Last Post for a little while..........

This will be my last post on our family blog page for a while. Please scroll down and see the quick updates I posted about the girls. Since Major's kidney transplant is only 16 days away, I will start blogging on his COTA website so that family and friends will not have to go back and forth between sites. I will journal about Major and Karroll and try to keep you all updated routinely. Thank you to all our family and friends who have been so supportive of our family. We love you all very much. Please feel free to pass Major's website information to other friends. The more love, prayers, and support we have will help our family during this exciting adventure. I ask for special prayers for not only Major and KK(who will graciously give one of his kidneys) but also for our girls who will be away from us until August. A special thanks to Teresa and Jack for caring for the girls over the next few weeks and my parents who will have them until school starts in August. We will pray for you all too!!!!I believe we all have a purpose in life but I know that God sent Major to this world to have a drastic and everlasting effect on each and every person that hears his testimony. Let the games begin........

First Day of 1st grade
Last Day of 1st grade

Taylor gad a great 1st grade year and we loved her teacher. She has lost 6 teeth this year and her looks are definitley changing. She looks more and more like her father every day. She held a student-parent conference with me on the last day of school to share what she has learned and I am truly amazed. I do not remember learning that much until at least second or third grade. The girls will attend a brand new school in our district and neighborhood in the Fall. We are excited to be a part of creating new traditions at Parkside.

Sydney's recital

Sydney had a tap recital a few weeks ago and did absolutely wonderful. She has natural rhythm unlike her mother. Kari knows what I mean!!! Her dance was called "Banana Phone" and she performed in front of hundreds of people. She is the third girl from the right on stage. Good job Sydney. We are so proud of you!

Surprise

Surprise!!!! Major's labs look much better. The dialysis fluid is normal, all blood cultures are normal, CBC normal, CRP normal, and ESR is going down(this can take a week or so to go back to normal). He also has a normal temperature for the past 36 hours and he is very happy. Except for the fact that he wants to be home so I will work on that request today! Prayers are continually answered by our almighty Father. Thank you for the continued love and support. If you did not receive an email from June, please check out Major's new website for the Childrens Organ Tranplant Association-----

www.cotaformajork.com

We are starting our official fundraising campaign to help defer some of the expenses of his transplant and being out of work for months. Donations are tax deductible as COTA is a not-for-profit 501(c)(3)tax exempt organization. Donations are made to COTA in honor of Major Key. All proceeds raised will go to Major for transplant related expenses for the rest of his life.

June is having a volunteer meeting with a COTA representative at her house on Monday June 23, 2008 at 6:30pm. Please let us know if you are interested in attending and I will give you more specific information.

Love to all our family and friends!!!!!!
.

On the roller coaster

Okay, the past 20 hours Major has had a normal temperature on 3 antibiotics. Two of the antibiotics are in his dialysis and one is through the IV. I really appreciate that the health care team listened to my concerns yesterday. Major had an ultrasound of his abdomen and today he had a CT of his abdomen and sinus cavities. Everything looks normal and all of the blood cultures are negative at 24 hours. So he is showing improvement but there is not a definitive cause of his prolonged fever. Everyone is a little puzzled. The true test will be if Major stays fever free when off antibiotics in the next 7-10 days. I am believing that Major's labs will look better and once again surprise the medical world! Praying for God's will to be done. On the roller coaster again!!!!!

Another Roadblock

Major was admitted to the hospital yesterday for a fever that has lasted for 10 days as of Tuesday morning. He was seen twice last week at the pediatrician's office and was put on two different antibiotics after cultures were taken from his few drops of urine and his blood work showed a bacterial infection.

When we arrived to the hospital, the Nephrologist on call and the Infectitious Disease doctors came to see Major and ordered more labs and cultures. So far the only growth of bacteria is in his peritoneum-where dialysis takes place. It is very unusual to me because Major has had clear dialysis fluid over the past 10 days and he has not had abdominal pain which always goes along with peritonitis, so I am not sure I will be complacent with that as his diagnosis. I will make my concerns known today---parents must always advocate for their child's health! I have certainly learned this lesson the hard way over the past two years.

I'll update more later when I find out more about his condition. Please pray for God's healing power because this illness could potentially affect transplant if it is not resolved completely!!!

July 7, 2008------------"T" Day

Major at 1 week of age......... and now Major at 2 years of age


Well it is official.....finally. Major will have his kidney transplant on Monday July 7, 2008 at Lucile Packard Children's Hospital at Stanford. KK is very excited and in awe that he will be able to save our son's life and give him a fresh new start by donating his left kidney. Thank you all for your love and support and we ask for continued prayers as our family embarks on another adventure. The plan will be that either KK or I will stay with Major in California for 100 days post transplant so there are still details that we will have to work out but it is all good!!!!!!God provides for all our needs in His time and place.

Slam Dunk........ to transplant!

Major and KK are playing basketball at the neighbor's house. This is one of Major's absolute favorite activities.

KK went to California last week and met with the social worker(to evaluate his sanity as a father of three), adult nephrologist(to check him from head to toe and clear him for surgery), and to have a 3D CT of his abdomen to look at his kidneys. Apparently it went well, the nephrologist only wants two more simple blood tests on KK. Major also need a few more things or as I say we need to jump through a few more hoops for the medical community. Remember this is written(spoken) from a medical person too! Tomorrow, Major goes to the dentist to check off he has no cavities, then off to do an ultrasound of his neck and chest, then off to the dialysis clinic for his monthly visit and a few more blood test, and finally to the pediatrician's office for a PPD(tuberculosis test). It is my day off tomorrow so we might can rest by dusk!!!! I spoke with the transplant coordinator today and she thinks we will be able to schedule a date within the week. The first week of July is looking very promising. I do not think I can pull it all together and make all the needed arrangements in the next 10 days but I can do it all in the next 4 weeks. We would just like to have a date set for the BIG day! Karroll's mom and Paula, one of his lovely sisters and her husband have volunteered to go to California with us for the initial transplant celebration. I am so thankful to have their help with Karroll and Major. The girls will spend some time with their cousins in Oklahoma and then with my parents in Lubbock. I think the girls might get a little spoiled this summer but they deserve the extra attention. They have been such little troopers having a brother who is chronically ill who needs more help than the average two year old. He is so lucky to have those sweet sisters. I will update more when I have a date set in stone not on floating lily pads!!!! This is a beautiful garden center a few miles from our house. I would love to have the time and energy to create a pond like this in our backyard.

Karroll is a Match!!!! Praise God!!!

We received the call today from the transplant coordinator from Lucile Packard Childrens Hospital. Karroll is a match and will donate one of his kidneys to Major. It will take place this summer as soon as we can get everything organized. Karroll is having a complete physical tomorrow with his doctor and a few more blood tests to make sure he is currently healthy and Major has blood work scheduled for next week. Then Karroll will fly out to California to have a 3D scan of his body to look at his kidneys and structure of his body for the transplant surgeon and he will meet with the team that will take out his kidney. So that is why I do not anticipate this to happen before mid June at the earliest.

We will need some help with the girls this summer. If anyone can help take care of the girls , I would like to organize dates among all of our dear relatives and friends. The girls are expecting to have a fun filled vacation type summer. Remember anything away from home is a vacation to them. So let me know if you have some extra time or energy during the summer. I also need a volunteer, maybe Mother Myrna or one of KK's sisters to go with us during the initial transplant time to help me care for both of them after surgery. Major and Karroll will be in separate hospitals that are connected, but I can't be in two places at once. I'll continue to keep you posted with more exciting drama as it unfolds before our eyes!!

Spring Fever

We had a fun filled weekend with the kids. We took them and Ms June to Marble Falls to visit the strawberry fields, goats and donkeys. We picked fresh strawberries and fed the goats. On Sunday, KK and the girls made strawberry jam with our fresh berries. It was actually pretty good jam! We have also planted tomatoes, carrots, corn, onions, green peppers, and lettuce in our backyard garden to see if we can grow our own veggies. So far so good. The seeds are sprouting leaves and there are a few green tomatoes on the vines. I think we might actually have a green thumb among the five of us. I have great news tonight!!! Major will be listed on the UNOS(United Organ Sharing Program)waiting list this week in California. This means that Major will be placed on the waiting list for a cadaver kidney while we wait on the final testing of his wonderful and generous father. The transplant coordinator expects we will have all of KK's results within the week. I can see that this is going to happen for Major in 2008!!! Here is a sweet video of Major's first push toy cruise down the hallway with the help of his sisters.

Home Sweet Home

We are home sweet home in Texas as of midnight Friday night. Thank goodness our flight did not get cancelled by AA. Major did much better on the way home and I learned my lesson to never give him Benadryl again. We all slept well last night especially Major. He loves his crib! I got up early and took the girls to soccer while the boys slept. The girls had a great time with June and Greg. They are such a wonderful and indispensable support for our family. Thank you both so much!

Our last day in California was busy once again. We were at the hospital by 8am for Major to undergo anesthesia for a MRA and Chest CT. All went well but I don't know any results yet. KK had his blood drawn to check for any antibodies and for matching purposes. We should know for sure in a few weeks if he is a match. We are very pleased with the team at Stanford and believe that Major would be in the best hands. In my perfect planned out world, if KK is a match we are planning to do the transplant with the Stanford team in the next few months. We will look for a place to stay in California. If any body knows anyone in the Palo Alto, San Jose, San Francisco area who might have a guest house or other housing, please let us know. We are looking at all the available options! I am also going to submit the paperwork to apply for Children's Organ Transplant Association( www.cota.org )so we can do a few fundraisers over the next few months. This would allow all the donations to be tax deductible. We are excited about the adventures coming our way and we want to share this journey with our friends and family.

Second Day in California

Look at the beauty on the West coast!


Today we had another full day of visits with the transplant team. We have been very impressed with the facility of Lucile Packard and the team. Karroll will have more tests run tomorrow and Major will have anesthesia to do a MRA of abdomen looking at the vessels and placement options for a kidney and hopefully a CT of his chest to look for any problems pulmonary wise prior to transplant. I had heard rumor from a friend, yes you Jill, that we would be expected to stay here and plan to stay for 100 days post transplant. It is a little scary to think we will have to arrange our lives to have one of us here with Major for 3 months at least and then arrange for care of the girls during that time too. I know it will all work out and I believe God will show me the way. I am extremely excited about the research going on here with pediatric transplant patients. I like the possibility that Major may qualify for a steroid-free or low dose steroid medication regimen post transplant. This option could really benefit him from a growth potential and development perspective. The transplant surgeon was so good with Major and assured us that he is the only one who will do Major's surgery from opening his body to close(this is a teaching hospital so there are many residents and students here). I will try to post the picture of the surgeon with Major. Dr. Concepcion insisted on taking a picture with Major. Of course, everyone has been drawn to Major with those sweet blue glasses and the amazing "scooting show." Another big day tomorrow and then a late flight home as long as AA doesn't cancel the flight between now and then.

First Day in CA

We made it to California and Major endured his first day of testing. The plane ride was rather daunting with Major. He screamed for a good portion of the trip and those of you who know him realize that is totally out of his character. He also was the only child under 12 on the plane. Yesterday Major had a full day of testing including EKG, Echocardiogram of his heart, Chest x-ray, abdominal ultrasound, and video urodynamincs. Maj reacted like a two year old screaming whenever someone touched him and then he was fine. I don't blame him for screaming during the urodynamics study--it is very invasive as they put a catheter in his penis and bottom and electrodes all over his private area!!!! But we have some good news, the urologist here feels like Major's bladder is capable of having a transplant now. He feels like his bladder will stretch naturally with more urine flowing through with a healthy kidney. He also recommends not doing bladder augmentation unless it is a last resort to save the new kidney. Yeah!!! Today we meet with the transplant team and Major and Karroll will have their blood drawn to check for compatibility. I'll keep in touch. Thank you all for your continued support and prayers.

Off to California

Today is the day we are leaving with Major to California. I am both excited and very nervous. Major unfortunately is not happy this morning so the plane ride might be quite interesting. I think the oak pollen is affecting him too. Thank you to all of the wonderful people who have been so generous and thoughtful to our family over the years. We truly appreciate each and every one of you. I am praying that we hear some exciting and promising news for Major's next challenge in life-his kidney transplant. We will be very busy with appointments and tests all week. I promise to update the blog at the latest when we get home Friday night. Please continue to pray for Major's health and happiness and a covering of protection for our girls while they stay here with June. You know, June may need those extra prayers too!!!!! Love to you all as we go on our next adventure out west!!!!

On another note, Kari is having vision problems again related to the Multiple Sclerosis. She is such an awesome person and I know that this is both physically and mentally difficult for her. I ask for special prayers for her that God will restore her sight ASAP! Hang in there Kari. I love you sis!

Happy Easter!

Happy Easter to all of our family and friends. We took the girls to church this morning to see an awesome illustrated drama of Jesus' death and resurrection. Thank you God for sending your son for all of us. What love God has for each of us to give his only begotten son. The love we have for our own children barely compares to the love God has for us. That is totally amazing to me and I am so thankful!

We are leaving for California in two weeks to see the transplant team. I am very excited for Major and our family. He is doing well growing and attempting to walk. The girls are good and spoiled! I will update more after our trip.

I had a nice visit with my sister last week. I really wish we could live closer to one another because she is such a dear friend to me. Thanks for coming to see us Kari and Jeremy. We love you!

My cousin recently adopted a sweet little girl from China. Please pray for them as they all adjust to a new life and especially for the health and development of their baby daughter who has some delays. We love you Adiah and welcome to our crazy but loving family!

Soccer Frenzy

Are you surprised that I actually blogged two days in a row???? Taylor had her first soccer game this Spring and she won. She is getting a little more aggressive but she lacks her mother's killer instincts. KK had to work all weekend so the kids and are are on our own!!! Here are a few pictures that I took of the kiddos at the soccer game.

The Key Adventures

I saw that my sister posetd today so I thought I had better get on the ball and blog since we will not have another Leap year until 2012. What better day to post than today. Let me catch you up on all of the Key adventures. We celebrated Taylor's birthday on February 5th and had a fun family party at Chuy's, Taylor's favorite reataurant. We went to San Antonio and met with another urologist about Major who suggested we continue bladder stretching through a Foley catheter over the next 3-4 months and then re-evaluate for transplant. He absolutelty hates the catheter so that is a daily struggle. We also have an appointment at Stanford the second week of April to meet with everyone on their transplant team. Hopefully after that visit, KK and I can make a more educated decision about Major and know what specifically to pray for over the next months. Our family appreciates all the love, support, and prayers that continue to bless our Major. For the very first time tonight, he said "Thank you Mama." I thought my heart was going to melt. He is making great strides in his development and looks very much like an active toddler.

As March is approaching, we are anticipating KK's birthday. He is not too keen on growing old so I don't know how much celebrating he will want to do. He will be closer to 50 than 40 and I think he feels it!!! Our young, active, wild children will keep him young at heart. Taylor is going to Chef school over Spring Break at the new Young Chefs Academy that is opening 4 miles from the house. She has the desire to be a Chef when she grows up so we will give her a head start. Sydney has been a challenge since she turned 5. I feel like I have a teenager at home instead. Maybe I should send her to live with Papa since he survived me as a teenager!!!! Any suggestions from those more experienced mothers of "teenage-like" girls???

Sydney is 5!!!!!

How in the world can all of my childrern have birthdays within a three week period? We must celebrate a lot at the end of tax season!!! Sydney had a birthday party at Sweet and Sassy over the weekend. If you don't know what Sweet & Sassy is beware, it is a salon for little divas like Sydney. We had 13 little girls from the ages of 31/2 to 7 getting updo's, manicures, makeup, and dressing up to walk the "runway." What an absolute riot to see all those girls pretending to be the next Princess or Miss America. Karroll and Major decided to stay home because there was going to be more female hormones than Major can deal with in two hours.

We leave for San Antonio next week to meet with a urologist for a second opinion about Major's bladder. I think we are going to take the girls too and make a fun day trip. We might go to the zoo or the Riverwalk since the girls complain that we never go away on vacation anymore. Poor mistreated girls!!!! We are still waiting to set a date for Lucile Packard in California. They are still verifying and getting permission from Major's many insurance companies before we fly out West. I think we are going to join with Childrens Organ Transplant Association(COTA) to raise more funds for Major's transplant. The Miss Georgetown pageant wants to donate all the proceeding to Major's fund so we are working on getting donations that can be tax deductible. With the thought of moving to California for several months and trying to maintain a home here in Round Rock, I am a little nervous about the logistics of everything. And some people worry about "what's for dinner" while some of us worry about keeping a child alive. It is all about perspective and priorities.

Happy Birthday Major

Happy Birthday to you. Happy birthday to you. Happy birthday dear miracle Major. Happy birthday to you!!!! Wow, I can't believe that the little boy who was given very little hope is now two years old. We had a very small party for Major including the five of us and June and Greg. Unlike last year when we had over 100 people at our house on the coldest day of the year. We are going to San Antonio to meet with a urologist on February 8 to get another opinion about his bladder. Lucille Packards transplant team from Stanford also wants to evaluate Major out in California in the next 6-8 weeks. According to the tranasplant coordinator, "We can help Major!" What a blessing and also a scary thought that one of us may have to move to California for a few months if transplant is done there. I know the good Lord will work out all the details so I will put it in His hands. Here is a mini video of Major dancing to his new boom box with a little help from his sisters and Ms. June.

Taylor on Ice

Taylor has a new love for ice skating. Only in Texas can you ice skate in 60 degree weather on the roof of a Whole Foods Store. I love Texas!!!!

Sydney's curls

After reading my cousin's blog about her daughter wanting to have a perm, my nearly 5 year old sweetie started asking for curls too. So we tried the good 'ol pink rollers and voila!!!! She alternates every other day with either straight or curly hair. I am nervous about the teenage years with this one!

More medical opinions for Major

I hope you all are doing well. We continue to stay very busy in the kids lives. UT starts back this week so I go back to teaching on Thursday. Since the weather has been so great here, the kids are having a great time riding bikes. Even Major is testing the road on the baby ride. Got to love that pink helmet! Poor guy has some girlie hand me downs. The doctors here in Austin are running out of ideas for Major's bladder therefore delaying a transplant. We are going to meet with a specialist in San Antonio in February and hoefully will fly to Stanford soon after to meet with the best pediatric kidney transplant surgeon and urologist in the US. This doctor has written more articles on tranplanting kidneys into little boys like Major who have had serious obstructions in utero. I am believing that God will continue to bless Major's life with a transplant in 2008.