good. We just continue to wait for a call for transplant. Channel 7 News here in Roanoke is coming to do a news story about Makenzie on Wednesday. We are hoping to continue to spread the word about donation and let everyone see what a joy Makenzie is---even with all of her troubles. She continues to talk---saying Ma Ma---Na Na---bye bye---and a few other things. I thought she knew what they all meant---but when she started with Da Da this week I guess it is just babble---ha ha. Maybe she is trying to say something more useful--we just havent figured it out yet. We will sign in again later in the week. Thanks for checking in on her!!!

Thursday, December 26, 2002 at 03:14 PM (CST)

Hello to those of you that are joining us for the first time after seeing Makenzies article in the newspaper. We are so glad you could make the time to read about my little angel. There are previous entries you can read that tell more about Makenzie. We have just returned from a Christmas visit to WV---it is very nice and great to do something "normal" every once in a while--as normal as it can be toting IV poles and bags and pumps to Grannys house. But it was fun nonetheless. We hope you are come back to visit Makenzies site often. I keep new pictures of her here and update whatever is happening medically. Thank you for any support you able to lend. Please sign her guestbook if you have time!!!!

Friday, December 20, 2002 at 07:41 PM (CST)

Hi everyone --- just wanted to write an update. Makenzie is about the same. Her labs were still close to the same--but once again that is better than going the other way. She has been terribly fussy, but I guess she is entitled every once in a while. We met someone today that is going to try and help us do some fund raising for her. We so hope that works out--we have alot to do and never know how much time to do it in. It all gets kind of stressful--but the kindness everyone shows us helps so much. I just thought Id share some of that with you all. I work with some of the best people you can imagine. I cant say enough about them--they have become our family over the past year. So many of them do so much--but i just thought Id share a card that we got yesterday. This lady sent us a donation in place of putting things in her grandchildrens stocking---instead she is placing a picture of Makenzie and a story about her in there to begin teaching them about the spirit of giving. As I go this time I just wanted to share with you what she wrote in her card---it was so very sweet----she wrote "This is to two of my heros. To a little girl who has had so much to deal with, to a Mom, who on a daily basis, reaches for more strength to continue along this path. We dont know what will happen, but I do know that my life has been touched in a very special way when I see Makenzie's smile and her Mom just glowing with love. May you both have the strength to continue this journey. My prayers, hopes and dreams will always be there to lean on if need be---with love"----I just thought that was so cool---(I hope you dont mind me sharing)---Merry Christmas to all of you---we will post again soon.

Tuesday, December 10, 2002 at 06:30 PM (CST)

Makenzies labs today came back about the same. We were hoping for some improvment--but so far there hasnt been any. Her doctors in Pittsburgh wrote today and said they want to do another liver biopsy when we are there in a few weeks. They too are concerned that her liver is showing more damage. Please keep her in your thoughts and prayers. I will keep you all updated as to what happens.

Friday, December 06, 2002 at 12:32 AM (CST)

Today is Sweet Baby Makenzies very first birthday. Who knew a year ago we would have gotten as far as we have. We have had quite a year---filled with some not so great things like hospitals and surgeries and infections--but we have also had a wonderful year full of love and laughter. I wouldnt have traded this last year with you for anything in the world. Your courage inspires me every day and keep me going. You are such a joy little one. Thank every one for this last year---you have taught us that it is not only blood that binds people together. Makenzie has taught all of us that. Here is hoping and praying I am sitting here a year from now writing to all of you again.

Wednesday, December 04, 2002 at 07:22 AM (CST)

Hi everyone---well Makenzies liver numbers are about the same this week---and although they are high--just being steady is enough for us. She has had a very good week--has spent most every day laughing and smiling and feeling well enough to run around with me. That is when we have so much fun. She loves to visit with people and has never met a stranger. She loves when people that dont even know her come up and talk to her--a smile just lights up her face and she wrinkles her nose in the funniest expression. Her birthday is rapidly appraoching--we just hope she will stay well through this. I want to thank everyone for checking out her page--and especially for signing the guestbook--each entry makes me smile--knowing my little girl is touching so many people. We arent garaunteed a long life for her (in reality i dont guess anyone is)---but she has brought so many people together in the spirit of love and compassion that it is hard to imagine. She is an amazing person---i am so proud of her!!!!

Thursday, November 28, 2002 at 07:30 PM (CST)

Hello everyone---here on this Thanksgiving Day--i would just like to say thank you to everyone for everything they have done for us. Even in our time of trouble we still have alot to be thankful for. I am thankful for my friends who are incredible--for my family--who i couldnt do this without--and for my little girl--sick or well---just being you brings a smile to my face everyday. I will hang in there and be strong for you as long as you can fight this fight. We will do it together. As for Makenzie--right now she is sitting in her Granny and Papas living room playing like she doesnt have a care in the world. Her color looks a little worse each day--but she keeps a smile on her face--so we will too. I also just have to tell you about some of these wonderful people I work with. They have done so much for us over the past year. They are working on raising money for a trust fund that will be used during transplant time--and yesterday they presented me with a laptop computer---saying i never did anything for myself anymore--so they wanted to. They are just awesome people---not only for the gifts--but for the care and concern and changing schedules to help us and just for being there. I love you guys. We will get more labs on Makenzie on Monday--but until then we are just going to enjoy this Thanksgiving Day and be thankful for all of the time that we have had together so far---and not worry about the future for a little bit. Thank everyone so much!!! I also want to let you all know about a new venture we are working on--Makenzie now has her own online store--check it out when you have time. www.cafepress.com/makenzie --it is really neat--you can Makenzie anything!!! Her trust fund makes a little bit of the $$--but most of all it just gets the word out about her and organ donation. But if anyone ever wants one of her shirts let me know--we have a bunch to sell before we go to the ones in the store. There will be an article in the Roanoke paper about her next Thursday--we are looking forward to that. Take care everyone!!!

Monday, November 25, 2002 at 04:20 PM (CST)

Well Makenzies labs today are slightly better. Her bilrubin is still 5--but the enzymes are back into the 300s anyway--maybe they will continue to trend down. She acts like she feels pretty good even though she continues to dump--so we have shut her feeds off and will see what happens. We are hoping she will stay well long enough to go to WV for Thanksgiving---lets all cross our fingers!!!

Wednesday, November 20, 2002 at 07:37 AM (CST)

Hello all---well Makenzies liver numbers continue to climb and she continues to get more yellow. Her bilirubin is up to 5---which isnt good. We have calls into Pittsburgh now---originally when she had her liver biopsy they decided not to list her for a liver, even though it showed damage, because her bilirubin was less than 5. So we will see what they say. If a donor isnt found soon I would imagine her liver will be at a place where it wont be able to heal itself. I will keep you all posted. Makenzie says to tell you all hi and we hope to see you at her birthday party---she has been asked to please stay out of the hospital for that---if not though we will just have a party there.

Wednesday, November 13, 2002 at 11:54 AM (CST)

For my first entry I will try and sum up Makenzies first year. She was born Dec. 6, 2001. Within 24 hours we knew something was wrong. After several weeks and several surgeries Makenzie was found to have Near Total Intestinal Hirschsprungs disease. Basically a set of nerve cells in her intestine didn't develop properly and so they didn't work to move or absorb nutirents properly, and all but 1 foot of them had to be removed. She is fed by a special IV in her chest with what is called TPN (total parenteral nutrition) and very small amounts of formula through a tube in her stomach. She also has an ostomy for elimination. She has spent a great deal of her life in the hospital due to infections from the IV and from surgeries---but you would never know it to look at her. She is developing normally and is the sweetest baby you can imagine. Her liver is now becoming damaged because of the IV nutrition which you can tell by a hint of yellow in her eyes. She is now on a waiting list for an intestinal transplant in Pittsburgh, PA at the Childrens Hospital. If a donor is found soon enough her liver will hopefully be able to heal itself---if not however, she will need a liver tranplant as well that would be done at the same time. That pretty much sums up her first year. She is now home playing in the floor while I am trying to plan a very special 1st birthday party for her. We live in Roanoke, VA and the people here have been wonderful to us. We are just now getting her story out in the public as need for a transplant becomes more necessary. I hope you all enjoy her page and I will add updates as things occur. Thank you all for your support.

Wednesday, November 13, 2002 at 11:54 AM (CST)

For my first entry I will try and sum up Makenzies first year. She was born Dec. 6, 2001. Within 24 hours we knew something was wrong. After several weeks and several surgeries Makenzie was found to have ultra long segment Hirschsprungs disease. Basically a set of nerve cells in her intestine didn't develop properly and so they didn't work to move or absorb nutirents properly and all but 1 foot of them had to be removed. She is fed by a special IV in her chest with what is called TPN (total parenteral nutrition) and very small amounts of formula through a tube in her stomach. She also has an ostomy for elimination. She has spent a great deal of her life in the hospital due to infections from the IV and from surgeries---but you would never know it to look at her. She is developing normally and is the sweetest baby you can imagine. Her liver is now becoming damaged because of the IV nutrition which you can tell by a hint of yellow in her eyes. She is now on a waiting list for an intestinal transplant in Pittsburgh, PA at the Childrens Hospital. If a donor is found soon enough her liver will hopefully be able to heal itself---if not however, she will need a liver tranplant as well that would be done at the same time. That pretty much sums up her first year. She is now home playing in the floor while I am trying to plan a very special 1st birthday party for her. We live in Roanoke, VA and the people here have been wonderful to us. We are just now getting her story out in the public as need for a transplant becomes more necessary. I hope you all enjoy her page and I will add updates as things occur. Thank you all for your support.

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