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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.