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Monday, October 1, 2012

What a Difference a Year Makes

  We just celebrated Thomas' second Birthday and I have to tell you that this year, everything was so different for me. Last year, I had in the back of my mind that this might be my only party with my precious son. This year, I couldn't contain my excitement and joy when planning his party. I love seeing all my friends with and without children gathering to celebrate the best year ever. His first Birthday party had a barn/farm animal theme and I had photo invitations made at JCPenny's,and I HAD to have hay for the photo shoot. I went to a local feed store and asked to buy a couple of bales of hay. The owner said she didn't know me and apparently there was some sort of hay shortage last year due to the drought. I had no idea. I was not prepared for this lady to refuse me hay, so I just lost it. I had this picture in my head and I had to make it happen. I was honest and had told her I wanted it for my son's B-day photo shoot. She was caught off guard and asked my why I was so upset and I told her my dilemma. She ended up selling me the hay and I ended up taking it right back to her after the photo shoot. So, I guess I ended up "renting" the hay. At his party, he had to be in my sight or next to me the whole time last year. I was in such a state of fear and the unknown, what would my future hold?

This year, completely different for me. I still went all out with the theme of airplanes, but I was relaxed, I trusted that Thomas was OK running around like a crazy man and smiling all night. I visited with friends and family and just totally enjoyed it, enjoyed my son, enjoyed my life, enjoyed the sounds, the smells, the mistakes, the things I forgot, I soaked it all in. At the end of the night, as I was laying on the floor exhausted while wonderful friends (the Montoya's and Smiths) were probably sweeping floors and moving tables back into the appropriate Sunday School classrooms, my sweet, sweet son came and layed directly on top of me, kissed my lips, snuggled me, giggled, and then went back to playing with his friends. I had tears, tears of mommy bliss, this is what makes all the trials, training, and frustrations of rearing kids worth it. I would go through a hundred temper tantrums just for another show of love like that. There is no greater blessing than that of a child, any way you come to acquire a child, they are such a blessing. These feelings always make me reflect on two things: Did I do this to my parents, did I just love on them for no reason, did I look at them the way Thomas looks at me? Did I make them feel the way Thomas makes me feel?, and I always think about how I view other people. I get convicted quite often. Do I judge someone that gets pregnant out of wedlock, or someone that isn't financially ready for a baby that gets pregnant anyway? To be honest, I often come back to my beautiful niece Karina. I mean, I can't imagine my life, or anyone in my familys' life without her. My sister wasn't married and Karina was half African American, but she was ours and she was perfect. I remember how her birth healed so many wounds. So many things had been said that were so ugly and nasty to my sister, but I was there, I saw the way my sister looked at her baby, it was all well worth it. I learned something important at a young age, IT IS NEVER THE BABY'S FAULT. I never understand  how people can not want a baby in this world. They are all such gifts. All the anger and hatefulness that had plagued my sister's pregnancy was suddenly gone without a trace, once people layed their eyes on Karina.

     One other thing I have learned since having a child. As most of you know, I used to be a teacher. So many times during parent/teacher conferences, a parent would ask me, "Do you have children?" This would always infuriate me and I would say something stupid about my degree, blah, blah, blah.  Well, I was reflecting the other day and realized what those parents meant, I understand now. They were really saying, "This is my baby, the thing I love more than anything, I would do anything for him, are you doing everything for him, are you treating him the way I would treat him? It is a love like no other. I posted on my Facebook account that loving Thomas has brought me closer to God, He had to love me so much to let His only son, Jesus die on the cross for me. It is so humbling. I kinda giggle now that I have friends that are expecting for the first time and they talk about how their life isn't going to change that much after the baby arrives. I laugh at myself because I used to be that person. But, there is no way your life won't change because you learn what love really is, there is no way anyone can explain this love to you, it is simply amazing.

     Thanks for reading! Still no word from my donor family as of yet, but I'm still praying and hoping that they contact me. I have a strong desire to meet them. I will keep you posted.

Thursday, September 6, 2012

Super Six Months and Donor Letter

I can hardly believe it has already been six months since my transplant. I cannot even begin to tell you how happy I am and how wonderful I feel. I went to my six month check-up and everything looks wonderful. I am still struggling with blood sugars some time, but I have an Endocrinologist I am working with in Clear Lake for this issue. I figure both my parents are diabetics, three of my medications cause a spike in blood sugar, and I am still overweight. I am struggling with finding time to exercise all the time now that I am back at work full-time, but I haven't given up. I just look at Thomas sometimes, and I would rather do stuff with and for him, but I know that the best thing I can do for him is get in the best shape possible. I am down to just the following medications:  Prograf, Cellcept, Magnesium, Calcium with Vit D, Protonix, Ursodiol, Metformin, and Bactrim! I feel like life is getting back to normal, I occasionally wish for a moment where I don't have to think about so many things, like what type of food will be served at a party, what way will the food be served, will it be a lot of people in a cramped space, what kind of water will we be swimming in, do you have well water, etc.. It can get overwhelming sometimes!  I am so very thankful for the past six months that my precious donor has allowed me to live to the fullest. Below is what my letter said, minus a few really personal things, I hand wrote the letter sent to the family as well as enclosed pictures of me with my son and family. Please keep praying that they will want to meet me some day.

To the Most Wonderful Family I Have Never Met,

     I have to admit, this is one of the hardest letters to write. Why?  Because it is the most important letter I have ever written. I don't know words good enough, honorable enough, thankful enough to describe how I feel about your son and your family.  What do I say to the most selfless, loving people I have never met, but I feel so bonded to. I received your son's liver and on February 23rd, my life forever changed. I received the greatest gift anyone has ever given me besides God's gift of Jesus Christ.  While the phone call I received that night made me rejoice and get on my knees thanking God for this miracle, I realized at that moment that your family just received the most devastating news because you lost someone so special to you.  I wish I knew his name, his interests, what he looked like, and I really wish I knew everything about him.  I imagine him as a son, brother, uncle, nephew, friend, grandson, boyfriend, cousin, and I know he played so many roles in all the lives he touched. 
     I figure that you want to know a little about me too. I was born and raised in Pasadena, Tx. I have been married to my husband Paul for the last four and a half years. I have an older sister, Patricia, and a younger brother, John. I am a cousin to many wonderful people that helped me so much during my journey, I am an aunt, a daughter, a granddaughter, a niece, but my most prized role is that of being a mother to my son Thomas John Bennett.  He is 22 months old at this time and I am also a mother to my twin angels in heaven.
     When I found out my Autoimmune Hepatitis had turned into Cirrhosis and then liver cancer, I felt like the wind had been knocked out of me. I had such strong faith, I believed God would heal me with a miracle, I just didn't realize my miracle would happen through your son. He is my miracle. Every second after my diagnosis suddenly became so important to me. I wanted to leave such an impression on my son.  I wanted to make lasting memories with him, but mostly- I wanted to LIVE. The only reason I have a future to raise my son is because of your son.  Thank you, Thank you, Thank you! Those two words just don't seem like enough.  I wish I could hug you and meet you and show you just how grateful I am.
     I think of your son every single day.  I live my life different now.  I desire to honor him and his precious life.  I just can't thank you enough.  This whole experience has changed every aspect of my life because I am now a better nurse when I go to my job, I honor your son.  I am a much better wife and mother- I want to be more selfless like your family. I eat better, I exercise regularly now, I want you to know that I am taking the best possible care of my liver that I can.  I have followed my doctor's orders to the tee!
     I would love to meet you, if you would want to meet me and my family.  I would love to know his name, to be able to speak it, to be able to tell others about him and call him by name.  I am enclosing pictures of my family and I hope you are at a point in your grieving where we can have contact. 
    I often think about if I was put in your shoes, would I be able to make the same decision if Thomas was the one that would be the donor.  I know I now would make the same decision you did because I know firsthand how precious a gift an organ is.  I look forward to hearing from you soon.

Love,
Katrinia

While typing this up, I realized there are places I could have improved the letter, but I am happy I completed it and sent it off.  I am currently thinking about a way to honor him every year on February 23.  I never want him to be forgotten. 

A few things that have happened lately that make me smile.  Today, as I was rocking Thomas to sleep for his nap, I kissed him on the face after I thought he was asleep.  He opened his eyes and said,"One more Momma," this melted my heart, tears started flowing. I am so happy to have moments like this. I didn't just give him one more kiss, but several more kisses. 

I am sick of all the election stuff going on right now, because I think what I have realized is that change really does start with myself. I want to stand up for what I know is right. I am tired of hearing filth every where I turn.  What has happened to modesty? What has happened to people feeling ashamed of bad behavior? Why is it OK for people to make excuses for everything they do wrong?  Why are people so mean? I feel like I can make a change by making my voice heard more often, but I don't want to hurt others in the process. I hope I get better and stronger every day.

On a total different note, I watched the series New York Med for the past couple of months, and if any of you were able to watch this show, I loved it. It was so touching. I cried every time I watched it. They showed a liver transplant and everything the man that received the liver felt, struck a cord with me.  His son told the doctor before his dad was wheeled off, "Please take care of my hero." I just balled.

Thomas' Birthday is coming up on September 30th, my baby will be two. It has flown by, but every second of being his Mommy has been wonderful.  He taught me all about a love I never knew before.

Until next time.

Monday, July 16, 2012

Something Old

So, I know it has been too long, sorry for the hiatus. I need to finish telling you about the car situation. The weekend we were going camping (Memorial Weekend), after I had loaded the back of the van perfectly, we left bright and early Saturday morning and wouldn't you know it, just a few blocks after filling the van up with gas, all four brake light warning indicators thingies on the dashboard light up. After my last experience with the brakes going out in the FJ, I was not taking any chances. We turned around, threw everything in the back of the truck hastily, and then filled the truck up with gas and finally headed out. On Tuesday morning after Memorial Day, we took the van to a Chrysler dealership to get serviced because after all, I had bought a WARRANTY! So, they fix several problems on the van because each time we take it in, the deductible is the same no matter how many things they fix according to my WARRANTY PAPERWORK I had from my signing day at the dealership. So, they call on Friday that everything is fixed and it is going to be $800 ish because we don't have a warranty. I bring my paperwork and show them, so more investigation is needed. We call the dealership and leave messages, talk to the wrong people, and wait. We wait, wait, wait for a week and a half. I felt like they were holding my van hostage. The dealership "forgot" to file the proper paperwork for my warranty, so indeed I did not have one, even though I really did pay for one. Okay, so now they were going to file the papers and we would have the warranty and then we could finally go pick up the van. I WISH! The warranty place confirmed that the dealership did file the paperwork, but had not sent the money and it usually takes 60-90 days for the dealership to send in the $$$ because they send in a bunch of them at once, so we would have to wait that long for them to pay. And, this warranty was different, so we would always have to pay up front and be reimbursed (only $200 out of the $800 was going to be reimbursed). ENOUGH ALREADY, we cancelled the warranty, the dealership came down $100 on our repairs and we finally rescued the van after a few weeks!

But, in all the this, the nicest thing happened to us. A wonderful lady and friend I work with loaned us her extra car. Let me tell you how sweet she and her husband are. I was at work with her and her husband drove the car to our job. They live in Brookshire, which is about an hour away. I had never even met this wonderful man and it touched my heart that someone would go that far out of the way for me. It was such a blessing to be able to continue my normal routine with Thomas and work. Thank you so much Cindy!

Now, on to the old thing I found. I found my BUCKET LIST from before I was even married. I wish I had dated it, but I know it was before I married Paul. Here is the list:

1. Kiss my love on top of the Empire State Building
2. Do travel nursing for one year.
3. Go back to Africa for medical missions
4. Go to Hawaii.
5. Swim with the sharks
6. Sky Dive
7. Learn to ski
8. Adopt a family of orphans
9. Provide Christmas for a needy family
10. Stop caring what other people think especially strangers
11. Pay for Karina's college
12. Pay for Timmy's college
13. Complete a triathlon post transplant
14. Ride a horse bareback
15. Go to Australia
16.  Keep in touch with old friends (Thank you Facebook)
17.  Save someone's life
18. Lasik eye surgery
19.  Get a tattoo
20.  Start a research organization for Autoimmune Hepatitis
21.  Thank Jesus daily for giving me another day
22.  Go to Paris
23.  Go back to Honduras
24.  Catch a shark deep sea fishing
25.  Go to a World Series Game.

Those were the things I wanted to do, only a few have changed. I can no longer get a tattoo, it is part of my post-transplant rules, they also strongly discourage out of country traveling, but for the most part, I would still love to do these things.  I would add to the list:  Meet my donor's family, be a Christ-like role model to my children, and to be a blessing to all the people I meet. Life is good, no, life is great! I hope to be back soon blogging more often!

I go weekly or sometimes every two weeks for labs. Everything is looking great so far and I feel fabulous.

Friday, June 1, 2012

Let's Play Catch-Up

I can't believe I didn't blog at all in the month of May. So much has happened. The last time I blogged was on Paul's Birthday, which ended up being a lot of fun.  We had homemade chilli for dinner and a big cookie cake for the birthday festivities. Thomas loves the Birthday song and he had fun hanging out with his cousins Hannah and Mason. The next morning I went to the Endocrinologist and guess what???? No more insulin for this chica! I switched to Metformin only the following Wednesday, praise the Lord!

     So, the next big thing that happened was my cousin Karen had a birthday celebration. Her actual bday is May 9th, but we had a party on May 6th at her sister Deborah's house. I made Karen a "recreation" of a cake I had made for her when we were in elementary school when she had the chicken pox. I decorated it with Red Hots, just like the good ole days. I can remember being so excited to give her this cake when we were little, I love that we grew-up across the street from one another, that is just so cool. Anyways, her mom made the real cake which is a made-from-scratch chocolate sheet cake. I am serious when people come to birthday parties in our family based on the fact that Kay will be making this delicious dessert. I still get a little emotional when I look at Karen, I just think she is the most beautiful thing I have ever seen, especially since I know her inside out. She has lived her entire life helping others and she is leaving such a legacy. On Wednesday, we celebrated her real birthday at our special place, Jimmy Changas. We had a blast and this time I brought an ice cream cake that we shared with the wait staff.

This shot was taken at Karen's First Bday Celebration. I Love this kid more than I knew was possible.

Doesn't she look beautiful and happy! I love her!
Download photo.JPG (132.4 KB)
Thomas loves the green sauce! Not a fun diaper later that night!

So, the next day was my appt with my cardiologist. After a few tests, I found out that my heart is HALF the size it was before transplant. I didn't even know it was so enlarged. And, all my lung pressures were back to normal, so it was a happy appt and I left with a sense of thankfulness! I left there and went to a new Bible Study I was attending with women of all different ages at my church. It was such a great time and I made new friends and spent time with old friends. We laughed a lot about growing-up, marriage, kids, funny church moments, and we really bonded. I love my church so much.

On May 12, Thomas and I went to Noah and Charlee's bday celebration. We only stayed a few minutes because I suddenly noticed a rash all on Thomas' feet, hands and mouth. You guessed it, he had hand, foot, mouth virus. So, no church for me on Mother's Day, but really, on Mother's Day I loved being his momma and taking care of him when he was sick. Mother's Day at church is still hard for me, I am always afraid they will ask mom's to keep standing if they have 1 child, 2 children, 3 children, and so on because I have seen this before. What would I do? I can't help but think about my precious boys in heaven on Mother's Day. I wonder how big they would be and what their little personalities would be like. I look forward to our reunion some day. I am so glad I know where I will spend my eternity.

For two hours on Mother's Day, Paul and my dad watched Thomas while Karen, Deborah, and I hosted our first annual Mother's Day Tea at my house. We had a blast. I stole the idea from my friend Becca, who threw the coolest tea party themed birthday for her daughter. We didn't allow any of our mothers to make or bring anything. We enjoyed great snacks, tea, and good times sharing about all of our childhoods and spending time thanking our moms and aunts for making us the women we are today. We made two crafts and a fan. We plan on doing this more often because girl time is a lot of fun.
This is one of the crazy shots from our tea, we had a really special time together! I love all these women!

     So, the next big thing was my doctor's appt on May 17th, I did my usual labs, saw my Dr. O'Mahony, cried to her tears of utter thankfulness. I thanked her for making such a sacrifice for me, she gives up so much to do her job. I thanked her for all the wonderful staff and the excellent care I have received through this whole journey, I thanked her for always asking about Thomas, she remembers I am a mom and she explained to me why I am still on high doses of immunosuppressants. She said I was YOUNG and HEALTHY, so my immune system tries harder to reject my liver than an older person, so they would have to wing me down slowly. I have not been described as healthy in so long, it felt good to hear.  That afternoon, I had a CT scan and two MRIs. I haven't heard anything about those, so no news is good news these days. At this appt, I received my BACK TO WORK papers and I went to turn those in and check all my passwords at work to make sure I hadn't been kicked out of the system. I had lunch with my good friend Kelly Brautigam in between all of this craziness and she made me laugh so much. That evening, I rushed to my women's Bible Study for our final night together (it was only four weeks). After the Bible Study, I rushed home to my baby and just held him and praised God for all the good things happening.

     After being so happy, a little tinge of sadness started setting-in. I truly love my job, but I love taking care of Thomas full-time even more. I realized that May 23 was going to be bitter sweet. I love my job and the people I work with, but three solid months of Thomas Time was amazing. He has started peeing in the potty and we have a rhythm that I loved. I love snuggling with my baby right after he wakes up, it is the best feeling ever. 

The next day was my last MOPS meeting, so sad, but excited about next year's theme PLUNGE. I love hanging out with these girls. This was also Thomas' last day of Mother's Day Out for the year :(  He loves his "school" so much, but we are looking forward to next year. That evening, Paul's parents came into town and we celebrated their anniversary, Mother's Day, and Jerry's Birthday. We went to dinner at Cheddar's and then everyone came over for cake and we played RACKO. It was a fun time with all of Paul's family.
As you can see, we had three cakes to celebrate all the different events.

May 19th was a super busy day. Karina turned 17, where has all the time gone? Thomas and I went to her house for breakfast and gave her gift to her. Then, we went to Jackson's Pirate Bday party, then we sprinted to Karina's lunch bday celebration. We had to have a lunch celebration because Karina was going to PROM the evening of her birthday. I can't believe how grown-up she is and how beautiful she is. Below is a pic of her and Daniel (he is her boyfriend and I really really like him).


Later on in the evening, Paul and I went to see The Avengers, while Thomas got a little more spoiled by his Aunt Trishy and Mimi. The movie was really good and it was nice to spend a little alone time with my main man.

The next big thing that happened was MAY 23, I did it, I went back to work. It felt great to see everyone, catch up on all my emails, my computer work and nursing updates, and to be back in my element. Once I am at work, I love it, I believe nursing is one of the best professions in the world. I only had to work an 8 hour shift, so I was back home with my Tommy by 4:00 pm.  I also worked on Friday, a full 12 hour shift, and it seemed to fly by! All day, I count down the minutes until I get to see my Thomas. Friday night, I loaded the van with all our camping stuff because we were leaving in the morning to go camping for my Aunt Kay's 60th Birthday. Not just because she is my aunt, but she honestly doesn't look or act 60! Saturday morning, we were all ready by 0630 and we headed out, but there was one problem, all the brake warning lights came on in the van. After my last brake drama, I was taking no chances, so we went home and threw everything in the truck and started over. My docs said I couldn't sleep on the ground in a tent, so we camped all day, but slept in a hotel at night. It was a very relaxing, hot weekend. We had a lot of fun with Thomas and all his cousins, Austin, Jackson, Cash, Charlee, and Noah. Paul even commented how nice it was to go to a family event where there was no drama. I must admit, it was really nice. Paul also loved my cousin Mike's camper. He has been reading all about them here lately! The only other camping experience Paul and I had was during November one year and it was COLD, no bueno. I am waiting for Karen to send me the pics from camping, or I would post one now. We rushed home on Sunday night and headed to Blayke's 4th Bday party, where Thomas swam and went down the big slide into the pool with his daddy. We were all pretty tuckered out and we all crashed Sunday night. Memorial Day arrived and we went to Aunt Celinda and Uncle Rick's house to swim some more and eat hamburgers. Monday was another low-key, relaxing day. Paul was mowing lawns all day, but he met us at their house for lunch. My sister, Karina, and Daniel all came too. There is nothing better than jumping into a cold pool on a hot day. 
This is Thomas discovering what a "real" phone is at our hotel.

Jackson, Thomas, and Charlee eating a little jerky!

 Tuesday, after Memorial Day, we woke-up early and took my van to the Chrysler dealership and this is where my nogoodverybadluckwithcars started-up again. This deserves it's own post, so I will save it for later.

One final thing, look at my new plates baby......
Sorry, I couldn't figure out how to turn this pic, but you get the idea!! If you are interested in getting Donate Life plates, I encourage you to do it, only $30. Thanks for keeping up with me and please forgive me for taking so long to blog again.

Sunday, April 29, 2012

Life Goes On

     It is weird how life just seems to keep going, but things are a little different. I am now aware of the important things in life. I had the absolute privilege to attend the First Annual Walk for Donor Awareness at Deer Park High School North Campus.  A long-time friend Mel Black posted about it on her face book page. This subject is also very near and dear to her heart as her precious nephew was who was being honored at this event. Mason Black was both an organ recipient and donor at his way too early departure from this earth. I was so impressed by the three young high school students that put this whole event together. I wish the new media would cover stories like this because our world is still full of great kids. I found out that one of the girls was a daughter of a beautiful girl I went to high school with. She must be such a proud mother, and I know she is the one that taught her to have a compassionate heart. The money raised is being donated to Nora's House, which will be a house for transplant patients in the medical center, very similar to how the Ronald McDonald house works for pediatric patients. I ran into a ton of friends and made some great contacts with Donate Life. I really have a desire to get involved in these type of events and to help spread awareness. I want people to see me and know that organ transplantation is amazing, life-changing, and the best gift you could give someone.
    The night was quite emotional for me as I left in tears just looking at my son and I hope he grows up to have a heart like the students I met. I hope he is full of passion to help others and to support such noble causes. I hope I don't raise him to be too busy to get involved in things like this. I love him so much and I know what a huge responsibility I have as his mother.
    I have been seeing God answer prayers left and right lately. I want to scream from mountaintops about one in particular, but I can't say anything yet, so y'all will have to wait a little longer. But, it is a great feeling to look around at my friends and family and realize that God is at work all around me.One big blessing to me was my friend Priscilla's visit. She brought a few things to my attention and she stated that I have changed, and I guess I have. It is one of those instance's where all that I have been through in my life has left its mark. I am very cautious about what I say now and I have to think about every little detail of stuff before I do it. I think about where an event is (outside is best), what are they serving (can I eat it), will people be smoking (I cannot be around smoke at all), and how long will I be there because I need my meds, glucometer, blood pressure reader, thermometer, and all kinds of emergency numbers if necessary. It is hard for me to be spontaneous anymore, and I used to love being spontaneous (Thomas limits my ability to be spontaneous too). Anyways, all of this made me get to thinking about the person I am. She also thinks I honk too much when driving and I was trying to justify it by the recent wrecks I have had because now I am scared of people turning and hitting me all the time, so I might honk too frequently, but today (Pree you will be proud) I held off on honking. Pree is afraid I will get shot at for honking, she is from Los Angeles, enough said, but I don't want to ruin any one's day by honking at them. Sorry if I have honked at any of you recently.  On a profound note, I never thought this would be my "story." I do remember saying in college at a church event about what we thought our future had in store for us and I boldly said,"I think God has great plans for my life and I hope He uses me to my fullest potential." Crazy words because I never thought this was my path. I never thought I would bury babies, I never thought I would be pregnant with twins, I never thought I would get pregnant a second time, I never thought I would have a chronic illness, I NEVER thought I would have cancer, and I for sure never thought I would receive a life-saving organ transplant. I never imagined God's plan for me and I hope I don't limit Him know, I hope to hear His voice clearly, and I mostly hope I follow His will and not my own for my life. Sometimes, as I was talking to my wonderful friend Becca Smith about, it is really hard to know which door God has opened, or what is His plan not only for me, but for my family. It is times like this that I want to tell teenagers, "Don't rush to grow-up, responsibility is not all that great some times." Why do we rush to grow-up? If I could, I would go back an enjoy every second of every family vacation, family camping trip, every holiday get-together, and every special moment I had with my Grandma Emerick. Oh, I miss her so much. I often go out to her graveside when I go and visit the boys. It brings me a little comfort knowing that she is buried close to them. Speaking of graves, I think Karen might think I am a little weird because I was telling her how I want the twins to be moved to be with me or right next to me when I pass on and I am buried. She advised that I should just leave them and let them rest in peace, but I envision us all buried together as a family someday. I know that it is just their bodies, not their souls in the grave. It just makes me smile when I think how all of us could be together at the cemetery when we weren't able to all be together here on earth.
     Okay, so my labs have been a little bad here lately, my bilirubin has been elevated, so I have been doing labs more often and they change my medication doses every time I do labs. Tomorrow I go to an Endocrinologist to help me taper down off of my NPH insulin. While I am on the topic of blood sugars and diabetes, please listen-up parents of diabetic children. I, even as a nurse, never knew how TERRIBLE a person feels when their blood sugar is either too high or too low. I know of a couple of mothers who do a great job with their kids that are diabetics, but I have also run across families that must not know how serious diabetes is. It leads to kidney failure, slow-healing, loss of toes (sometimes legs), and all kinds of other problems. I can tell exactly what my blood sugar is by how I feel. So, I just want to encourage parents out there to please do your best to help your kids with this issue, they are too young to articulate how it makes them feel and they are not the ones preparing meals at home. Please ask their endocrinologist how many grams of carbs they are supposed to eat with each meal and stick with it, please always pair carbs with a protein, and please please teach them how to get help or what to do when they start feeling like their sugar is too low. I hope and pray that I will be able to call myself a non diabetic soon, but so much of that depends on my exercise routine because exercise works like insulin. While my labs or sugars might be out of whack sometimes, I feel fabulous most of the time. If I start to get down or feel sorry for myself, I just think of all the wonderful blessings, people, family, etc in my life and I feel better instantly. I hope to live a life that makes people want to become organ donors!  I have a lot more to say, but finding the time to sit down and blog has been hard lately because if Thomas wants my attention, I stop what I am doing and give it to him, but right now he is snoozing away during his nap and I am taking full advantage.
    I just have to do one more load of laundry and vacuum before Paul's family comes over for his 32nd Birthday Celebration. I am excited because I love Birthdays.  Thanks for reading and let me know if there is ever anything you wonder about, I promise I am not shy!

Sunday, April 15, 2012

Update

Well, I went to the doctor a week and a half ago and things are going great. My incision is finally healed and I no longer have to change dressings, we are going down on my steroid dose again, all my other medication doses stayed the same, and I can now jog. I went jogging the same day they told me I could, and I have to say that it hurt my abdomen. So, I have been easing into the process of increasing the intensity of my work-outs. I hate feeling like I could do more, but I want to be cautious with my body because the main complication of post-transplant surgery is developing a hernia. All the men in the waiting room talk about how much the hernia repair surgery hurts. I know this was a bunch of men and men tend to be way wimpier, but I really don't ever want another surgery if I can help it. The doctor said that my hair falling out is a side effect of the Prograf (my main immunosuppressant), there is a different one we could switch to, but the side effect of that drug and facial hair growth!!! As soon as she said that I pictured Paul and I sharing the mirror shaving together and I sain "no thanks!" So, I am just going to deal with it, in the big scheme of things, it is not that big of a deal. I go back to the doctor on April 26th and that is when we will re-evaluate me being able to travel more than a couple of hours away. I do labs once a week and this week I will go on Wednesday.
   Thomas has a big appointment this week too. His left leg is bowing, so naturally, he has an appointment at Shriners to check out his leg. He is in the 93% for his height, so I think he will grow out of it, but we will see. I love Dr.Scott and I trust her opinion, she is not only a wonderful doctor, but a stellar person. She can remember everything about her patients, she cares about them, and she is probably the fairest person I know.
    I have been a bit emotional lately, I can hardly talk about my cousin Karen without tearing-up, and I feel so blessed. My Aunt Kim had a garage sale at her house this past weekend to help us out and she simply amazes me. She helps so many people every day of her life. My mom, sister, husband, aunt Kay,and cousins came out to help too. I had forgotten how much work a garage sale is, but we had a great turn-out.
    I have been keeping busy with my work-outs, cleaning, deweeding, and I started the task of thank-you cards. I have so many people to thank that it is almost an overwhelming task, but I am steadily working on them everyday. Thomas loves to try and "help" me with the cards, but that does not always work out for momma! I am going to the eye doctor this week because I feel like my vision has changed and I am out of contacts. I am trying to squeeze in all the appts I can before I go back to work in May. I have also started sewing a little bit, which I really enjoy, but I am not too great at it yet!!!
    Easter weekend was wonderful, if you live around here, you know that the weather was PERFECT!  Thomas went to several egg hunts, he is so fun this year because he knows what to do. We went to an egg hunt at his Mother's Day Out program on Wednesday, one at our bank on Friday, and then the big one at our church on Saturday. He of course hunted eggs Sunday morning at our house and then again at my cousin's house Sunday afternoon. On Saturday, Paul's parents came to the egg hunt at church, as well as my mom, my sister, my cousin Lisa, and her daughter Charlee. It was a lot of fun. After that, we had a picnic at the park with Paul's parents and Thomas fed the ducks. He loves animals, which I know comes from me. I am sad that I can't be around animals or have close contact with them right now, but hopefully in the near future, I will be able to handle animals again. Saturday before Easter, we went to dinner with Paul's family and then we headed over to his Aunt Celinda's house to visit with Nana and Papa! They came in town from Alto, Tx. I love Nana, she is one of the most godly, loving, and wisest people I have ever met and I soak-up every minute I am blessed to spend around her. It has been hard not being able to travel up there to see her. We visited for a while and then we had to leave because I still needed to go to the grocery store for Easter supplies, color eggs, and clean-up. Saturday was super busy, but tons of fun.
     Easter Sunday was beautiful! It is so fun to dress-up Thomas. We all wore navy blue and white for Easter and my cousin Lisa, her children Charlee and Noah, her mother Jeri and Jeri's friend Charlie all came to church with us, which was super nice because it was Paul's week to work in the nursery during the service. After Sunday School, I went home and made deviled eggs for the first time in my life, they turned out okay, but I will improve this skill soon. I gathered all my stuff for Easter lunch and we headed over to my cousin Deborah's house. The kids played in the sprinkler, on the trampoline, and with the slide and toys all in the backyard. We hid a buch of eggs, some with $$$ inside, and the kids had a blast trying to find the GOLDEN EGGS. Lunch was great, but the company was even better. My cousin Karen took some great pictures of everyone, so I will try to put one on here if I can.

     Yesterday, Paul, Thomas, and I went to the Bluebonnet Festival and had a blast. I love seeing all the home-made stuff, people are so creative. After the festival, Thomas and I went up to our church for the youth choir auction dinner. It was a ton of fun and Thomas even won a water gun in the raffle. I was so impressed with the decorations, the talented entertainment, and with all the stuff up for auction. I love our church so much. We are having a Women's Night of Worship this Thursday at 7:00 pm if any of you ladies are interested. I am so pumped about this special night of praise.
     I am so excited about this coming up weekend because my soulmate friend Pree is coming in town from Los Angeles. I cannot wait to hug her neck! She is coming in for my Birthday weekend and we are going to the Astros game on my big day, and guess who they are playing, The Dodgers!!! Anyways, I hope to do a bunch of fun stuff with her while she is here. I miss her like crazy and it has been since my brother's wedding this past summer since I have seen her.
     I was extra blessed this past couple of weeks by a wonderful group of fifth graders from Fairmont Elementary School. They raised over $300 to help pay my medical bills by selling candy. They also sent me the sweetest cards. My heart was so touched by this wonderful kids and a reminder that you are never to young to make a difference in the lives of other people. My good friend Beth Williams is their teacher and organized it all, so a big thank you goes out to her!!
    
The picture above is from the Bluebonnet festival, my little cowboy is growing-up! I hope this blog cheers you up and I hope I bump into you soon.

Sunday, April 1, 2012

Five Blissful Weeks

    Can you believe it has been 5 weeks since I received my liver? I can honestly say that I am full of energy, I never realized how tired I felt all the time before my transplant. I used to fall asleep all the time watching television with a load of laundry running, dishes that needed to be washed, and lunches that needed to be made. I am now staying up late just because I CAN! I still love to wake-up early because it is so great to have another day to enjoy this wonderful life. I love every minute of my days with Thomas. I love getting him dressed, cooking for him, shopping with him, HOLDING him, and loving all over him. I am having to wear gloves around him for eight weeks and a mask for two weeks anytime my face is close to his face because he got his 18 month shots this past Friday. Anytime he gets live vaccines, I have to do this. While I love touching him skin to skin, this is a small sacrifice, nothing in comparison to the sacrifice made for me.
     On this topic of my donor, I hope and pray that his family wants to meet me If they don't, then they at least have to write me back. I want to know my donor's name. I want to be able to say it, to honor his name, to keep his name on the lips of others, I want his name to be known to tons of people. I would love to set-up a scholarship or something like that in his name. Please pray that his family wants to meet me. It is very important to me. I have started the letter to his family a few times, but I get all choked-up every time. When I exercise, I have the best thoughts for my letter, so I decided that tomorrow while I walk, I will record my thoughts out loud and then maybe that will help me write the letter. I think my problem is that no words seem to express just how grateful I truly am.
     I have lost a total of 27 pounds since the DOT (Date of Transplant), this is the new lingo they use at my doctor's appt, instead of DOB, we use this new date! I graduated from my weekly dr appts to every two weeks now. I only had to do labs once in between my appts. I go back to the doctor this Thursday, April 5th, and hopefully he will release me to exercise a little harder, travel a little farther, and hopefully, we will continue to go down on my doses of medication. The lower the dose, the less immunocompromised I am. I will forever be immuno-compromised as long as I have this new liver. A few things I can't do anymore is: eat at buffets, eat at potlucks, be in really crowded areas, work in the church nursery, work in the yard (darn), and a few other activities! I am trying not to be a psycho germaphobe, but I want to take the best care of this liver that I possibly can. My life expectancy is now normal, meaning that I am expected to live as long as anyone else my age, gender, etc..  That fills my heart with joy!
     I made a video with my aunts updating how I look and some info that everyone probably wants to hear including pictures of my incision! We will be uploading it to YouTube soon and I will post the link for all of you to enjoy!
     I have been able to share my testimony with several different people at restaurants, shopping, church, or just out and about. I can't seem to hide my enthusiasm and excitement here lately. I get overwhelmed sometimes with joy. I used to pray without always expecting results, sometimes I think we all do that, we pray and forget to ever look for an answer. Well, remember me the next time you need an example of an answered prayer. God is still in the business of performing miracles and answering prayers! I can't say thanks enough for all of the prayers sent up for me. My favorite place to be lately is church or worshiping. I catch myself raising my hands up as I exercise at the track listening to my praise music and I often start singing out loud. I have stopped caring so much about what others think of me, I have one person that I want to please and honor and that is Jesus Christ! 
     I love to check the mail lately because I usually get a sweet card in the mail and it makes my heart smile. I have been surprised by how many people have gone out of their way to be kind to me and my family. I feel like this whole thing has actually been a blessing to me. I have found out who truly loves and cares for me, I have found out who my true friends are, I have realized what is important in life, and I learned how to prioritize things much easier. I am just so happy to be here, I mean, heaven sounds great and all, but looking at Thomas feels pretty close to heaven! I was thinking about how becoming a parent really makes you stop and think about spiritual things. I often think of Mary and how she had to nurse Jesus, teach him to walk, talk, become independent, let him grow-up, and most of all how she had to watch her son die on the cross. I just don't know how she did it. God knew she was strong enough for all of this. I wish the Bible had more details sometimes about the little things, but I guess it would be way too long. I look at Thomas and think about the miracle he is and how God made him so perfect. Love has taken on a whole new meaning to me when I think in terms of Thomas. He is the person I would do absolutely anything for!
     I am currently looking for recipes that taste good and are low-salt, and good for a diabetic (low carb and must have protein). I know, with that description, good-tasting doesn't seem to come to mind, but I need some new ideas! If you have any, please send them my way.
    I am getting so excited for Easter Sunday! I am so glad that Jesus died for me and rose again! I made Thomas some shirts for his Easter Egg Hunt at our church and for his school party. I am still very new to this whole sewing thing, but each time, I get a little better. I know I need to do a better job of blogging, but to be honest, I have been super busy living life to the fullest. Let me know if you have any questions, I am not shy, so just ask.

Wednesday, March 14, 2012

I Can Only Imagine

     So, I mentioned earlier about the song "I Can Only Imagine," by MERCY ME, and that I heard it on the way home from the hospital. This song is special to me in way more ways than one. The first time I heard this song, I was in college at ULM, it was the summer and my family (Mom, Dad, and brother John) came to pick me up from school and we headed to Eureka Springs in Arkansas for vacation and to see the Passion Play. In the car on the way, my little brother introduced me to this song, I instantly loved it. We listened to it several times while driving through amazing scenery. People always joke about Arkansas, but it really is a beautiful state. I enjoyed watching and listening to my little brother sing this song as loud as he could and with his eyes closed. My entire family was singing, we were worshiping together as a family to this touching song. I love the words to this song, I love imagining heaven. This song has brought me comfort so many times, but especially after my babies died. I thought of this song and how my babies were at the feet of Jesus, what were they doing, was Jesus holding them?
     I'm not done, because of this song, I started to love the band Mercy Me. I read all about them and realized that they were the "real deal." I worked at my church in Monroe, La and they came to perform a concert at our church. I can remember being so excited, I could barely contain myself. If you know me, I am not very big on celebrities, autographs, etc. I mean, actors and musicians are just people, I don't think we should worship them. But, Mercy Me was different, they had written a song that was literally changing lives all around me. I can remember singing this song at the top of my lungs in my friend's truck and feeling so connected to people spiritually. Anyways, my beautiful roommate Abby went to the concert and we had a blast, but the guitarist noticed her and he loved the way she worshipped, isn't that sweet? Next thing I know, Mercy Me is coming back to Monroe a few weeks later and Mike (the guitarist) had mentioned an interest in Abby to our college minister and you won't believe this...... Mercy Me ended up coming over to our house. I mean, they were at our house people. Abby and Mike had an instant connection based on Christ and today they are married and have three awesome kids. Abby had a son, adopted a girl from another country, and then they had another son. Abby was living the life we had talked about for her future. We had even painted our kitchen at our house with what we would look like someday and Abby had kids all around her of different races because she just has that kind of wonderful heart, full of love to give to children. Abby and Mike have been a constant support in my life. They helped sponsor me when I went to Africa on a mission trip, they sent me flowers when the twins died, they donated items to both the softball and volleyball tournaments, and I know they pray for me. They are an amazing family and I am so proud to call them my friends. It is nice to know that this band is full of Godly men. It makes the song even more special to me. The thing about this song is that it still evokes emotion out of me today, I never get sick of it.  I encourage you to check this band out and please listen to the song if you never have before, it is well worth your time.
     Hearing this song on the way home brought me to tears because I was so afraid for the past six and a half months that I was going to die that I had imagined what heaven would be like a million times. I knew all the questions I was going to ask God, like why can't we regenerate body parts like a lizard or starfish, I have a ton of questions about dinosaurs, and then a bunch of questions about my boys. I wondered if they have aged or if they are still babies, I wondered if they would know who I am, I wondered if I would hear Him say those words... I am proud of you my faithful servant. I always wondered if I would have regrets, I don't want to have a bunch of regrets, I want to live my life differently. I visualized hugging my grandmothers, meeting my mom's mother for the first time in heaven. I can't wait to hug their necks, and I want to meet all the disciples and talk to them, and I really want to talk to Mary. I want to hear what Jesus was like as a baby, did he throw tantrums?  I am still excited about meeting Jesus someday, but more excited about spending eternity with Him.

     I have a little update about my donor, it was in my coordinators words, " a very young male." That is it, that is all the details they gave me. My surgeon said that I basically received a brand new liver. My life expectancy is the same as if I have never had a health problem. Isn't that incredible? I am waiting until I am alone to write my letter to the donor family and I pray that they do want to meet me someday. I need to meet them, to thank them, to hug them, to know them, I want them to know I will honor the memory of this man all the days of my life. I was thinking about Thomas and how hard it would be to donate his organs if he died. When this guy's family said goodbye to him for the last time, his chest was still rising and falling because he was on a ventilator. I can't even imagine how hard that would be because it would feel like he was still alive. This is such a gift, a blessing, a miracle. I can't really wrap my head around the fact that a doctor removed my liver, a major organ, and they put a new one in and now, I am more alive than ever with tons of new found energy and I feel like there is so much joy and love in my heart that my heart is swelling inside my chest. I can hardly contain my joy when I am singing praises to my King. I also imagine meeting my donor in heaven someday. Oh, I hope this is part of my heaven experience. I will write a letter to the family, my coordinator will send it to Life Gift, and after six months, Life Gift will give my letter to the family and then the ball is in their court. It is totally up to them if they want to contact me, meet me, write me back, etc.. Please pray that they want to meet me. I really need to meet them, it is just who I am. I want to know a mother that is so selfless, she was able to give her son's organs to save many lives.

     I go back to the doctor tomorrow morning! I will try to blog more frequently, but I have been busy exercising twice a day and eating well-balanced diabetic, low-salt meals, taking medications on time, and just learning that I do have a few limits. Something God has really taught me throughout this entire experience is that it is okay to need people. I have been independent my entire life, almost to a point that I was proud. But, I love to help others, I receive so much joy from helping someone else, or just brightening someone's day. Now, people are doing that for me and I hope they all know how much it means to me. I love checking the mail because I have received a card everyday since I have been home!  The mealtrain has been a life-saver for us and makes our evenings go so smooth. I think God is showing me that He made a ton of us because we need each other, he did not create us to live alone, He wants us to fellowship, share, and love. Knowing someone loves you makes you feel so good inside, love really can conquer. Love is such a small word when you type it or write it, but it carries so much power. I am so glad that I have a family full of LOVE! I am missing my cousin Karen, she went to Florida for a girls trip, but she sends me picture texts of the beach and that makes me smile because I love the beach! My niece Karina has surprised me with her support, maturity, and love. I feel closer to her than I have in a long time and that alone makes my heart smile. My sister and I have a bond now where we don't have to talk, we can just look at each other and we know what the other is thinking. My mom got sick on Monday, so I haven't been able to be around her for the last 48 hours, so my cousin Lisa Wood stepped up and helped me out yesterday and we ended up having a really good time. My aunt Kay Wood has been helping us out with Thomas, allowing Paul and I to have some much needed alone time, mostly working-out together. Everywhere I turn, I have support. It is such a blessing to live each day with a feeling of my cup running over. Until next time, thanks again for everything! Tell someone you love them!

Monday, March 5, 2012

What a Week

     It feels so good to have been HOME for a whole week. Of course, I know this is just my temporary home. I have been blessed by so many people this past week. We have enjoyed so many delicious meals prepared with love by our friends and family.  Paul joked tonight how nice it would be if this lasted the rest of our lives! I actually can't wait until I can cook for my family again. I will be learning how to cook a whole new type of meals. I am now eating a diabetic, low-sodium diet. For the first time in my life, it is not hard to make the right choices when it comes to food. I told my doctor, this liver will only experience healthy food or food in moderation. People can bring all kinds of food, desserts, donuts, you name it, and I am not in the least bit tempted to partake. I mean, I have no intentions of ruining or hurting the most selfless gift I have ever received. Priorities are very different these days.
   
     Last Tuesday, I went in to clinic for lab work and the only bad part of this is the car ride. I might write the city of Houston about fixing all the bumps and potholes on Main St in the medical center. The main problem I have had is constant, persistent diarrhea. I literally start to cry when I have to go to the bathroom again, it is quite painful. They think this is a side effect of some of my meds, mainly magnesium. My labs showed low magnesium, so they even just went up on my dose of medication. I have lost 18 pounds so far and hope to continue in my weight loss journey.  My coordinator reminds me that this is not my goal right now and I realize that. I am taking lots of steroids as well, which is contributing to my blood glucose levels.  I am taking quite a bit of insulin at the moment, but I hope this will change soon. I am eating exactly how I have been instructed. Tuesday evening, my friend Kim Artall came by for a visit and brought a beautiful cookie bouquet. I enjoyed catching-up with Kim and having a time of normalcy, it makes my heart so happy every time I get to spend time with my longtime friend. I also received the most delicious cake balls decorated like little doctors, nurses, medicine, and medical supplies from the pharmacy department at the Galveston Shriners Hospital. It is so nice to have worked with such wonderful people.

     Last Wednesday was the only weekday that I didn't have to go into the clinic.  So, I took it easy for most of the day, except for my daily exercise, I went to Target with Karen. We were only there for about 30 minutes, but it felt so good to get out of the house.  The best part was feeling like a wife and mother again. I cannot hold Thomas or pick him up, or change his diapers, but I was able to shop for him and buy him food. It is the little things that I am able to do that make my heart happy. Wednesday night, my Aunt Tricia and Uncle Booley brought us dinner that was yummy and so appreciated. I think this is the same day that my good friend Katie Jones Weisen also came by and brought so much stuff, paper towels, gloves, glucometer, bleach wipes, gift card to Target, and the list goes on. She never ceased to amaze me because she is also a busy single mom of a cutie named Jackson. She works full-time and goes to school. She has a heart of gold and she came into my life after the twins died as a steady source of strength for me. She is a widow and was able to help me with my grieving process and I could freely express myself to her without her casting any judgement onto my life.

    Thursday was a busy day. It started with more blood work and an appt with my doctor. Dr. Goss is extremely handsome, confident, kind, brilliant, and his life is a true sacrifice. He and his partner Dr. O'Mahony never do a transplant surgery without each other, one of them always harvest the donor organ, and they are phenomenal. All of this also means that they don't go out of town much, they sacrifice time with their families, and they are literally on-call all the time. It amazes me that people like this exist. It inspires me to give more of myself like they do. I told him how much I appreciate him and what he does, he strives to be the best as well, but I have to be honest and tell you that the fact that I received no blood transfusions during my surgery is a true testament to his skill level. My incision is not healing great, but we are on the right track. We changed the dose of my insulin, I asked a ton of questions, and I asked about my donor. My coordinator said that that information was under lock and key and she did not check it before my appt so she would try to let me know next time. I really want to know more about this person. Before the doctor came into to visit me, this really sweet woman came into my room and introduced herself, it was Tamara, the sweetest voice I have ever heard. She also has a very sweet spirit about her. We hugged for a long time and I just cried. It felt so good to meet her. It is like we have some sort of unspoken bond now. The appt wore me out a bit and when we got home, I ended up resting a lot. They told me I could take this crazy binder off of my abdomen when I lay down, so I couldn't wait to get a break from the binder. I was resting in bed when the best jumping jacker I know Barbara Gillies came over with a scrumptious dinner. Her husband is a very lucky man. She is such a funny lady. When she came by to visit, she said, "I prayed over my utensils tonight just for you." Barbara is one of those people that is good at everything she does. She helped us with several fundraisers, she has steadily prayed for me, and she is a regular at the boot camp. My goal is to someday be able to beat Barbara at workout. Barbara has been nothing but a blessing to me since the moment I met her.

     Friday was really busy because I had to go to the med center for labs in the morning and I had to return for an abdominal ultrasound in the afternoon due to my billirubin levels being elevated. After the 8am labs, I returned to Pasadena and went to my MOPS class at church. I love fellowshiping with these other moms, it is so good to find out I am not crazy and that other women think just like me. To be honest, there is no where else I would rather be than at church. After MOPS, we went home and I rested before my ultrasound. I had to be NPO from all foods the whole day and this is where I became frustrated because my blood sugar was still elevated, after eating no food. It just blows my mind how the medications I take make my blood sugar go so crazy. Karen took me to my ultrasound at 2:30 and I was worried it was going to hurt, but the lady doing my ultrasound was very kind and gentle. I had to remove my dressing and Karen redressed it afterwards and we headed home. I always look forward to my time with Karen, she is just so full of utter goodness. She lives her life to help others.

     On Saturday, my Aunt Kay came to take care of me while my mom went to watch Karina's dance competition. For the first 30 days post transplant, we have to have two adults here all the time, one designated to take care of me and one designated to care for Thomas. It was nice to spend time with Kay and I was able to thank her for having Karen and for raising her right. I want so bad for all of Karen's dreams to come true, she deserves all the happiness in the world. In the afternoon, my good friend Kelly Brautigam came to care for me. I always tell people that if I need a nurse, I want it to be Kelly because she is extremely thorough and follows orders to the T. It was great to visit with her and she went to get Chilis for dinner. I had a blast catching up with her and hearing all about work stuff. I love the people I work with, they are some of the finest people I have ever known. I went to bed a little early Saturday night because I wanted to get adequate rest before church. I have a new excitement about going to church. I can't explain it, but I want to be in God's presence all the time and I want to be around other people that know my Jesus, my  miracle-giver, my prayer answerer. I want all to know Him.

    Sunday, we were a little late to church, but a lot of that is due to things I can't control, like diarrhea:(  It was great to hear the sermon and sing songs to my Saviour. I was able to talk to so many people and it was touching to see how many people are filled with joy from God answering our prayer. I want to go and personally thank those that prayed for me. When I am released to drive and travel more, please let me know if your Sunday School class or Bible Study Group has been praying for me, I would love to come in person to say thank you. I hope to prepare a PowerPoint of my journey and share my testimony every chance I may get. Thomas went over to my cousin Deborah's house Sunday evening and he had a blast playing with her two boys. He was so excited to get to go somewhere, he is very outgoing, which I am glad about. Speaking of Thomas, for the past six and a half months I have been extremely protective of my time with Thomas, I wanted pictures of everything, and I wanted to always be around him. I guess because if I was going to die, I wanted him to have some pictures and memories of me. I needed to be around him as much as possible. I can already feel my heart allowing me to be more relaxed about this issue. I know I still have issues from losing babies, like I don't ever want to spend the night away from him, the nights I spent in the hospital are enough for my lifetime. I want to always be in the same city as him, I don't know if I will ever be able to let him go to camp and be in a different city at night where I can't get to him immediately if something happens. I just love him so much. He is happy nearly all the time and his smile simply melts my heart. I can't wait until I can pick him up again. It is so hard when he is reaching for me and crying and I am only able to pat his cute little head. In time, this will pass and in the big picture, this is a small sacrifice compared to the sacrifice my donor made. I just love him so much. Thomas loves me unconditionally, I am sure of this and I will love him unconditionally all the days of my life. I pray he comes to know the Lord and that we will spend eternity in heaven together. Sunday dinner was brought to us by Peggy and Wayne Tabor and it was barbecue beef, which is one of Paul's favorites, it was extremely enjoyable. Thanks Peggy, the visit was even better than the food, I love you much.

     In the wee morning hours Sunday morning, my dad was taken by ambulance to the hospital for what people at work thought was a heart attack. It ended up being an extremely high fever and white count. My sister met him up at the hospital and he is still an inpatient tonight. They are running a bunch of tests to see where the infection is coming from. This has added a little stress to our whole daily routine, but nothing we can't handle. Please say a little prayer for my dad if you get the chance.

    Today, Monday, we went back for more blood work at 0800 and I received a call from my coordinator. They had drawn blood cultures and collected urine cultures on Friday due to my elevated billirubin as well. It turns out, I have a UTI (urinary tract infection). So, one more medication to add to the list for ten days to treat this. At my 9am medication administration, I take 29, that is right 29 different pills. It is overwhelming to get meds ready every week, but I know the number of meds will go down after 3 months and then again in a year.  Paul and I were able to stop at Cavenders on the way home to pick-up Thomas a shirt for Western Wear Day at his Mother's Day Out class. When we got home, my friend Amy Suffron came by for a much needed visit and girl time. She stayed with me while Paul went to pick-up Thomas from school.  I took a cat nap and called Verizon, because if you remember my previous post about my bad Verizon experience, I received my bill today for $600, of course all of it was bogus and a huge mistake, but I spent quite a while on the phone getting it all fixed. It should be fixed by tomorrow. Dinner was served by my sweet cousins, Deborah and Henry. It was also very tasty and it was nice to get to visit with Deb for a bit. Thanks again for reading, loving, caring, and encouraging. You guys are amazing and all I can say is that daily I am lucky enough to feel God's love and blessings in my life.
    

Tuesday, February 28, 2012

A Whole New Lease

      I have no words to correctly express my emotions. A few would be honored, new responsibility, new attitude, new hope, new-found gratitude, how do I accept such a selfless act, where does my life go from here? I could keep going on and on, but I will tell you about the night we got the call.
     Of all things, I was making lunches. I guess I am a true mom and wife. At 11pm Tuesday night, I finished catching up on my Dance Moms DVR shows, I made sure our work-out clothes were in the dryer so they would be ready for bootcamp, and then I walked into the kitchen and started making lunches. I heard my phone ring, no one calls me this late, so I sprinted to my phone. It said BLOCKED call, I have only received these type of calls from my doctors in the past, so I knew something was up. I heard the sweetest voice I had ever heard, it was Tamara, the on-call coordinator. She said who she was and I said, "Oh My God, this is it, Oh my God, you have a liver for me," followed by lots of tears. Tamara said that this is her favorite part of the job and that I needed to go to the ER at St. Luke's for further information. I was waking Paul up at the same time I was on the phone and I asked if I could take a shower. She said it better be quick. Paul hopped up and said that he needed to take a shower too. We enjoy being clean. Paul jumped into the shower and I called my mom! My mom, the one who can't look at me without crying, the one who whispers in my ear how she wishes it was her with cancer instead of me, my mother, the one who taught me how to love, live, laugh, enjoy, cherish, I finally got to call and give her GOOD NEWS. I called my sister and Karen and Aunt Tricia. I had no way of calling John, but my parents did. I sent out a bunch of texts, I cried continuously, I thanked God for every single prayer lifted-up for me these past 7 months, I held Thomas tight, I cried some more, I gasped for air, I laid my life in God's hands, literally. I know how risky this surgery is, there is a risk I might not ever wake-up again, but I had to trust in the Lord with ALL of my heart, no half effort here people. I told Paul and Thomas how much I loved them the whole way up to the hospital. I prayed out loud, cried out, I was at a loss for what to do. We get to the ER and a lady asked me what I needed. I said, "I'm getting a new liver and they told me to check-in here." Wow, I mean how many times in my life will I ever get to say something like that? The lady smiled and took me into a room to sign all my paperwork. I was grinning from ear to ear the entire time. I was sent up to a room and now, my parents, Karen, my sister Tricia, and Heather Schumaker had arrived too. The nurses and staff never said a word about Thomas being there. Thomas stayed awake all night until 0525. He didn't want to miss a thing and I wanted to spend every minute possible with him as well. Soon, Paul's parents arrived too. My cousin Kea Lynn came by, my parent's pastor Rob came by, Blair came by, Paul's sister Mary and husband Todd, Andrea Jewell, Wanda Webber, John and Stefanie Bennett, Deborah and Henry, Kea Lynn came again later with her two boys and husband Tony, Neill, Dr. Rowe, my Pawpaw, Tricia and Booley Hammack, my Aunt Kay and my Aunt Kim all came too. I mean, how lucky am I that so many people came by to hug my neck and tell me that they loved me. I hope I didn't leave anyone out. After getting up to the hospital, I had to wait 24 hours before my liver arrived. So, it was so nice to have a steady stream of visitors come by to pray with me, share with me, and help ease my nerves.
     So, I don't know if any of you reading have had a "moment" with Jesus, but I had a few. I mean, what do you say to your Maker at a time like this?  The coordinator called back to say that my surgery would be at 0200 or 0215 Thursday morning, February 23, 2012, my NEW DAY. Wheeling me back, Thomas stayed asleep on my chest, this whole process at St. Luke's put the patient first, my baby was in my arms up until we reached the double doors of the operating room. My entire family was by my side and able to hug my neck and kiss me, oh, I hoped I would kiss them again. The sweet nursing assistant rolled me to the room and I could see my doctors. We waited outside while the anesthesia people explained all the lines they would be putting in my body, I signed some papers, I cried, I prayed, I started succombing to fear. The nursing assistant said a prayer with me and wheeled me into the room. I transferred onto the operating room table, and then a person walked in with my liver in the most beautiful turquoise blue cooler I have ever seen. There was my new chance, my answered prayer, my gift, my ability to raise my son, my testimony, my LIVER. I started thinking, "I can't do this, I can't do this, I don't deserve this, I don't deserve this, it is going to hurt, it is going to hurt, I want off this table, help me, stop this, get me off this roller coaster." My anesthesiologist must have noticed the increase in my heart rate and put a mask over my face and told me to start breathing in big breaths, 6 breaths later, I was out like a light. I was exposed, naked from skin to soul, helpless, but hopeful. God, thank you for everything, that was my last thought, thank you.
     So, if you talked to me at all before the surgery, I probably told you how I DID NOT want to remain intubated post surgery. Well, I got my way,  in the ICU, I could hear my mom and Paul right after I came out of surgery. I was restrained and that tube was gagging me. My mom said I was giving all the staff really hateful looks and I asked to write something. I was thrashing around and pounding my fists on the bed. The nurse said there was no way I could write legibly this close after surgery, well, I proved her wrong, I wrote I NEED TO THROW-UP  on paper Paul got me because I felt like that tube was gagging me to death. Thank God for Paul, they decided to pull my tube. Once my tube was pulled and they removed my restraints, I felt much better. I have seen patients like this before and I can't believe I went crazy, but a girl has to do what a girl has to do. I mean, you can't talk while you are intubated and I had a lot to say. I was able to see my surgeon and tell her thank you. I was thrilled to be awake, to know my name, my social security number, my address. Yes, I was making sure I remembered everything. I had an IJ (intrajugular central line, a radial arterial line, foley, tons of monitors, a huge pain in my side/back, hose up to my hips, and all kinds of drugs dripping into me,) but I was ALIVE!  I started right away asking about getting out of bed, why my insulin was at such a high drip rate, how often they were checking  my blood sugar, when could I get out of bed, when could I see my family again.I was going to be part of my care team too. I soon was able to see other visitors and that really brightened my spirits. Only four visitation times were available for thirty minutes each visit, only two people at a time.  Loneliness was my only real complaint. I had to eat ice chips for all day until Saturday morning. I didn't really want have a big appetite, but they told me I had to eat to get out of ICU and to heal. By lunch time, I was really hungry. My energy was returning. On Friday, I had worked-out with the Exercise Therapist and he was impressed with my strength. I shared with him about my amazing, Godly bootcamp trainer David Wesley. He has been so good to Paul and I throughout this process and he has kept me in-shape and lifted me up in prayer. I feel blessed to know him and trust me, I will be taking care of my new liver and will return to bootcamp once I am allowed to do a sit-up again.
     On Sunday, I was moved to a regular room and then things really started progressing quickly. Paul brought Thomas up to hospital and I was able to walk down to the first floor and see my son. My son! My joy. He is literally my heart walking around on precious little legs. I was so grateful that Paul brought him up and he cried when then had to leave and ran to me to pick him up. I can't hold my son for a month at least. This is a struggle, but totally worth it and I know that there is a mother out there that can never hold her baby again because I am living with her baby's liver. I find out Tuesday a little more about my donor, it is very secretive. I will only find out sex and age. I can write a letter to have sent to the family in six months. What do I say in that letter? What do I tell this amazing person? How do I live the rest of my life? What now? 
   As you can tell, I have a ton of emotions and things running around in my head. If I was completely honest with all of you, I would tell you why I can't sleep. When I doze off to go to sleep, I see her. I see the mother of my donor at her child's funeral. I experienced a horrific experience of burying babies, not a child I loved for years, so I can't imagine her pain. When will this go away, I don't know. I wish I could talk to her and tell her how I will honor her child for the rest of my life. I will never go a day without being thankful. Because of her selfless gift, her child will live on through me and my children. I hope my donor is holding my babies in heaven, I hope they are all together.
   I can't wait to go to church. I don't ever want to sing a song sitting down in a pew again. I want to shout from the rooftops all my favorite praise songs. I want to be in God's presence all the time. I want to share Him, I want all the people I love and know to spend eternity with me in heaven. I am throwing away my Bucket List, I'm not going anywhere for awhile. I still plan on blogging about the song I heard on the way home, but right now, I am going to have to stop so I can change my dressing and get cleaned up. I can't say thank you enough to all of you for praying, loving, caring, coming to fundraisers, working for me, and just taking time to be a part of my life. Thank you!

Sunday, February 19, 2012

A Bunch of Things

     I know it has been awhile since I have posted, but life has been really busy lately.  I started working-out consistently again going to bootcamp 3-4 times a week in the morning and then I went to my first Zumba class this week at my church. I can honestly say that I am a TERRIBLE dancer and have zero rhythm, but I let loose and had a blast. I used to work at the Verne Cox Center with all different types of people with an array of disabilities. One thing we always did at the center was a dance once a month. It is crazy, but I learned so much from this group of people. They truly danced like no one was watching because they did not care what other people thought of them, oh how I wish I could live like that. I honestly miss these dances, I had so much fun dancing at these dances. I decided that day at Zumba that I would just go with it. I couldn't stop smiling. I keep inviting people to come along because I enjoyed it so much. The instructor is a wonderful woman, her name is Nicole and she has FIVE children!!!! When you look at her, you can't tell that she has had that many kids, I don't know how she does it all and juggles all her different responsibilities. She also leads the MOPS group that I go to and I absolutely love those Fridays.
     Speaking of MOPS, we had a guest speaker on Friday and she talked about making our home a "yes" home. I loved what she said. It honestly is easier to say no to our kids. I decided that when Thomas wants to read a book, I am going to stop doing dishes or vacuuming and read him a book. If he wants to bake cookies right after I clean the kitchen, I am going to bake cookies. He already is growing up too quickly and I want to take advantage of every opportunity to make memories with him.  I also want to pray more for my son and his future wife, his future friends, and I really pray that he wants to serve Jesus as well. I hope that our home will reflect the love of Christ in such a way that my son will choose Jesus.
     This weekend, my alma mater, ULM came into town to play U of H and Paul, Thomas and I went to cheer them on. It was great to see Coach Holloway and catch up with her. She had such a huge impact on my life, just the simple fact that she wanted me on her team and going up to Monroe was one of the best decisions of my life. While we were there, Thomas rolled down his first hill. He loved it and laughed the whole time. He is so happy, and Coach made my whole day when she said that Thomas had my smile!  My heart fills with joy each time I see him smile. He has started saying "I love you," and I get all tearful every time he says it, he will never know how long my heart ached to hear those words from MY CHILD. He is my greatest accomplishment.
     Lately, I have been blessed with several random acts of kindness/thoughtfulness. A coworker/friend Jennifer blessed me with a really sweet card and angel on Tuesday. She brightened my day and the words on the card made me smile all day. One of my little cousin Deborah's friends blessed me with a sweet gift that same night when I got home. I had one of those really long, frustrating days at work where it felt like no matter what I did, I kept messing up. Caitlin has been in my life for a long time and has been at almost all of my fundraisers. She left me a really cute mug full of candy and the nicest card. It made me cry. What most people don't know is that I keep these cards with me in my binder and I read them when I am waiting at the doctor's office or in the hospital and it really encourages me. Paul's Nana sent me a very uplifting card and blessed me with a gift card for a pedicure. My friend Kim Artall blessed me with foot scrub, a gift card, and a lovely card. I LOVE CARDS, just ask Paul. I always tell him that I don't really care what he buys me for my birthday or for Christmas, but I just want an emotional card from him.
     This past Friday after MOPS, I met Kim Artall and Andrea Jewell for a long overdue lunch/play date. It was so great to catch-up with them and at the same time, it is the strangest feeling to realize that we have all grown-up. We are all parents, we are all responsible, and we are all bruised. What I mean by that is that we have all experienced pain in our lives that have changed us and molded our lives. When you are growing-up with people, you don't think about this kind of stuff. I look at Andrea and I can't imagine being a single mom to two boys and juggling work, school, taking care of her grandmother, and parenting.  Thomas immediately took to Andrea and actually ate his first ice cream cone with her. I know he is a good judge of character now! I look at Kim, who is one of those people that her biggest flaw is that when she loves and cares about someone, she gives them so much. She is so thoughtful and giving, but people don't always return the favor. I was one of those people a long time ago that didn't give Kim nearly as much as she gave me. I am glad we have gotten past that and I am thankful for the gift of forgiveness. It is a blessing to watch her be a mommy to Miles, who I like to call "Mr. Blue-eyes." He seriously has the most beautiful eyes I have ever seen. Friday was a glimpse of how I used to dream my life would be at my age, I always thought my kid and Kim's kid would play together and Friday made my heart so happy! 
     I had one appt in the past couple of weeks, which was with my cardiologist. I went for a routine 6 month check-up as part of my transplant requirements. My last appt was great, so I went thinking this would be a breeze. I had a little snag. Thomas was playing with my phone and he held the button down on the bottom for a long time. When I went to make a call, the little arrow that you slide over was gone. I could not turn my phone off, answer it, open it, nothing. MY LIFE is in my phone, all my numbers, all the dates of all my appts and plans, and it is literally my LIFELINE if I get "the call." I was on my way to the medical center so I stopped at the Verizon store and asked if there was a way to reset my iphone. The lady was rude and said that bc I had a little crack on the back of the phone, there was nothing I could do. I explained that the crack had been there since I first got it and I just needed to know the "trick" to reset it. She said I had to pay more than $600 to buy a new phone. UHH, no thanks. So, then in a voice and tone used to correct a four year old, she explained that I could add a line and buy a new iphone at a much cheaper price. The whole time my heart is racing thinking about missing "the call." The reason I am so afraid is because I am now at the top of the "B" blood type list of livers!  I told her that the reason I needed a phone was due to me being on the transplant list, because if I wasn't, I would have just waited until I got back home to Pasadena and went to the Verizon store there. She lectures me about otter boxes and how I need to take better care of my phone and the whole time I kept asking about resetting my phone. She promised to transfer my contacts, which she didn't do, and the whole time she treated me like I was worthless. It is in these moments that I want to scream at people and tell them that I am by no means an idiot and I start getting self-righteous, but I held it in because none of my earthly accomplishments really matter in the long run. I go to my appt that was supposed to be busy and after doing the one test I needed, I was informed that I would need further tests. RED FLAG raised, so I asked what was going on and the doctor, who I think resembles Mr. Burns on The Simpsons asked me if I am Short Of Breath (nursing lingo SOB) all the time. I told him that the only time I am SOB is when I work-out. I was lucky enough to get an IV and after the tests, he explained the results. He said my liver just isn't keeping up like it used to. He said that the fluid is backing up into my lungs and increasing my lung pressures to the high range. I have to go back to see Mr. Burns in 3 months unless I start getting SOB and then I need to come in sooner. I asked what I could do to fix this and he said,"get a new liver."  If I had a dollar for every time I heard that, I would be rich. This news made me a little sad because I wanted to get a new liver before any of my other organs were affected. I already have a super enlarged liver and spleen. So, pray that a liver comes soon please!  This waiting game is for the birds. I have so many things left to accomplish. So, to finish my phone story, I bought a new phone and added a third line. But, after my appt, I went to the Pasadena store and 2.5 seconds after I walked-in, they showed my how to reset the iphone and my old phone was back in business. I had to go to the other Pasadena store to have my third line removed and the iphone returned to the store. There went 4.5 hours of my life I will never get back, but I am happy that I ended up okay after all was said and done.
   On a random note, I always feel like my cousin Karen's boyfriend knows everything. He is a genius, seriously. I finally found a question that Neill did not know the answer to. I asked him what kind of vinegar they use at Subway to put on your sandwhich and he did not know!!! So, my cousin Deb thinks it is red wine vinegar, so I am going to try it. Also, while I think cancer totally sucks, in a way, it has been a blessing to me. It woke me up, it made me look at my life and decide what is important, it makes me thankful for every single day, it makes me want to seize the day, it makes me want to be better, it makes me want to live, I want to live more now than I ever have before. It has made me more forgiving, harboring anger is just too hard, it has made me expect a little less of myself (like I don't always have to keep the house clean), I don't want it to be said at my funeral, "Katrinia kept a really clean house."  That is the last thing I want someone to say.  Thank you for all your prayers, support, love, encouragement, accountability, and thank you for reading. It is the coolest thing to meet a stranger that tells me they have read my blog!  I will try to be a better blogger and blog more!