Monday, December 28, 2009
Merry Christmas, Happy New Year... Welcome 2010!
I start off today, January 1, 2010, with an apology. I am so sorry I have not updated the blog since Kayli's birthday! I will try to cover everything today, which will make this a very long post! However I will let you know first thing, I do not have much of a medical update today. Kayli had an appointment with the Liver team on the 18th. Things looked good- they told her to relax on her diet a bit if it helped her emotionally, but just means she has to be more strict in following her medication schedule and drinking water. She did another round of labdraws this past Wednesday, which we do not have the results of, but the purpose was to recertify her for a liver transplant and adjust her score and location on the list. Her next appointment is this coming Friday the 8th. She is doing well physically. Emotionally she is ready to go back to school, do anything that gets her out of the house, and tired of being sick.
Tomorrow, 1/2/10- there will be a blood drive in honor of Kayli. Its a replenishment blood drive to help stock the area blood banks. Although Kayli does not need blood at this time, we feel it is important for the blood banks to be stocked because "Blood Saves Lives". Kayli's story and the call for the blood drive made page 2 of the Conroe Courier newspaper this past week. You can view the article by copying and pasting the link above.
Kayli had a wonderful 15th birthday! On the 20th she had planned for herself and a couple of her closest friends to go ice skating at the Ice Rink in the Woodlands. Completely to her surprise, we went above and beyond. With the help of friends Aubrey, Cristine, Carly, & Kalei- we invited several CYT, Band, & School friends to surprise Kayli. We met at Market Street in the Woodlands and had a fun scavenger hunt!! We then traversed over to the Ice Rink for hours of skating fun along with some purple & black birthday cake made by our great friend Heather. It was a joyous occasion and we were so happy that so many of our friends could join us and help make Kayli's day so special!!
Christmas was equally as special. Because I had not worked the entire month of November, we were a bit concerned about providing Christmas for the girls. They had both created wish lists for Santa that we just knew we wouldn't be able to pull off. To our rescue, came SMGSL. The softball league that the girls have both played with for several years, Mark & I serve on the Board of Directors. They insisted that I hand over the girls' wish lists, and indeed they provided a wonderful surprise for the girls on Christmas morning! I am so honored to be part of such a wonderful organization who would do such a thing for the players & their families. The joy on the girls faces as they came down stairs to see that Santa had in fact made it to our house this year was so warming to my heart!
Our home was filled with visitors for Christmas, Grandma(my mom) was here from California. Uncle Daniel & Aunt Sunny(Mark's brother & sister-in-law) arrived on Christmas Eve. Granny Norma & Grandpa George (Mark's mother & step-father) and Uncle Tony(Mark's other brother) and the girls cousin Jenny all paid a visit for dinner on Christmas day. My mom made a feast of FAJITAS, one of my (& Mark's) all time favorite meals that she cooks.
We ended Christmas weekend with an annual visit to Santa's Wonderland in College Station along with our neices Jessica & Jenny. This year was special because we took the hayride and visited Santa's Town instead of just driving through to see the lights! We visited the petting zoo, drank hot cocoa and ate funnel cake, and watched 'A Christmas Story' on the big outdoor movie screen. It was QUITE CHILLY that night!!
Work was a BEAR this week!! Both Mark & I worked late almost every single day in addition to neither of us feeling well. We managed NOT to have the flu in the house, but a ragin' cold has had me not feeling too hot all week in addition to the late hours at work. I have had year end inventory, and Mark is working a branch refresh project for the bank. We both managed to make it home at a decent hour on New Year's Eve. I made a big pot of homemade 2-bean chili for Frito Pie, and stopped on the way home and picked up the "Big Grande" box of mixed fireworks from the stand down the road. Most of the evening was spent around the neighbors fire pit with some very nice peeps, Darrin & Shelly and their kiddos popping fireworks. Kayli wandered the neighborhood with some friends and then at midnight we watched as the neighborhood launched a barrage of aerial fireworks. GOODBYE TO 2009...HELLO 2010!!! My mom left to go back home to California this morning, and the rest of the day has been spent being VERY lazy!! :D
I can only wish and pray that 2010 will bring love, happiness, hope, and health for our family and all of our wonderful friends!! Kayli will return to school on the 19th, and hopefully, life will return to somewhat normal for the time being. Please join us in praying that either Kayli's liver will continue to heal itself, or that a new liver will be available for her soon. Below I share with you our holiday photos, and will also attempt soon to get pictures from Kayli's birthday loaded. If you are on Facebook, her birthday photos can be found there!
Tomorrow, 1/2/10- there will be a blood drive in honor of Kayli. Its a replenishment blood drive to help stock the area blood banks. Although Kayli does not need blood at this time, we feel it is important for the blood banks to be stocked because "Blood Saves Lives". Kayli's story and the call for the blood drive made page 2 of the Conroe Courier newspaper this past week. You can view the article by copying and pasting the link above.
Kayli had a wonderful 15th birthday! On the 20th she had planned for herself and a couple of her closest friends to go ice skating at the Ice Rink in the Woodlands. Completely to her surprise, we went above and beyond. With the help of friends Aubrey, Cristine, Carly, & Kalei- we invited several CYT, Band, & School friends to surprise Kayli. We met at Market Street in the Woodlands and had a fun scavenger hunt!! We then traversed over to the Ice Rink for hours of skating fun along with some purple & black birthday cake made by our great friend Heather. It was a joyous occasion and we were so happy that so many of our friends could join us and help make Kayli's day so special!!
Christmas was equally as special. Because I had not worked the entire month of November, we were a bit concerned about providing Christmas for the girls. They had both created wish lists for Santa that we just knew we wouldn't be able to pull off. To our rescue, came SMGSL. The softball league that the girls have both played with for several years, Mark & I serve on the Board of Directors. They insisted that I hand over the girls' wish lists, and indeed they provided a wonderful surprise for the girls on Christmas morning! I am so honored to be part of such a wonderful organization who would do such a thing for the players & their families. The joy on the girls faces as they came down stairs to see that Santa had in fact made it to our house this year was so warming to my heart!
Our home was filled with visitors for Christmas, Grandma(my mom) was here from California. Uncle Daniel & Aunt Sunny(Mark's brother & sister-in-law) arrived on Christmas Eve. Granny Norma & Grandpa George (Mark's mother & step-father) and Uncle Tony(Mark's other brother) and the girls cousin Jenny all paid a visit for dinner on Christmas day. My mom made a feast of FAJITAS, one of my (& Mark's) all time favorite meals that she cooks.
We ended Christmas weekend with an annual visit to Santa's Wonderland in College Station along with our neices Jessica & Jenny. This year was special because we took the hayride and visited Santa's Town instead of just driving through to see the lights! We visited the petting zoo, drank hot cocoa and ate funnel cake, and watched 'A Christmas Story' on the big outdoor movie screen. It was QUITE CHILLY that night!!
Work was a BEAR this week!! Both Mark & I worked late almost every single day in addition to neither of us feeling well. We managed NOT to have the flu in the house, but a ragin' cold has had me not feeling too hot all week in addition to the late hours at work. I have had year end inventory, and Mark is working a branch refresh project for the bank. We both managed to make it home at a decent hour on New Year's Eve. I made a big pot of homemade 2-bean chili for Frito Pie, and stopped on the way home and picked up the "Big Grande" box of mixed fireworks from the stand down the road. Most of the evening was spent around the neighbors fire pit with some very nice peeps, Darrin & Shelly and their kiddos popping fireworks. Kayli wandered the neighborhood with some friends and then at midnight we watched as the neighborhood launched a barrage of aerial fireworks. GOODBYE TO 2009...HELLO 2010!!! My mom left to go back home to California this morning, and the rest of the day has been spent being VERY lazy!! :D
I can only wish and pray that 2010 will bring love, happiness, hope, and health for our family and all of our wonderful friends!! Kayli will return to school on the 19th, and hopefully, life will return to somewhat normal for the time being. Please join us in praying that either Kayli's liver will continue to heal itself, or that a new liver will be available for her soon. Below I share with you our holiday photos, and will also attempt soon to get pictures from Kayli's birthday loaded. If you are on Facebook, her birthday photos can be found there!
Saturday, December 19, 2009
Celebrating 15 years of Kayli
December 20th, 1994 at 11:41 pm, Kayli Noel Curda was sent from God to touch our lives. Please enjoy the pictures below celebrating 15 years of Kayli and join us in thanking the Lord for the miracle of her life.
Friday, December 11, 2009
December 11th
***New update: there are plans in the works for a blood drive in Kayli's honor January 2nd. Also, am considering putting together a team to walk in Kayli's honor at the Liver Life walk in Houston on April 17th...more details on both to follow. :)
I have been a cynic for most of my life. I spent many years doubting people before I got to know them. Over the past few years God has definately shown me his Grace, and in turn taught me grace. I have tried really hard to follow Him, and admittedly there are many times that it's really hard to show grace, love, trust...its hard to believe in people. I turned a corner a few years ago, and though I still struggle often, I want so badly to see the best in people first.
Since Kayli was diagnosed with liver disease, God has shown me how amazing, loving, caring, and generous people are...and I now know that I was right in wanting to follow Him and believe. There are so many caring souls surrounding us each and every day with all that they are doing to help us through this difficult time. It has been nothing short of a Christmas miracle in my heart. I just wanted to take a moment to acknowledge this, and even though I have not been able to sit down and write thank-you's...you are all very dear to us and know that your gestures of kindness, no matter how small, are not going unnoticed. I especially want to thank today Mark's Citibank co-workers in New York, Florida, and California; Oak Ridge High School PTO, Oak Ridge Band Boosters and directors; and Oak ridge High school faculty & administration- what you all have done for us is nothing short of amazing and we continue to be grateful and honored.
There isn't really an update this week regarding Kayli's current health. She did not have an appointment with the Liver doctor this week nor labs drawn. She did have some issues earlier in the week with fluid retention, but it subsided a bit with a couple doses of diuretic, large amounts of water, and some rest in the living room recliner. Her ammonia levels have remained stable this week since she learned that too much protein in her diet contributes to an unwanted increase in ammonia levels and... well, does produce an unfavorable result.
Her next appointment is Friday, the 18th....two days before her 15th birthday which she is really excited about. We received the liver transplant pager today.... so now it truly feels official.
Last weekend we traveled to Galveston to witness the Dickens on the Strand festival. We were joined by Kayli's friend Ryan, and while there visited with some very good friends of ours from CYT. Please enjoy the pictures below from the festival! Kayli had a WONDERFUL time, and it felt so good to get her out of the house and doing something fun!!
Kayli & Ryan trying on some very fashionable head pieces.
Kayli , Rachel, & Elijah are ready for the masquarade ball!!
Kayli, Emily, Ryan, Rachel, & Elijah pose with some other festival goers dressed in Dickens era garb. Next year we may dress up!
Kayli enjoys a stroll down the strand with her best friend. I think Ryan was enchanted by the warriors dressed in armor- or I just caught him by surprise... LOL
I have been a cynic for most of my life. I spent many years doubting people before I got to know them. Over the past few years God has definately shown me his Grace, and in turn taught me grace. I have tried really hard to follow Him, and admittedly there are many times that it's really hard to show grace, love, trust...its hard to believe in people. I turned a corner a few years ago, and though I still struggle often, I want so badly to see the best in people first.
Since Kayli was diagnosed with liver disease, God has shown me how amazing, loving, caring, and generous people are...and I now know that I was right in wanting to follow Him and believe. There are so many caring souls surrounding us each and every day with all that they are doing to help us through this difficult time. It has been nothing short of a Christmas miracle in my heart. I just wanted to take a moment to acknowledge this, and even though I have not been able to sit down and write thank-you's...you are all very dear to us and know that your gestures of kindness, no matter how small, are not going unnoticed. I especially want to thank today Mark's Citibank co-workers in New York, Florida, and California; Oak Ridge High School PTO, Oak Ridge Band Boosters and directors; and Oak ridge High school faculty & administration- what you all have done for us is nothing short of amazing and we continue to be grateful and honored.
There isn't really an update this week regarding Kayli's current health. She did not have an appointment with the Liver doctor this week nor labs drawn. She did have some issues earlier in the week with fluid retention, but it subsided a bit with a couple doses of diuretic, large amounts of water, and some rest in the living room recliner. Her ammonia levels have remained stable this week since she learned that too much protein in her diet contributes to an unwanted increase in ammonia levels and... well, does produce an unfavorable result.
Her next appointment is Friday, the 18th....two days before her 15th birthday which she is really excited about. We received the liver transplant pager today.... so now it truly feels official.
Kayli & Ryan trying on some very fashionable head pieces.
Kayli, Emily, Ryan, Rachel, & Elijah pose with some other festival goers dressed in Dickens era garb. Next year we may dress up!
Monday, December 7, 2009
CYT Houston presents "Seussical the Musical"
CYT is running a special right now which Kayli is involved in and trying to win a ticket contest. Contact me at steph.curda@att to purchase advance tickets at a special price of $8. You can pick your actual showtime at a later time. WHAT A GREAT CHRISTMAS GIFT for coaches, teachers, dance teachers, aunts, cousins, etc!! This special ends December 17th!!!!!
Kayli will be working backstage on this one, and her little sister Emily stars as a "Who" from Whoville and also a circus vendor. She has named her own character "Emily Lou Who" HA HA HA
We hope to see you there!!! Horton, the Grinch, Cat in the Hat, Thing 1 & 2...the whole gang!! :)
Friday, December 4, 2009
December 4th
Has been a litte bit since I updated, but things are moving at a slower pace now...which is GOOD. :)
We met with Kayli's teachers, school administrators, and the Homebound school coordinator on Wednesday. We got very good information but it looks as though Kayli will have to work pretty hard to get caught up, but we kind of knew that. The homebound teacher will come to the house 2 days a week for 5 hours (total) and a Spanish II teacher will come 1 day a week for 2. She will have to work over the holiday break to get caught up and stay caught up. We originally thought she would return to school after the holiday break, but the school thought it best that she returns when the 2nd semester starts on January 19th. This way she will not return to be pushed into final exams, but she will be administered her final exams by the homebound teacher.
The liver doctor put in standing orders so that we can get Kayli's labs drawn at Memorial Hermann outpatient services here in The Woodlands. This way we can get labs drawn a couple of days BEFORE her appointments in the med center so when we go for her appointment they already have some lab results to go over with us. We did that this week and it worked out GREAT.
Today's visit was good. Kayli's lab results, bloodwork numbers, are looking better overall. She is still no where near normal, but looking better. Her platelets are still extremely low, but her clotting factors are better. All other blood cell counts looking much better. Her liver function numbers are the same, stabilized which is good, though her liver enzymes are down slightly which is great! Her bilirubin has gone up though, which is not good- and her ammonia levels are still fluctuating alot, but they added in an additional medication to help with both of these things. This will also help her sleep better at night as she has been pretty restless lately. One of the transplant doctors came and visited with us today. We had a transplant question and Dr Rhoades paged him and had him come right over from the hospital and talk to us, it was really nice and he clarified several things for us that we still had questions about. We had not met him before, but he knew exactly who we were and knew alot about Kayli's case. He said they are still estimating a 3-6 month wait for a liver. I think I will put on my Christmas wish list I would like a liver for Kayli the beginning of June...HA HA- school will be out and she can spend the summer recovering and be ready to start her Sophomore year on time!
She will not have a doctors appointment this week or labs drawn which she is very excited about, and for the time being as long as she continues to progress we will continue with biweekly appointments instead of weekly. As for Kayli, she is feeling great, and she feels pretty normal though she still tires easily sometimes. She is very excited about and has started counting down the days til her 15th birthday- afterall we have MUCH to celebrate when December 20th rolls around and I know she is looking forward to it.
***Blood donations- I will soon have information regarding a blood drive in Kayli's name! If you have been donating and would like to rest up your arms and veins and blood cells...it is to be held January 2nd. I will give more information as it comes available to me. As you know, during both of Kayli's hospital stays she had many, many blood transfusions. At a time when she needed platelets and whole blood so that a life-saving procedure could be performed, we heard the dreaded words; "the hospital blood bank is out, and the local banks are all running too low to spare any- the procedure cannot be performed until we can give her more and have extra on hand." Though Kayli is not in need of transfusions at this time, she will at time of transplant...and she is at a high risk of bleeding and hearing that the blood bank does not have what she needs is something we do not ever want to go through again. MORE IMPORTANTLY, we as a family do not want ANYONE else's loved ones to ever have to hear those words, ever. Nobody should ever have to go through that. If we can do our part to ensure the local blood banks are adequately supplied, then we feel that God has truly Blessed our journey and struggles and saw a way for us to triumph against them, and this mission was given specifically to Kayli and our family because we have the army needed to fight the battle. This thanks we owe to all of you, our beloved and devoted Army.
We met with Kayli's teachers, school administrators, and the Homebound school coordinator on Wednesday. We got very good information but it looks as though Kayli will have to work pretty hard to get caught up, but we kind of knew that. The homebound teacher will come to the house 2 days a week for 5 hours (total) and a Spanish II teacher will come 1 day a week for 2. She will have to work over the holiday break to get caught up and stay caught up. We originally thought she would return to school after the holiday break, but the school thought it best that she returns when the 2nd semester starts on January 19th. This way she will not return to be pushed into final exams, but she will be administered her final exams by the homebound teacher.
The liver doctor put in standing orders so that we can get Kayli's labs drawn at Memorial Hermann outpatient services here in The Woodlands. This way we can get labs drawn a couple of days BEFORE her appointments in the med center so when we go for her appointment they already have some lab results to go over with us. We did that this week and it worked out GREAT.
Today's visit was good. Kayli's lab results, bloodwork numbers, are looking better overall. She is still no where near normal, but looking better. Her platelets are still extremely low, but her clotting factors are better. All other blood cell counts looking much better. Her liver function numbers are the same, stabilized which is good, though her liver enzymes are down slightly which is great! Her bilirubin has gone up though, which is not good- and her ammonia levels are still fluctuating alot, but they added in an additional medication to help with both of these things. This will also help her sleep better at night as she has been pretty restless lately. One of the transplant doctors came and visited with us today. We had a transplant question and Dr Rhoades paged him and had him come right over from the hospital and talk to us, it was really nice and he clarified several things for us that we still had questions about. We had not met him before, but he knew exactly who we were and knew alot about Kayli's case. He said they are still estimating a 3-6 month wait for a liver. I think I will put on my Christmas wish list I would like a liver for Kayli the beginning of June...HA HA- school will be out and she can spend the summer recovering and be ready to start her Sophomore year on time!
***Blood donations- I will soon have information regarding a blood drive in Kayli's name! If you have been donating and would like to rest up your arms and veins and blood cells...it is to be held January 2nd. I will give more information as it comes available to me. As you know, during both of Kayli's hospital stays she had many, many blood transfusions. At a time when she needed platelets and whole blood so that a life-saving procedure could be performed, we heard the dreaded words; "the hospital blood bank is out, and the local banks are all running too low to spare any- the procedure cannot be performed until we can give her more and have extra on hand." Though Kayli is not in need of transfusions at this time, she will at time of transplant...and she is at a high risk of bleeding and hearing that the blood bank does not have what she needs is something we do not ever want to go through again. MORE IMPORTANTLY, we as a family do not want ANYONE else's loved ones to ever have to hear those words, ever. Nobody should ever have to go through that. If we can do our part to ensure the local blood banks are adequately supplied, then we feel that God has truly Blessed our journey and struggles and saw a way for us to triumph against them, and this mission was given specifically to Kayli and our family because we have the army needed to fight the battle. This thanks we owe to all of you, our beloved and devoted Army.
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