Thank Me for Your Problems

One of the many lessons we are learning, and of particular significance to me, is not to worry about things out of our control and to live in the present moment. Sometimes the present is quite scary but most other times it is enjoyable. Unfortunately I have spent too many enjoyable moments worried about the future and impending transplant. It is on our minds constantly.

Living in the present requires a greatful attitude and counting our MANY blessings. It also calls for patience. Our timing is not God's timing so I try to stay positive in the meantime. This is all easy to say, but not so easy to do. I have found comfort in the popular book by Sara Young, Jesus Calling, that revolves around this theme of thankfulness and living in the present. It is a daily devotional based on scripture meant to enrich one’s personal relationship with Christ.


I remember one day in particular that it brought me much needed comfort. It was the day I found out that Thatcher might begin to itch with this condition. I was devastated to think of him in this uncomfortable state. My mind began racing from one terrible thought to the next...Dear God, please don’t let my baby suffer. I wanted to be comforted, told it was going to be ok, so I opened this book and here is what I read:

THANK ME FOR YOUR PROBLEMS. As soon as your mind gets snagged on a difficulty, bring it to Me with thanksgiving. Then ask Me to show you My way to handle the situation. The very act of thanking Me releases your mind from its negative focus. As you turn your attention to Me, the problem fades in significance and loses its power to trip you up. Together we can deal with the situation, either facing it head-on or putting it aside for later consideration.

Most of the situations that entangle your mind are not today's concerns; you have borrowed them from tomorrow. In this case, I lift the problem out of today and deposit it in the future, where it is veiled from your eyes. In its place, I give you My Peace, which flows freely from My Presence.

~ Philippians 4:5; John 14:27

Peace is a gift that I pray for often. Thank God so much of this is out of our hands and in the Lord's hands. Even though, it is still hard to have Faith in God's plan. Through His Peace and our many blessings, I'm reminded daily of His control and loving presence. I think God speaks to us...between this and my fortune cookie, I'm a BELIEVER :).

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The World’s First Successful Living-Donor Liver Transplant

(This picture cracks me up! I hope BJ and I get to look back on something similar for our story one day)

The internet is such a double edged sword. While we can educate ourselves on any topic imaginable, we are also bombarded with uncensored information when ignorance can truly be bliss. As I have mentioned, I learned very quickly to only “google” successful liver transplant stories. In doing so, I ran across this story of Alyssa – the first successful living-donor transplant: http://www.uchicagokidshospital.org/specialties/transplant/patient-stories/alyssa-liver.html

I LOVE this story and it cheers me up every time I read it! I hope and pray we have a similar story one day. I would love to be able to share it and give hope to others. If you don’t get a chance to read it, it is the story of the first successful living-donor liver transplant that occurred in 1990. The mother donated a piece of her liver to her daughter Alyssa who had biliary atresia. Alyssa was around 1 year old at the time of her transplant. At the time this story was written in 09, Alyssa was in college. I love the attitude the family seemed to have about the whole thing and how normal it sounds like Alyssa’s life turned out to be.

Thank God you for the living-donor option. I pray Thatcher is healed and that our transplant is a success!

Clinic

We had clinic at Vandy today. It was a bleak reminder of how sick Thatcher is. He gained a little weight but not enough. He is starting to fall below his normal trend and will now need to add an additional bottle of milk with Pregestimil which leaves me only nursing him a couple times a day. During clinic, we go over medicines and how Thatcher has been doing to adjust accordingly. He had labs drawn which took 2 sticks today...terrible! I don't know if I'll ever get used to the bloodwork. In all, not a great clinic day.

Dr. Gillis has now spoken with Thatcher's surgeon in Pittsburgh, Dr. Mazariegos, and wants us to begin coming to clinic on a weekly basis. Thatcher's condition plays a role in scheduling the transplant so he will be monitored closesly. We're now waiting to hear from the surgeon next week and are anxious to get his take on a timeframe. We don't understand completely but don't want Thatcher to get worse. We are just ready to get this show on the road now that we've got a liver. I'll just keep it warm for him until then :).

Approved

RELIEF: That is the best way to describe how we feel about the news that I am approved to be a living-donor for Thatcher!! Pittsburgh reviewed my case yesterday and told me I was approved “without reservation”...just like the ole fortune cookie said, “A Perfect Match.”

The next step is to schedule the two surgical teams. My surgical team will contact Thatcher’s surgical team, headed by Dr. Mazariegos (http://www.chp.edu/CHP/Mazariegos%2C+George+V.%2C+MD+) and pretty much say, “We have a liver for Thatcher, when do you want it.”

Dr. Mazariegos

We will likely be contacted with some dates that work for the two surgical teams then choose when we can come up. Kind of strange to schedule such an event as though it were a C-section or tonsillectomy, but I’m sure this will be less hectic and less stressful than waiting for a cadaver.

I feel as though a weight has been lifted now that we have found Thatcher a liver, yet we are nervous and scared at the same time. We realize this is just one step along the way, but it is a small victory and gives us such hope. Today was definitely better news than the alternative. Praise God for the living donor option that allows me to give to my sweet Thatcher!

Still Waiting...

Pittsburgh did not call today. They also did not call to say we were bumped so maybe we will hear tomorrow.

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Flip Book

While we do not want Thatcher’s condition to define him or our family, it certainly impacts us all, including Amelia. Many people have asked how she is handling this, which is big concern for me as well. Currently, she does not have much of a clue that anything is “wrong.” She sees Thatcher take his medicine everyday, but when we are home and living our daily routine of work and sitter, Amelia is the typical big sister who will kiss Thatcher on the head one minute then take his toy the next :).

Amelia & Thatcher

No doubt, this is a part of her life as well and will mold her into the person she is meant to be just like the rest of us. (I think she or Thatcher will become doctors and help other sick kids one day :)). Since Thatcher’s first hospitalization in September, Amelia has had to deal with mommy or daddy being gone for a few nights. She’s been to visit Thatcher in the hospital a few times as well.

Amelia visiting Thatcher - Thanksgiving 2010

This quickly taught us that hospitals are not very good places for toddlers! While she matures a little more each day, she will likely be around 2 ½ years old when the transplant occurs. I have asked doctors and family and friends for their opinions on how best to handle, and how to help Amelia handle, our long stay in Pittsburgh. Amelia loves pictures, so one suggestion I liked was to make a picture book to remind Amelia how much we love her even when we’re not around or just remind her of home when she’s in Pittsburgh with us. Below are some pictures from the flip book I made her:
I hope to not have to be away from Amelia for very long periods of time, but it is impossible to care for a toddler in a hospital and really not fair to expect Amelia to behave in that setting. I also do not want to shuffle Amelia around between people she may not know very well on top of uprooting her. It scares me to think of her traveling such a long distance without me or BJ too. These are all things I pray will work out. We are so fortunate to have great help, especially from our parents. No doubt it will be difficult, but I hope to manage to make a home in Pittsburgh as best we can for a little while.

Link 4 Life

So many people are here for us, praying for us, and helping us through this difficult time – some we are aware of and others we are not. It is so touching and more than appreciated...it is truly needed. Thank you.

One such act of love and support has come from our dear friends who are organizing a "Link 4 Life" 5K Run and 1 Mile Walk and silent auction in honor of Thatcher. It will be held at Smiley Hollow in Ridgetop, TN on Saturday, April 23 at 8:00 a.m. Everyone is invited to participate in an effort to raise funds for Thatcher’s transplant related expenses including medications as well as food and living expenses for our extended stay in Pittsburgh. If you are interested, please visit http://www.link4life5k.moonfruit.com/. For all you Facebookers, there is also a page dedicated to the event: http://www.facebook.com/#!/event.php?eid=190268637659711.

The flyer for the event

We are so blessed to have such great friends who care enough about us to put such a great event together. It is no small task I’m sure. BJ and I are both touched by the response, and I know God is working through them. I feel as though I’m learning how to be there for others as our friends and family carry us through. I pray that God uses us for His glory and that I can return the kindness one day. Friends, family, and even complete strangers check on us, let us know they are praying, help care for Amelia, offer a shoulder to cry on, and have given donations. We do not take this for granted and want people to know that we not only appreciate it, but they can trust any donations will be used to help heal Thatcher.

Fundraising was mentioned by our doctor pretty quickly after Thatcher’s need for a transplant became evident. While we are blessed to have good insurance, many things are not fully covered including post-transplant medications. We were told by insurance that medicines post-transplant can cost in the range of $400-$800 monthly out of pocket, and he will take medicine for the rest of his life. Many expenses will also be incurred from our extended stay out of state including food and travel expenses. We do have an insurance benefit that helps with travel and lodging but does not cover food. Plus there are co-pays and out of pocket maximum’s each year. I will also have to quit working to care for Thatcher eventually. Not only is this a strain on us, but we lean heavily on our parents to help care for Amelia so we hope to be able to help them help us.

BJ and I also put some thought into how to accept donations for Thatcher. This issue proved to be more complicated than originally anticipated. For example, setting up a trust is quite complex with IRS regulations and the need for an attorney. A checking account in Thatcher’s name simply makes it more difficult for us to use the money as we see fit and could potentially harm his chances to be eligible for future assistance, as it would count as his income. We looked into several options, each with their own pros and cons, and decided on a separate checking account set up in our name to be used for Thatcher. While this is not tax deductible to the donor and may not have as many regulations to help in the transparency of the use of funds, this allows us the easiest and quickest access to money for everything from gas, to air fare, to food. Expenses will not have to be approved or reimbursed by an outside party.

We set up a “Link 4 Life” account at the Farmers Bank in Ridgetop with locations in Robertson and Sumner counties as well as a “Friends of Thatcher Link” fund at Bank of America. If you would like to donate, you may do so at any Farmers Bank or Bank of America location. Both accounts are in our names (Benjiman or Jessica Link).