LIVEr Champion

I didn't think I would ever blog on here again. Since I signed off last March, I doubt anyone looks at it anymore; however, I'm kind of glad now since I just had to add this to Thatcher's story...he is going to be the 2012 Nashville Liver Life Walk Liver Champion!!

He's even pictured in the local pamphlet.

We're kind of proud :).

Like many great causes, the Liver Life Walk aims to raise money for the American Liver Foundation who advocate for those with liver disease and help fund research. While there is no way we could ever say thank you enough for all the prayers, donations, and support we've received through Thatcher's ordeal, we hope we can at least use his story to give back a little.

We will probably always participate in this annual event, however, this year is special since it is the first time we've had TEAM THATCHER and Thatcher's story is highlighted through his Liver Champion status.

Everyone is invited to join us Saturday, SEPTEMBER 29TH at Percy Warner Park Steeplechase, Off Old Hickory Blvd across from Vaughn Road, Nashville, TN 37221. If you are interested in joining Team Thatcher simply click "Join Team" from the Team Thatcher page. You can also make a donation to the American Liver Foundation online.

We are so blessed to be able to walk this year. Much has changed in our family since my last post in March. We finally moved and are constantly working on the house now. Thatcher is continuing to do well. He turned 2 July 28th. We are due for labwork and as always hope for the best. He has had some quirky allergy issues which can be a problem with Prograf patients, but nothing unmanageable. Amelia has started preschool a couple days a week so we've already seen a little sickness through that, which Thatch has somehow avoided.

What a wonderful life ;).

Happy 2nd Birthday!

ROARRR!!! (Notice how faint his scar is)

One Year Anniversary

Here we all are, one year later! Praise. the. Lord. What a difference a year makes.

March 21, 2011

March 22, 2011

March 22, 2012

This time last year we were in Pittsburgh and Thatcher and I were both recovering in the ICU. Just the day before he was the sickest he has ever been, I had my original liver in tact, and we were preparing for his liver transplant at UPMC. We spent a grueling 8 weeks in Pittsburgh before coming home to my new life as a stay at home mom to care for my children, one of which was now on immune suppression. The first year post transplant has been filled with close monitoring, on the constant look out for infection or rejection. We have been hospitalized a couple of times for a biopsy and 1 fever, but certainly less than before transplant. Thatcher's quality of life has improved immensely and, like many parents, we do our best to make sure our kids have the best possible life they can.

While beyond grateful for the outcome and progress Thatcher has made, I would not re-live the last year for anything. This time of year will always be special to us. Spring is certainly a time of new beginnings, new blooms, warm weather, the celebration of our Lord's rising on Easter Sunday, and a new beginning for Thatcher. Happy re-birthday son!!

For me, I felt as though we have been holding our breath since transplant. Time is a big indication of transplant success so today marks a bit of an exhalation, a little relief, and all the hope in the world that Thatcher is going to be ok and live a long, quality life. I get choked up just typing this...Thatcher is going to be ok!!

Of course we can not be certain of the future. Of the many lessons we have been blessed with along this journey, one is to not worry unecessarily about the future and things we cannot control. Trust in the Lord, "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11. In fact, today's reading in Jesus Calling started off:

REJOICE AND BE THANKFUL! As you walk with me through the day, practice trusting and thanking Me all along the way. Trust is the channel through which My Peace flows into you. Thankfulness lifts you up above your circumstances.

Who can worry right?! We have experienced our share of worry but continue to pray for faith along this journey.

I have hoped this day would be coming for sometime now and have wondered how to celebrate his transplant anniversary. I've thought about everything from liver shaped cakes to having a re-birthday party! Instead I think we'll celebrate together as a family and stick a candle in a cupcake for his 1 year liver birthday. I also got him some tulips since that is what BJ sent me in the hospital and it is such a beautiful spring flower. I guess the point of today is to be grateful. Grateful for Thatcher's health and successful transplant, grateful that I could give to him and no one had to die to donate his organ, and grateful my surgery went well and I am well.

Besides giving Thatch a big 'ole hug today, we also think about and remember everyone who was there for us and still ask about Thatcher!! It is overwhelming. All the cards and gifts we received while in Pittsburgh, all the donations, everyone who helped and donated to Link 4 Life, our family who traveled with us, especially my sister and parents who brought Amelia to come visit, our dear friends who came all the way to Pittsburgh to be with us during surgery and visit afterwards. All the prayers...we will never know!!!

For these and other reasons, I think it's time to end this blog on a happy note. While we have alot of pictures, this blog is a good reminder of all the emotional highs and lows we experienced. At times I would like to forgot, but I hope it gets easier as time goes on. We are starting the next chapter...we even sold our home last month (another reason why I have not blogged in a while) which was bittersweet. It was the home where we brought our babies home, but there have been alot of tears shed in that house worrying for Thatcher's health.

The many sad moments are becoming memories now. Thatcher may never be completely out of the woods since rejection is always possible, but we will continue to live our lives to the fullest - washing our hands and taking our medicine. Living with a transplant is never something one forgets completely. In fact, we go to the endocronologist on the 10th to check and see how his thyroid level is doing on his new medicine. He does have an egg allergy and over sized adnoids due to his immune suppressing medication, but no indications he feels anything but good so we'll keep going until we hear otherwise. Definitely grateful for this day, March 22, 2012.

Here's a little montage I put together of Thatcher's first year of life. While some of the images are hard to look at, I love watching his skin and eyes get white. However, it is certainly noticeable how sick he got before transplant... then how much he plumped up afterward!

http://animoto.com/play/hyuZ1ss0uj0580NBGShzXw

The Missing Piece

What an emotional roller coaster this entire process can be! We had labs Monday morning and man were we worried sick about these! It was a terrible lab draw with 4 sticks and a finger prick to get enough blood to also run some extra allergy testing. I was already emotionally drained from holding Thatcher through that 30 minute ordeal and it was only 9am.

As I mentioned before, the doctors have been concerned about what is causing Thatcher's liver numbers to go up and down. Granted, they are nothing compared to pre-transplant readings but not perfect at times. When the November biopsy showed no rejection or other damage/issues they began looking into other reasons for the fluctuations. After speaking with the doctor last month, a family history of thyroid disease was mentioned. (I have hypothyroidism along with almost all of my immediate family on both sides). Apparently there is a relationship between the thyroid and the liver. More importantly, there is also a correlation between the thyroid and another liver disease.

I was stunned and very upset upon hearing this. While rare (we've heard that before!!) the doctors wanted to cross off this other disease so they began watching his thyroid numbers. With thyroid disease so rampant in my family and his last set of labs showing his thyroid levels were borderline I very nearly lost it. I was so worried we were going to be diagnosed with another disease! I just didn't know if we could handle anymore.

These past 4 weeks have been spent in deep prayer and wrestling with trying to enjoy Thatcher and not worry unecessarily. It seems to be so important in the medical world to make sure you have all the pieces of the puzzle and explore all options. I commend our doctors for looking into this issue! However, we were so scared of what they may find, which was very stressful for both BJ and I. I guess we thought transplant would be the worst, that it would "fix" him, but now there was this other possibility of having to endure another diagnosis. As lab day approached we grew increasingly worried, anxious, and even cranky. I know we are supposed to trust in the Lord and his plan. He has our best interest at heart, and to even worry means I'm not having faith in his plan. Even so, I hate to admit it, but I've been scared at the Lord's plan for Thatcher and our family. He does know best!!

I still can't believe it, but besides good liver numbers, Thacher's labs revealed he has hypothyroidism, like me. Normally, (certainly nothing is quite normal with Thatcher :)) this would be upsetting news, but I felt nothing but relieved it was not worse. Having had hypothyroidism (a low or non-functioning thyroid) since about the 4th grade, I guess I knew I would probably have a child with this issue. However, I always thought it wasn't so bad and such an easy fix that I never let it influence my decision to have children. Still, poor Thatcher has had enough to deal with that I do especially hate that he has yet 1 more "issue."

This is not transplant related. While hypothyroidism is quite common, I don't think it is at all common in such young children. If Thatcher didn't live under such a microscope, they would probably have never caught this until symptoms began to show delayed growth and development. If untreated, hypothyroidism can affect liver function as well. He has a new pill to take every day, for the rest of his life, but there are no known side effects and it is quite small. We just crush it up and give it in a syringe with water until he is old enough to swallow. Thank God he can take this with his other meds and that it will fix him right up. They caught it so early that there has not been time for symptoms to show. Maybe this is the piece of the puzzle that was missing!!

I feel as though a weight has been lifted. Everything is relative I guess. We have an appointment with the hepatologist Tuesday and an endocronologist for his thyroid in about 4 weeks. No doubt he is high maintenance, but check out all this cuteness. I was trying to catch him walking around in Amelia's play heels and got all this instead:

January 2012

The ultrasound went surprisingly well. Thatcher was AWESOME! He looked at the fish on the walls, played with his toys, then watched a movie on the laptop. The doctor called that afternoon to say everything looked fine as far as the liver was concerned (yay...all we care about really!) but they saw some "debris" in his bladder. We went Monday morning to give a urine culture via cath...poor guy! This was not comfortable I'm sure and Thatcher was much more upset than with labwork. His urine is fine, cultures were negative for bacteria so they are not concerned with the debris.

Our allergy appointment was last Thursday morning. I was worried about how painful the test would be so BJ joined me. Thatch had 5 pricks on his back and did not seem to mind...tough guy!! They are very small needles and feel like the end of a paper clip, said the doctor. However, he cried and got so upset every time he heard the baby in the room next to us crying. My little softie.

The allergy testing was kind of interesting. They tested him for egg and banana based on our dinner before his reaction. They did the test on his back and nothing could touch it for 15 minutes. He walked around the halls with his shirt off, and we watched as the banana mark did nothing and the EGG test grew. Yep, he is allergic to egg. Apparently this can happen with kids on Prograf. Hopefully he will outgrow it. They'll check our next set of labs to see just how allergic he is. He has eaten scrambled eggs before and does not have a problem with baked goods (thank goodness, we would be in serious trouble if we had to give up waffles). They prescribed an Epi-Pen in case he has another reaction in the future.

The doctor said it was not true that subsequent reactions are worse, however we were instructed to stab him in the leg with the pen and hold for 10 seconds while the medicine dispenses if we have another reaction. I hope I don't ever have to use it!

We have had a week filled with doctor's appointments. I even had a check up last week! Hopefully we can stay away for at least a few weeks until lab time again.

Worried and waiting

We had repeat labs Monday morning and it was quite an emotional day for me. Again, lab day stinks simply from having to get my baby poked, but I completely overanalyzed and worried myself sick...hopefully unecessarily. Liver labs were acutally better, not ideal but lower. This means we won't be having a biopsy this time. Good news, right?! Well, I'm still worried about why his numbers are going up and down, and the doctors admitted they don't really know. They have mentioned the possibility of other issues, some worse than rejection, but I'm not sure how seriously they are concerned. This is where my imagination has run wild. We have not been told to be concerned, but we are waiting to hear back on a few extra labs they took.

Whatever is at play, whatever he does or does not have, is already what it is. The Lord knows what is in store for our family and I have to trust that...so easy to say, not so easy to do. Give it up to to the Lord. I just feel so disappointed that there are other things to worry about. I do find hope in the fact our last biopsy was clean. I have to celebrate our blessings and happy times rather than ruin them with worry about the untold future.

That said, I took Amelia for her 3 year check up today and it nearly hurt my feelings to remember how easy it can be with a completely healthy child. Thank God for her health.

Thatcher has an ultrasound scheduled for Friday to make sure there are no vascular issues. This is not a painful procedure, but it is difficult with a squirmy 17 month old. As far as I know, if his ultrasound is clear we may not have labs again for a month. Again, we are still waiting to hear back on some other labs so I'm not sure if that will change anything. In the meantime, we continue to pray and work on accepting the cards we have been dealt.

Dreary

The weather certainly reflects my mood - dreary. We had labs yesterday. I hate lab day. We had not been to Vanderbilt in over a month, since 12/1. I think that's the longest Thatcher has ever gone without being inside a doctor's office! I should feel nothing but grateful, but for some reason, I think it made it even more annoying, nerve wracking, dreaded.

Labs went smoothly then we come home to check the computer every 15 minutes to see if the results had been posted. By the time they are finally up, about 9:30, my heart is nearly pounding with anticipation. Unfortunately, all 3 liver labs were elevated. Ugh!! A punch in the gut. He appears to be doing so well, but I guess we never know. I spoke with the doctor that afternoon and the fact that they are concerned makes me very concerned. We have repeat labs Monday, if they are not improved then we'll have another biopsy. They do not think this is a medicine issue.

Shame on me for letting myself get too relaxed! We knew that transplant was not a 1 stop fix and that it requires constant monitoring and adjusting at first. I have to remind myself we are not even through the first year. It is the fear of the unknown that scares me most right now. Typically, rejection does not follow this pattern of up and down liver numbers and his last biopsy didn't show rejection, or other issues. This doesn't mean another biopsy wouldn't, but Thatcher has been following this pattern for a while now...what is causing this??

Ice cream for the birthday girl

I'm afraid rejection is not necessarily the worst case scenario. I'm scared the doctors are thinking it's some other, worse issue/disease causing the numbers to do this. However, I know better than to speculate and worry...it doesn't keep me from doing it though. I'm not sure I'll let my guard down again until they figure this out.

Yesterday just sucked! Thatcher's labs were not good then Amelia vomited last night. I have no idea if we should all expect to get sick now, but here we go.

In addition, we were referred to an allergist for Thatcher's reaction a couple of weeks ago. He will undergo allergy testing at the end of this month. I'm not sure they believe it was banana that caused the swelling. Maybe not. Apparently allergies are a common problems with kids on Prograf since it also inhibits the body from fighting off allergies in addition to infection and viruses. This makes sense, however, we had never been told this before so did not know to watch for it. Thatcher has been instructed to stay away from eggs and banana in the meantime until we figure out the cause. A subseqent reaction is expected to be worse than the first.

Amelia turned 3 this month!

We just want everything to be good, normal. I can deal with bumps in the road and we'll never give up of course. That said, bad labs and allergy problems have been disheartening. Even though I know better, I feel like we've been through so much that the worst is over. Should I not feel like this?? I guess it's part of our transplant journey. Thatcher is being watched and taken care of, we have stayed relatively well so far, and we are certainly doing all we can. As always, I pray for patience and faith in the Lord. We really do have many blessings and it's so important to count them. I know what I want, but I have to trust that God knows what we need.

Happy New Year

Adios 2011!!! I would not relive this year for anything. While it has been filled with many blessings, I'm exhausted and would not wish our experience on anyone. None of us will ever be the same, but the Lord has a plan and I find comfort knowing we are living it.

Making Cookies

We had a wonderful Christmas, at home, surrounded by family and friends...it's what it's all about! Not to throw caution to the wind, but I am relieved that we made it through Christmas without any fevers/hospitalizations.

Surrounded ;)

"Cheese"

Check out that static

We did have a scary allergic reaction incident Thursday night. Thatcher ate an overly ripe banana at dinner. He begged for the "nana" on the counter (you know, the one that should have been thrown away a couple of days before). Even though he is 17 months old the kid has never eaten a banana. I've offered it a ton of times, but he's super picky. Anyway, this is what happened...

Duck lips!

We were on our way into the ER after speaking with the pediatrician then transplant, but his lips deflated pretty quickly and we were okayed to give him benadryl. We will follow up wit the docs on this issue next week and avoid bananas in the meantime.

Terrible pic, but his lips were going down

We're 9 months out from transplant now and counting down to our 1 year anniversary. Here's to a happy and healthy 2012!!!