American Liver Foundation "Liver Life Walk"!!!

Read my story at http://go.liverfoundation.org/goto/KayliLiverStory.



On April 2, 2011, I will participate in the Liver Life Walk to raise funds for the work of the American Liver Foundation – the nation’s leading nonprofit organization dedicated to liver health and disease prevention. I hope you will join me on Team Kayli. Beyond raising money for a worthy cause, the Liver Life Walk is a fun event for the whole family!

Liver disease is often unknown or misunderstood. Here are some compelling statistics:

1 out of every 10 Americans is affected by about 100 types of liver disease.

That is 30 million people — the number of people in the United States living with diabetes and cancer combined, and the same number of people who live in America’s 15 largest cities.

60% of the 26,000 people who die each year from cirrhosis have no history of alcohol abuse.

Nearly 17,000 people are on the waiting list for a liver transplant.

The American Liver Foundation (ALF) is dedicated to a future where there are effective treatments, cures, and no one dies waiting for a liver transplant. The ALF mission is to facilitate, advocate and promote education, support and research for the prevention, treatment and cure of liver disease.

Participating in the Liver Life Walk is an opportunity to do something good in the community, work toward a future free from liver disease, and support the 30 million Americans affected. Start today:

Join our Liver Life Walk team, Make a personal contribution to this worthwhile cause, and raise funds for research, education and advocacy.

You can register at www.liverfoundation.org/walk and follow the prompts to register for the Houston walk on Team Kayli. When you register, you will receive valuable fundraising tools and information from the American Liver Foundation, in addition to your own personal fundraising Web site.

If you are unable to participate but would like to support my efforts with a contribution, you can donate online at http://go.liverfoundation.org/goto/KayliLiverStory.

With your help, we will fund important work and raise awareness of these diseases that afflict millions of people. If you have questions about the Liver Life Walk or the work of the American Liver Foundation, please do not hesitate to contact me. Thank you in advance for your support! And remember to read my story or join my cause at http://go.liverfoundation.org/goto/KayliLiverStory.

One Year!!



Kayli's Christmas present to herself.



Kayli hit her one year mark January 3rd, 2011! :) Medically all is still perfect and they have taken down her meds even more. She is now only on 3 meds I think. Dr Mieles retired at the end of 2010, and was very sad to transfer her back to the GI doctors, but everyone there was happy to see her again. There truly is nothing new to report on the medical side of things :)



Cristine, Kayli, & Josh



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Kayli & Josh @ Sweet 16



Personally, she is enjoying her Sophomore year at school and being 16!! We celebrated her Sweet 16 with a "black light" dance party and several of her friends. And she got her drivers license a couple of days later. She is still active in band, and recently made a I at UIL Solo & Ensemble. She is also the manager of the Varsity softball team at school, even though she still is not convinced she can play herself, she enjoys helping out. She also has a job, working at Raising Cane's, YUM!!! (Mom is really enjoying that) So, really she is staying very busy which is great!! She also has a new boyfriend, Josh. Such a cutie pie and nice kid. He is also in band at school and they have been friends for awhile. And...thats about it???



Homecoming 2010 friends



On April 2nd we will walk in the American Liver Foundation's "Liver Life Walk" in Houston. Its a big fundraising event to help fight Liver Disease. I will post more information on it above. Kayli is very excited to be doing something, and her fundraising efforts have been amazing. JOIN US!!! :)



Kayli & Josh being silly after school.



Kayli & friend Dani @ Confirmation Retreat



Marching!





Kayli & date Eric @ Homecoming



SIX MONTHS- Originally written on July 2nd, 2010 and posted on Facebook.

At times it feels like a lot, LOT longer. It almost feels like it was years ago...but yet, it was only a few short months ago that Kayli's life was saved by a liver transplant. Six months ago to be exact. :)


It's been awhile since I updated our blog... I guess I should go do that. Facebook is SOOO easy to use though, and its really easy for everyone to just glance at our Staus Updates...so I'm sure most of you know what Kayli has been up to. :) I think my last MAJOR update was during school, shortly after Kayli had accompanied Ryan to his Senior prom and they had traveled to Disney with the high school band and where in the middle of CYT's production of Cinderella where Emily was a mouse, Kayli was a townsperson and servant, and Ryan was in the orchestra. Since then, not a whole lot has happened...well okay NOTHING MAJOR OR SCARY has happened. :) We have been busy though. My neice Kinsey came to stay with us for a short time, and Kayli's doctor was not happy and said it was not a good idea since she was enrolled in daycare, and pre-schoolers have LOTS of germs that could be really dangerous for Kayli. So i then flew to California to take her back to stay with my mom and her siblings.

School's out, and she scraped by grade-wise. We were hoping for better, but I guess you can't expect too much out of someone who missed 4 months of her Freshman year to save her life. She was very much looking forward to summer, and spending time with her friends, but seems her friends have all been a little busy and I have gone back to work full-time...which makes for a pretty boring summer for her. She got a job though!! She loves it!! She is a Party Coordinator at Sweet & Sassy, and is pretty excited that she gets paid to put make-up on little girls and sing and dance with them!!! OH and she also started Driver's Ed and got her driving permit a couple of weeks ago- so now she asks to drive ALOT. :) She doesdrive pretty good though for a beginner. She is doing everything she can to be a normal teenager, and being very successful at it :P (stubborness and all). She has a little under a month before summer band practices start...so hopefully she will get a chance to get out and enjoy herself a little more before then.

So the news you have all been looking for- haha I purposely made you read through my dribble :)

At Kayli's last doctor's appointment, her numbers were all perfect and liver function tests are all great. They have cut several of her medications, and she is now down to only 3. They have also reduced her lab draws/bloodwork to every other week instead of weekly... which means less needles and poking!! AND they also moved her followup appointments from once a month to every 3 months!!!!! Her next appointment is in September (unless any of her bloodwork changes). We still hold our breath for a couple of days after she has had labs drawn, but usually by the 3rd day we are relaxed that all is still well.

As of tomorrow- her official 6 month mark, she is officially released for physical activity. Dr Mieles wants her exercising regularly and encouraged her to get back involved with sports and everything. She now has no restrictions (aside from changing the littler box! haha) She said riding her bike is boring and its too easy to just coast and not get the exercise she needs and I know she is not motivated enough to run regularly...so we are compromising and getting her a pair of rollerblades as her "Liver-versary" gift. She actually used to roller blade ALOT, but has been so busy with softball the past few years that she got away from it. We also found out that she can play softball if she ever wants to get back to it, but not sure she could ever compete at the level she was before. I would love to see her start playing again and so would Mark, but we both know its gonna have to be on her terms.

Both her and Dr Mieles were a little sad that it was time to reduce her follow-up appointments, and we found out that normally patients are transferred back to the GI specialist at the 3 month mark...whereas Dr Mieles has held on to Kayli as his patient and will continue to do so, his assistant said he got pretty attached to her. WHO WOULDN'T??? I have never met such a brave young woman. There are still days that I break down and cry on my drive home from work, or I re-tell the story of her plight to my new co-workers, or I am browsing the pictures on my cell phone and come across the pictures of Kayli on life support. I can't believe my little girl has been through what she has been through, and I cant believe what a strong and amazing young woman she has become because of it. She is beautiful, and I can only hope that I am doing everything that I can do to be a good mom to this totally incredible miracle.

Happy 6 months "LIVER-versary" Kayli- I love you and I hope you continue to live your new life to the absolute fullest and don't ever let anyone tell you that you are living it wrong...and don't let ANYONE bring you down. Your happiness is first- remember that, and you can do ANYTHING you put your mind to- you just have to believe in yourself.

 Kayli & Ryan in front of the famed Cinderella's Castle at Disney World.

 Kayli & Ryan at a dress rehearsal for CYT's Cinderella. Kayli was a townsperson and a servant and Ryan was in the orchestra.

 At Ryan's graduation.

 Kayli and her best friend Rachel, summer. Rachel spent most of the summer with us...becoming a part of the family and also started dating Ryan's younger brother Kyle.

 Ryan worked as the Chick-Fil-A cow this summer. What a great chance for us to go see our favorite team!! We took Rachel and Ryan's sister Hailey along to see the Astros game!

 At surfside beach, Kayli definately had no problem whatsoever this summer showing off her amazing scar.

Kayli and her mickey ears at Disney.

Prom

as been another month since I updated. Kayli is doing well still. A couple of weeks ago she developed some mouth ulcers as a result of one of her medications. The doctor removed her from that med to give her mouth a chance to heal, and they prescribed her a mouth rinse. She was in sooo much pain, and ended up being out of school a week per the doctor. Seems so silly, a mouth ulcer, but for a recent liver transplant patient could be devastating, even life threatening. As a result of the pain she was in, Kayli wasn't able to eat for nearly a week. We tried milkshakes, smoothies, nutritional shakes...none of it was really appealing to her but better than nothing. Her mouth feels MUCH better now, after 2 weeks...but she ended up losing about 15 pounds. Not a fun way to lose weight, but she feels good otherwise and has gotten lots of compliments on how good she looks. I think she is loving it a little. Last week though, I was trying to get her to eat as much Burger King, McDonalds, Taco Bell, etc whatever else fattening I could get her to eat... why you ask? She had a PROM DRESS to fit into!!

You have probably seen us mention Ryan in our previous posts. We just adore him...and he adores her. Ryan and Kayli have been officially back dating now for almost 3 months. If you remember, Ryan was her date for Homecoming back in October, when we realized she was sick. He has stuck around and been so amazingly supportive through everything, offering her words of Praise and encouragement. They are adorable together. Ryan celebrated his Senior Prom last night, with Kayli as his beautiful date. Seemed so ironic, when Kayli's Homecoming dress being too small suddenly is what caused us to realize there was something wrong...and 6 months and a new liver later...her prom dress was suddenly too BIG. We were a little disappointed...but didn't seem like quite the crisis as the Homecoming dress fiasco. They had a WONDERFUL night, enjoyed time with friends, took beautiful pictures, and enjoyed an annual breakfast this morning with their band director, Jack Allen and his beautiful new daughter Gracie. 

I took over 300 pictures, so its been very hard to sort through and pick out just a few... maybe I will just create a slideshow. On Wednesday, Kayli & I will be leaving for Disney World with the Oak Ridge High School band. Four days, 100 teenagers...Diney theme parks...yeah we'll see how this goes! :) 

By the way, medically speaking, other than the mouth ulcers, Kayli is doing great and her liver seems to be functioning perfectly.

March 19, 2010

It has been such an uneventful month, REALLY! We are enjoying the end of Spring Break, a boring Spring Break for the girls. We did nothing and went nowhere. I worked all week, and that left Kayli to babysit her sister and do chores. No exciting vacations or trips...though we did start off the week paying a visit to her softball team at a tournament at SMGSL- ran into lots of our good friends who we've missed!!

So quick update. Kayli is doing well medically. She had a doctor's appointment this past Tuesday, and everything looked good from what I understand. I was working, so Mark took her. The doctor released her to play her saxophone again, and they also reduced her clinic visits to ONCE A MONTH!! She does still have to get labs drawn weekly, so they will be keeping a close eye on her bloodwork and med levels. But the once amonth for clinic visits is pretty spectacular news!! So really there is not much else new to share there. Her scar is healing nicely, and if you bump in to her you can ask to see it- she shows it off pretty proudly.

Some bits of news on Kayli- she will be going to the Senior Prom in April with Ryan. Has her dress picked out and its gorgeous. Its being altered right now. Fit like a glove, just needed to be shortened by about an inch. I'll post pictures after the big event. Her and Ryan are both so excited (and mom is too a bit?).

Kayli also will be participating in a pageant!! National American Miss. Sounds very interesting- scholarships and such. She was recomended by a friend, and received an invitation to an "Open Call" (which I am sure LOTS of girls get). We weren't able to make it, but we faxed in her application and picture, they called her for an interview, and they accepted her. She will go to a callback next week, where they will teach them modeling and go over what to expect. Then in June she will attend the state pageant in Houston, where she could possibly advance to Nationals. She is really excited. She and her sister both did glitzy beauty pageants when they were younger, we still have a garage full of tiaras and trophies to prove it...but this one seems to be a little different. Can't wait to see how she does with this.

She and her sister are still both doing really really well with their Cinderella rehearsals! Kayli as a servant and a townsperson has some key parts and does a couple of really neat dances. The servant dance is especially moving to see, lots of twirls and turns, and she does so well. Truly inspiring to see...so if you want to see a FANTASTIC show with a live orchestra and wonderful costumes- come see Cinderella. CYT is offering a special price of $8 per ticket if you act now and order directly from us before April 1st!!! After that you can order tickets online at http://www.cythouston.org/ at pre-show prices.

HAPPY LIVER-versary!!!! :)

I feel so so bad I have not gotten on to update in almost a month!! But that is how things have been going. I have lots of pictures and news to share. Which will mean a re-post this evening. Sorry!

But I will say that this past week on March 3rd, we celebrated what we are calling Kayli's 2 month Liver-versary! :D  Two months have passed a since a new liver brought her new life. We continue to Praise God and the medical team and the donors family.

We had one little scare last week, when Kayli's labs came back showing elevated liver function tests and creatinine levels. We were told to go have her labs drawn again to verify. We did a re-draw 2 days later and the labs were back looking normal again. Cause? Kayli went on a "self-diet" and didn't eat for nearly 2 days, and wasn't drinking water like she was supposed to. When we discovered this we began regulating her diet for a couple of days during the lab re-draw, and the 2nd set of labs were fine.
At her last appointment with the dr this past week, her nurse, Makita, showed her on her chart that Mom and Dad actually say the things we do for a reason... "Here's what your numbers looked like as your new liver has gained more and more function and is now working full force...here is what your numbers looked like when liver is working at 100% perfectly...here is what your numbers look like when you don't drink water or eat for 2 days...here is what your numbers look like as your liver is recovering from you starving it for 2 days...see where I am going with this???? Kayli, "OH". She got it then finally. Like any normal teenager she doesnt want to believe mom and dad until it comes from a "higher authority" LOL<

SO now that she understands that eating right and drinking plenty of water make all the difference in how she feels...all has been going well. Now we are focused on grades, school work, and Cinderella!!!

So GOOD MORNING and have to run for now, but hopefully I can get on this evening and give an even better update WITH pictures!!! :D

No news is good news...

I hope you all feel the same way! I actually have nothing new medically to report at this time! Kayli had labs drawn Tuesday morning but we did not receive any calls from the liver coordinator since so I am assuming everything looks great! Kayli has had a busy week at school, and CYT. We are all trying to adjust back to a school schedule, including not having her ride the bus (infection control...school buses are just ICKY!) and next week we will have the added bonus of afternoon tutorials for her classes (she has ALOT to catch up on). Saturday she and her sister will be auditioning for CYT's Cinderella, so we will let you know how that goes!! Keep your fingers and toes crossed!

Another milestone...

Tomorrow is February 3, 2010... Kayli's new liver "monthiversary". On January 3rd at 6am, her new liver was fully in place, and now tomorrow February 3rd...she will go back to school! ONE MONTH, can you believe it? I still cannot. I guess I can, but it still seems so surreal to me, ALL of it.

Kayli is still recovering super smoothly. No signs of rejection, her liver is working perfectly, and they have lowered her anti-rejection medication dosages. Today at her doctors appointment I looked at the chart of her numbers, liver function tests and all, you can just see the amazing...no, astounding progress of the new liver right there in black and white. She feels great, blood cell counts are normal, liver function tests...everything. It was just a joy to see, so please excuse me if I ramble on. So tomorrow she will return to school. She is ecstatic. She and some friends celebrated with an afternoon get together at Red Robin's. Mom and Dad are little nervous, and have been fretting over the small details to make sure she is fully covered tomorrow. We shall see how it goes...

Kayli made a triumphant return to CYT last week. At the Winter Showcase she performed a comedic monologue for her Advanced Drama class. Kayli had originally signed up for Advanced Dance, but the first night of winter classes, November 12, was the night she woke-up in the middle of the night with a GI bleed, hospitalizing her for nearly a week (2nd hospitalization). When she returned to CYT, we transferred her into the drama class as it was less impact on her body since she was recovering from the TIPS procedure to her liver. She was given the monologue and a part in a 3-person skit. When recovering in the hospital after her transplant, Kayli went over her monologue, but felt it best to limit herself to the one act. Showcase was January 28th, and Kayli was determined to perform her monologue. She stepped onto the stage LESS THAN a month after her liver transplant, seemingly in perfect health...and received a standing ovation from all of her beloved fans before she even began. Though she was overwhelmed, Kayli performed her monologue with confidence, skipping a few lines that NOBODY noticed or even cared. We are just so happy to have her there, alive and happy and healthy!!! The video is here, and as one well wisher so properly calls out...she's a miracle!

Next weekend she and her sister will both be auditioning for CYT's production of "Cinderella". Kayli has picked a song that has a new meaning for her after having been sort of "quarantined" over the past 3 months, 'Part of Your World' from The Little Mermaid.... trust me, I WILL be crying...

Back to school....really??? :D

Kayli had her weekly appointment with her surgeon today. Her numbers are looking fabulous! All of her liver function tests and on the downtrend and in a wonderful way! She is feeling super great and has even been out and about normally. She is continuing to have labs drawn every tuesday and thursday. Dr Mieles has reduced his direct appointments with her to Tuesdays only, but she still has labs drawn on thursdays. More fabulous news today...

Dr Mieles said that at next Tuesdays appointment, he will write release orders for her to go back to school!!! CAN YOU BELIEVE IT??? I am in complete shock. It is so amazing, most people spend months in the hospital following a liver transplant, and yet my child will probably be going back to school almost exactly a month after having a LIVER TRANSPLANT. It still seems SO surreal to me. I PRAISE GOD every moment for taking care of my beautiful daughter, how brave and strong she is. I used to complain about her stubborness...now I am thankful she is so strong-willed. I only pray now that God will continue to keep her strong and healthy, will keep or family strong enough to overcome our financial struggles that have resulted from this situation, and keep Kayli focused on not only her continued recovery but also her educational growth...(schoolwork, grades, etc LOL) as well as her continued growth in theater & performance arts!

Thank thank thank you all so so much for all of your love, support, prayers, words of encouragement, and all that everyone has done and CONTINUES to do. May you all be very Blessed. We love you all and know that we still need all your love and prayers! Will continue to post here Kayli's success stories! :)

Also- because it is a cause that is important to Kayli and to us, her school- Oak Ridge High School, will be holding another Replenishment Blood Drive in her honor. Please see the info at the link below:

http://orhs.conroeisd.net/ORHS%209th%20Grade%20Campus/pdf/Kayli_poster%20Oak%20Ridge.pdf

CYT Houston's Seussical Jr RESCHEDULED!!

This past weekend, the show that Emily was in had to be cancelled because of a malfunction in the fire curtain at the theater. The kids were all pretty disappointed, they live for the performances. Not to mention, the show was amazingly good and LOTS of people missed out on it. Staff had to turn MANY very disappointed children and families away at the door, it was heartbreaking.

Good news, the show has officially been rescheduled, and we hope to fill the theater this time! The kids are THRILLED they will get to perform their show again and would love to see you there! I can't tell you enough how wonderful the show is. Contact CYT Houston to order tickets, and be sure you tell them you heard about it from Kayli Curda. Visit their website at http://www.cythouston.org/ or call the box office at 832-338-5869.

Emily Lou Who, Kelyn Lou Who, & Paige Lou Who

HA! HA!

Emily Lou Who gets a hug from The Grinch!

First week at home...

Well Kayli continues to dazzle us all with her amazingly quick recovery from her liver transplant. A LIVER TRANSPLANT...it sounds so weird for me to even say out loud. She had her first follow up appointment last Thursday where they took out about half of her staples, and adjusted her medication dosage. She had another follow up today, they drew labs and took out her remaining staples! I am waiting for Mark and Kayli to get home so that I can see how she looks. I didn't go today because I am sick. I am sure I only have a head cold and its certainly because my body is tired. Hopefully I will be able to kick this pretty quickly so as NOT to get Kayli sick, and I am trying to confine myself to my room so I do not spread my germs around the house.

Kayli has been pretty active in her week since being home. She has gone to the mall, Wal-mart, Target. She hung out up at the theater with us for awhile as we have have been busy with Emily's theater production...which is completely an amazing show!! (You should all see it and yes I am shamelessly plugging the show!!) Sunday evening she even went to dinner with the cast at Red Robins and had so much fun and realized how much she misses all of her CYT friends! She had her friend Cristine spend the night and yesterday they went to Market street for lunch and then met up with some other friends to see the movie The Lovely Bones, which apparently they all hated. :( She looks beautiful, and it is just so hard to believe what she has been through in the past 2 months.

She will continue with her Homebound schooling for now, which starts again today. But the doctor noted today that there is a POSSBIILITY he may release her to go back to school sooner than March 1st IF she continutes to take care of herself and improve the way she has so far.
This week she will be able to start back to CYT classes and next week is the Showcase, where if all goes as planned, Kayli will perform in a skit and a monologue on stage. :)



                                                                                      --->Kayli & Cristine hang around the house.

            Band friends Liz, Synnamyn, & Leanna all pay Kayli a visit and bring her Taco Bell.

Kayli stops in at the last Seussical dress rehearsal to tell her CYT friends to Break A Leg!

...and gets a much needed hug from her favorite dance teacher Miss Ruth...who is now ENGAGED! :)


She also got to spend some time with her her close friend Rachel Adamo. :)

Red Robin's was a ton of fun, and a ton of people...:) Kayli took off her mask just long enough to enjoy a coke and a burger...



...and share a beautiful smile with her favorite drama teacher Mrs Julia!!!

What's next for Kayli? (& us)

As you may have read earlier Kayli came home today. She was so glad to be home, one of the first things she did was take a shower. She hung around the house this afternoon and then had her first visitors here at home. Tonight she is in her own bed, and hopefully will get some good rest.

The next few weeks will be a tough adjustment for Kayli (and us). She is on a pretty strict medicine regime, has a busy doctor appointment schedule, and has alot of social limitations she has to adhere to. The only physical limitations for now is she cannot lift or pickup anything over 15 lbs for the next few weeks and no running. Everything else is at her comfort level. Of course no sports or intense dancing for awhile. But as far as exercising, going up and down stairs, all other activities are as she can tolerate. She may be able to go back to softball as early as next year, but this will totally be up to her. Marching band will be a go by the time next marching season comes around. Her liver coordinator, Mikita did say it might be a few weeks before she can play her saxophone again, will just take her time to get used to blowing strong, solid air through the horn again, not really a physical limitation.

Social limitations will be the hardest for Kayli. She does need to be careful for the next few weeks, (with it being flu season), because of her suppressed immune system, she is more likely to catch illnesses. So for the next few weeks she will need to wear a mask when in crowded areas or around sick people, at the mall, wal-mart, etc. She also cannot clean up after animals (I know that breaks her heart), but she can also not love on her sweet boy kitty Lancelot for awhile. Eventually she will be able to, but for the time being he can't sleep with her, which is one of the main reasons she was ready to come home. (She cannot lift him anyways as he is over the 15lb weight limit LOL) I laugh but it's kind of sad for her as she loves her kitty alot. Kayli will be able to participate in CYT, since a large portion of the kids involved are home schooled, but she will not be able to go back to school for awhile. The doctors have written orders for Kayli to stay on the Homebound program through school, and we will meet with the school and homebound coordinator again on Thursday to go over things.  She may be allowed to go back to school as early as March 1st or possibly April 1st depending on her progress. She said her goal is March 1st, and the social aspect of not going to school is hurting her worse than anything at this point. She hasn't been in school since the end of October, and that more than anything I think as been the hardest for her. It could really play a big part in her recovery. We talked to her today about the possibility of repeating the 9th grade if the Homebound teachers cannot get her caught up, and she almost burst into tears. I only pray that doesn't happen.

Her medications and doctors visits are pretty crazy right now. We will be traveling to the medical center twice a week for several months, every Tuesday and Thursday at 8am, and Kayli will have labs drawn each time. After 6 months that may decrease. The doctor said eventually, over the next few months/years, they will wean her down to 2 probably 3 medications. But for right now there is about 8 different meds she is taking. The two main medications she HAS to take, the anti-rejection drugs, are not fully covered by our insurance, therefore our co-pay is $250 for a month supply...each. The rest of the meds are going to run about $100 per month total...so while $7200 per year is not quite as bad as the originally quoted $10K, it still puts quite a damper on the budget, a big one. Alot of changes will need to be made. I will be going back to work tomorrow, which is kind of hard as a mother- I want to be able to remain home and care for my child...but I do not have benefits with my job at this time and have already missed alot of work. Mark does however, so he will be filing for FMLA, and he will remain home with Kayli as long as he can...until he exhausts his vacation and sick time which he has a total of about 6 days worth of sick time and 22 days of vacation, and will get us through the first month. After that, we may only have a couple of weeks gap until she goes back to school, as long as she is allowed to go back to school March 1st as suggested. However, if an illness occurs, we're kind of stuck and the also an adult has to be here when the Homebound teachers are here.

All I can say is, at this point...we are just grateful for the precious gift Kayli has been given, and somehow, someway the rest will work itself out. We have faith that the Lord will continue to Bless us, protect us, and guide us through this. Please just continue to pray for successful healing for Kayli, and strength for our family.

I think she is ready to go home... :)

FYI- she did accomplish both of these goals today!

While she had many wonderful nurses while at Children's Memorial Hermann, Heidi was by far her favorite. (Heidi was also the nurse that played hangman with her last week)

In tha car...GOING HOME! YAY!

Her first visitors at home, Kayli's friends Erin & Paige and their parents brought an awesome meal of PIZZA & hot wings!! YUM!!! We ate, watched American Idol, and looked pictures from my Senior year of High School so I could show the girls what a Sadie Hawkins dance was. :)

Kayli's "pharmacy". There are pills in every box except tonights bedtime, and there are at least 12 pills in both the yellow and purple boxes...the 3 bottles to the right are additional meds that are "as needed".

KAYLI COMING HOME!!! :D

Before I even had a chance to get down to the hospital today, Mark called and said that the doctor had removed Kayli's central line, and they were packing up and on their way out...of the hospital!! SO THRILLED!! He said they were going to stop on their way home and grab some Taco Bell for lunch...HA HA! I told him to make sure and take pictures!

I am so happy that I will have my family under one roof tonight. PRAISE God!

*****KAYLI IS HOME*****

starting out the week

Kayli got good news this morning. Her liver function tests are looking much better, and definately moving in the right direction. They have upped her dosages of steroids. The biopsy over the weekend confirmed that the slight rejection she was experiencing was simply due to medication levels. Dr Mieles said that he would be more worried if she wasn't showing any rejection, that would mean her immune system was not working at all. This rejection just shows that her immune system is stronger than thought and they will just need to carefully watch her medication levels to ensure they keep her immune system suppressed. They hope to be able to release her from the hospital tomorrow, Tuesday. She is doing very well. This morning she got up, cleaned her hospital room, made her bed, and even had a tiff with a nurse regarding her medication schedule (by the way she was right and the nurse was wrong). She is something else... LOL
She had a wonderful Sunday, with very welcome visitors, and today she was in a much brighter mood. It also may have helped that she actually slept last night. They have prescribed her 5mg of Ambien to take at bedtime while in the hospital as she wasn't sleeping well at all. She realized last night that it's not good to try and fight it once you take it.

Emily adores her big Sissy! :)

Kayli and her amazing friend Ryan, he has definately helped her get through this. He's adorable, he was afraid he would hurt her.

small bump in the road

We have had a little hiccup this morning. Kayli will not be going home today. One of the doctors came by a moment ago and told Kayli and I that her labwork this morning showed elevated LFT's, liver function enzymes. This is a small beginning sign of rejection. They have a feeling it is because of the lowered medications dosages over the past couple of days. Her platelet count is also low. So, today they will put her back on IV fluids, she will be receiving another blood transfusion (platelets), and they will be doing a liver biopsy later this afternoon to try and determine for sure what is going on, and hopefully they can catch it early enough before the rejection goes into full swing. She is understandably upset- but in hindsight I am relieved they did not send her home yesterday or they would not have known this was happening...now just to convince her of that.So, at the earliest she will be here til Monday. Please keep her in your prayers.

Friday morning, Kayli's friends Rachel and Elijah paid her a visit with I-hop french toast in hand! She loved it! Rachel's snapped a photo- even 5 days post liver transplant surgery she looks beautiful!!

Wed-Fri

So it's been a couple days since I specifically updated on Kayli. She is an amazing child and she has everyone here completely in awe. She has such a strong will to recover and be normal! My days are starting to blend together, so I have to keep reminding myself what has happened and when...

So on Tuesday evening Kayli moved out of ICU. Wednesday, she continued her amazing recovery. She was able to order real food for breakfast, and had french toast. She really enjoyed it and ate 2 whole pieces!

Physical therapy came by and took Kayli on a short walk, they went up and down a flight of stairs!! Kayli did awesome as usual, and even walked at a normal pace. It was a very good morning, though after her trip up the stairs she was a bit tired.

Just before lunch she received a surprise visitor, Daddy brought Emily to see her big sister!! This is the first time they had seen eachother since we got the call on Saturday that a liver was available. Emily has been so worried, and hasn't seen her sister for herself, so this was very good for both of them. Daddy took her to school that morning, but she was not really intrested in going school, so he picked her up shortly after dropping her off for the special treat of spending the day with her family. Sometimes it is easy to forget how this all has affected her. We have done our best to try to keep up with her and make sure she does not miss any of her theater rehearsals and such, but she is such a sweet, understanding child that its easy sometimes just to shuffle her to the side which is a horrible way to think about it, but it happens. Bad mommy, I forgot to get a picture of my babies together, but here is a picture that Emily took herself. The bear on the left is a bear that Emily picked out and stuffed for Kayli at Build-A-Bear during 1 of her November hospital stays. When you press the paw, it's Emily's voice that says "Get well soon Sissy, I love you". The bear on the right is Emily's Aeropostle bear that Santa Claus brought her. Emily arranged this scene, and apparently Aero bear is reading the puppy book and Kay's bear is taking notes...just a guess. :D

Wednesday evening, the nurse washed Kayli's hair for her, and she began to feel a little human again. She changed out of her hospital gown and into a t-shirt, and put on a little eye make-up. She was then visited by Uncle Robert, Aunt Claudia, and her cousins Joshua & Justo. Mark said it was a nice visit, but Kayli was definitely tired after such a busy day.
I missed all of Thursday, as I stayed home to prepare our house for Kayli's homecoming and run some errands. Lancelot, Lily, & Safire seemed to enjoy me being home, and I took Lance & Lily to the doggy/kitty day spa for baths. They came home looking and smelling GREAT and both seemed to even feel special! Safire didn't go because she is short-haired and doesn't shed, and seems to keep herself very clean. For those who don't know, Lily is our dog, Lancelot is Kayli's 22 lb maine coon cat and Safire is Emily's new little kitty she got for her birthday in September.
Mark said Kayli continued her amazing recovery all day on Thursday. She walked several times, was doing pretty much everything on her own, and had put on make-up again. Dr Mieles removed one of her wound drains from her abdomen and they took her off of IV fluids and cut back on some of her medications. She had visits from our friend Robin S and Greg (Aunt Sunny's brother). They had a good day.

Today is Friday, and though they had predicted Kayli would go home today, the doctors decided to keep her just one more day as a precaution. Nothing wrong with her at all, but they changed one of her medication dosages and needed to keep her one more day to monitor how her blood levels respond to the dosage change. I'm ok with this, though she was disappointed- definitely better to be safe than sorry. Dr Mieles certainly didn't want to keep her, and did all he could not to, but in the end it may just have been for the better. This morning she was visited by her great friends Rachel and Elijah. You may remember them, they were at Dickens on the Strand with us back in December. They brought Kayli a tasty breakfast of french toast from I-Hop, Kayli's favorite! She scarfed it down apparently!

Kayli's nurse for the past 3 days has been Heidi, and she is awesome! She was actually Kayli's nurse one day back during her first hospital stay in November. Today, they played a round of "Twilight Hangman", and it really seemed to cheer Kayli up. They had fun today, and as you see from the pictures Kayli is now an expert on all of her monitoring equipment and can connect and disconnect as she needs to, and does so quite often. This evening is staying very quiet. Greg and his fiancee Carley are here now visiting, and its been a really nice and relaxing visit. They brought a movie that we all watched together and now we are relaxing sharing band stories! :)

Excited about going home tomorrow! Everythign is looking great right now, Kayli looks so wonderful and is feeling pretty good.

I have had many friends, family, and supporters ask "what's next for kayli?" Tomorrow I will post an update and try to answer those questions. Thank you again for all of your prayers ans well wishes.