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!!!

December 2011

We did have labs again the first week of December that showed what have become usual results for Thatch - normal on 2 of the 3 liver indicators but a slightly elevated AST. They have not adjusted his medicine and I get the feeling we are low on the priority list right now, which is a good thing.

In the meantime, we are trying to be germ conscious during this busy time of year. Our Thanksgiving was a bit untraditional in that we did not see my siblings and their children because they were all getting over upper respiratory infection and coughs. We really do have simple instructions for Thatcher's care - give him his medicine on time and stay away from sick people. It's a hard call sometimes, but we cannot knowingly be around sickness. It is the unknown sickness that is so difficult to gage, church, shopping, etc. We've all been praying for the family to stay well for Christmas. Even so, this first year post transplant will surely be the most difficult, and we are willing to make sacrifices.

He was so handsome in his little suit!

That said, I feel as though Thatcher has been around more people than normal the last several days and I'm nervous to discover a fever or the tell-tell "sick eyes" indicating that he caught something. If he remains well by Friday, I'll feel a bit out of the woods. Thatcher was a stand-by ring bearer at his uncle's wedding this past weekend, went to church with us Sunday, and ran errands with me yesterday. All relatively normal activities that for us involve alot of germ-x and making sure anything that he drops on the floor doesn't go in his mouth.

Daddy & Thatch wearing his Braves hat

One pooped flower girl

Like alot of people this time of year, I have alot of things to go do and struggle with the feeling that I'm putting Thatcher's health at risk. I reason that he does not get down, touch anything, and I wash his hands often throughout our trips. To catch an airborn illness you have to be pretty close to someone's face and carseat covers keep us from touching surfaces...is this enough?? All things that run through my head. I'm certainly not complaining! I simply share this to give a more accurate picture of life after transplant. What a much better life it has been!

Thatcher is 16 months old now. He's also black and blue right now. A jumping on the bed incident and trip in the hallway left his head and nose quite swollen. They're much better now, but I was afraid he had broken his nose at one point. He'll let you know what he wants, which I often have to translate - "coo-coo" for "Blues' Clues", "cacka" for "cracker", etc. Christmas decorations have been interesting. Like most parents with children this age, the bottom third of our tree is not really decorated, almost all ornaments are plastic, and Thatcher thinks it is filled with "balls!" he likes to throw around the living room.

"Balls!"

He and Amelia love to play together, and we are super excited about Christmas this year. The whole concept of these wrapped presents under the tree is baffling to Amelia. She thinks it's everyone's birthday present and wants to makes sure everyone will share their presents with her. I've explained the meaning of Christmas and that we are waiting until Christmas to share the gifts. We even have a paper chain to count down the days, but we worked so hard on it that Amelia did not want to tear them off at firts, ha! She will be 3 the first of January and is so excited about her birthday party...um, a Tangled party. We'll see what I come up with :). I'm more nervouse about having alot of people in our house in the winter time.

We continue to pray for Thatcher's healing and for a healthy family. We are so blessed to be together this holiday season...not in Pittsburgh (as I know many families are up there in that Ronald McDonald house right now). God has taken care of our family beyond what we could have imagined. Merry Christmas!

One of Pittsburgh nurses that took Thatcher's blood pressure everyday sent us this Pirates outfit...how sweet!! He wears it even though it hurts his dad's feelings a little being such a Braves fan :)

Happy Thanksgiving

We did get to come home Tuesday late afternoon. They took a few extra cultures that came back negative. We had repeat labs Thursday morning that were slightly improved as well. The doctors are trying to figure out what to do next with Thatcher's medicine, but I'm getting the feeling that they are thinking his medicine is running high. I've just been told it is extremely hard to reach a target level with a baby's metabolism and unpredictable growth and eating patterns. We get 2 weeks off and will get repeat labs the first of December to determine any med changes.

All that to say, I think I'm ready to jump up and down just a little bit at Monday's biopsy results! Since they haven't found anything worse than rejection, I'm very glad we are not on prednisone and his liver is safe and sound right now :). We are also not in any extra danger of being admitted through the holidays or anytime soon. Praise God!! I know He knows what is best and we just have to have faith...in the good and scary times.

Biopsy

Today has been a LONG day. Thatcher is finally asleep and I'm heading there myself. Since today was a scheduled procedure, I did not realize we would be waiting around so long...why was I surprised! I was so worried about Thatcher not being able to eat before his procedure, but this did not seem to bother him tremendously, thank God! Every hospital stay is just a little different as Thatcher grows up and he was much easier to entertain yet much more active this time.

Thatcher was poked 3 times trying to get the IV even though he was given a small dose of medicine to make him groggy. This is heart breaking. I'll spare Thatcher the future embarrassment, but we do have his little dopey time on video...hilarious :) - not sure why kids on drugs are so funny!! Once they finally got him under, the biopsy went as expected lasting only about 30 minutes. Since the liver is so vascular, they place the needle using ultrasound technology and get only a small cylindrical piece - about the width of a paper clip once unfolded. After Thatch woke up, we were in holding for aound 5 LONG hours.

Long story short, we were told the biopsy showed no signs of damage to the liver or inflamation meaning there was no rejection. I knew not to jump up and down since Thatcher's liver function numbers are not doing what they are supposed to. However, we are not starting Prednisone and may go home tomorrow pending the results of his ultrasound. I'll post an update once we have a better idea of what's going on. In the meantime, Thatcher's labs were better this evening and I'm praying they figure this all out soon and it is not any worse than rejection.

Rejection

Thatcher's labs were not good yesterday, indicating likely rejection. Pretty much all of the numbers were elevated significantly. This is always a punch in the gut to see when I pull up his labs online. We are scheduled for a biopsy at 9AM Monday morning and should know if it is in fact rejection by that afternoon. If so, we will begin IV meds to treat him over a 5 day period. We will then come home on a steroid taper that will likely last through the holidays/flu season meaning Thatcher will need to be even more careful about germs while his immune system is "extra" suppressed.

This is the anticipated course of action so we will make plans accordingly and deal if things happen differently. It's hard to be positive sometimes, but I'm so thankful they can treat him so effectively. I'm also very thankful that Thatcher is not in any pain and will likely have a great weekend. I'm also super happy that we should be dishcarged and out for Thanksgiving. As always, thank goodness we live so close to Vanderbilt.

That said, please keep our family in your prayers. Thatcher will be put under anesthesia so cannot eat after midnight Sunday. Once the procedure is over, we will likely just being hanging out all week for the IV meds. Being in the hospital is always trying. I miss Amelia and hate sleeping there with nurses coming in and out to check vitals through the night. The high dose of Prednisone at first can make the kids a little "kooky" or moody but will hopefully taper off as the dose reduces. I'm also kind of dreading keeping Thatcher in his bed while he's hooked up to the IV and couped up in 1 room. At least we have the weekend to prepare and maybe this time next week this will all be behind us and we'll be coming home.

Little Stinker

Thatcher was a skunk for Halloween

When asked how Thatcher is doing lately, I reply that he is doing well, which is pretty much the case. There is still 1 lab they are watching closely, and if it does not drop within range soon we will need to do a biopsy. As always, he makes me nervous, always worrying about catching a bug, whether we should take him certain places, etc., but we try to enjoy our time at home together and make the best decisions we can about going out.

I was supposed to be Bambi along with Flower the skunk and Thumper the rabbit

Of the 3 main liver labs they watch (AST, ALT, and GGTP), Thatcher's AST has been hovering above range since the summer. The other 2 numbers have been good except for the bump last time. That said, according to the doctors, the AST is not as liver specific as the other two numbers. Meaning there are other factors that can affect the AST. I'm sure it gets even more complicated than this, regardless, it's been in the 50s and 60s and needs to get to 40 or lower.

The coordinator also commented that, unlike other organs, the liver offers more blood indicators than kidneys, heart, or lung so it does not have to be biopsied as often. In other words, Thatcher's bloodwork says alot about how his liver is functioning without having to actually look at the liver tissue. I am greatful for this. That said, this AST seems to have the docs a bit confused so they may have to go in and see what's up. They adjusted his medicine (reduced it actually in case there was some liver toxicity going on from his dose) to see if this would get the AST to lower. It does not necessarily mean it's rejection, but I'm more than anxious to get labs Thursday. Thatch once again has the signs of a small cold so I'm not sure if that will bode well for his liver function numbers...we will see tomorrow.

As always I'm praying that Thatcher is completely healed and he gets to live a very long quality life. I guess I'm kind of worried this week, but we have gotten better at going about our lives and waiting for something to react to instead of just worry. We were told early in the process that this would be a lifestyle. I guess this is what they meant. I remember when they told us that. I did not want this to be a part of our lives, but having come to terms with many things, I think we get to live a good life...especially compared to what it could be and what it was!

More than anything I want Thatcher to be healthy of course, but selfishly, I would also like to be home Thanksgiving and Christmas...just a small request :). We were in the hospital last Thanksgiving for elevated white blood counts. We have not been admitted since July, and even if we were somehow in the hospital over Thanksgiving, I wouldn't go back to last Thanksgiving for anything (yet I may need to be reminded of this at times)!! Regardless of this weeks labs,there is so much to be thankful for this Thanksgiving - that's for sure!

Still Getting Better

Friday labs were still getting better so the plan is to hold off and get labs in a couple of weeks. A cold and/or virus can certainly cause anyone's liver numbers to jump around. Hopefully we'll get Thatcher well and get his numbers right where they need to be. In the meantime, we'll enjoy our time at home and being down to only 3 meds!!

Good news Tuesday

We did NOT have to get a biopsy today because Thatcher's liver numbers were significantly lower yesterday...yay!! We were both surprised and very excited. We had labs at 3 then an abdominal ultrasound at 4 that checked blood vessels, blood flow, and bile flow to name a few. The ultrasound lasted 1 hour and Thatcher was definitely over it by the end. The doctor called this morning to say his ultrasound was good, and we will hold off on the biopsy. He gets repeat labs Friday. We are not out of the woods but very hopeful.

Today is such a blessing. Thanks to everyone who is praying for us. I just felt the need to post the good news with the not so good news. I hope we have more good news Friday.

Rejection

I did not have a good feeling about labs yesterday, and unfortunately I was right. We had an appointment with Dr. Gillis Friday morning that revealed one of Thatcher's liver numbers was elevated - indicating likely rejection. Thatcher is also getting his molars and gave us a scare last week with a low grade fever. He, Amelia, and myself have colds and have not been sleeping well. All this to say, things have been a little off for Thatch lately.

We are very disappointed at the likelihood of rejection but have the weekend to prepare for next week. We have repeat labs Monday and an ultrasound. If his labs are still elevated, we have a biopsy scheduled for Tuesday afternoon which will determine if it is actually rejection. He will stay over night in the hospital Tuesday night, and if the biopsy determines it is in fact rejection, we will be there for 5 days on IV Prednisone and meds to treat the rejection. We have not had a biopsy before. He will be put under for this and a needle will take a very small portion of his liver to examine. However, he is not to eat before the procedure, which is always awful.

Smelling Mommy's anniversary flowers

I was slightly comforted by Dr. Gillis' reaction to the elevated numbers. It is concerning, and not at all fun, but this is an expected part of transplant. 80 percent of pediatric transplant cases experience rejection. I suppose we wish we had already had our 1 incidence early on, but that is just not realistic. We knew rejection was part of the transplant process, but it is still scary. The good thing is that this is treatable and manageable. Maybe one of the bad parts is that we have to start Prednisone again as we enter into flu season/the holidays (Prednisone is used to further suppress his immune system making him more susceptible to illness).

Between the drool and the snot...his shirts have stayed wet lately

As his mother, I'm full of worry, but it is my job to be strong and take care of him. One of the most important lessons I have learned through this process is to stay calm and take it 1 day at a time. It does no good to borrow trouble and worry about the future. Pray, hope, and don't worry about the rest. I still plan for Thatcher to grow up, live a quality life, go to school, and for this to all get better every day/year we get further from transplant.

He likes to play with momma's necklaces

Fall

We saw Dr. Gillis Friday before last and were taken off 2 meds...yay!! I was especially excited about being taken off Prednisone since it is a strong medication with long term side effects. His labs were the same as last time, which is good. He is growing and gaining but still only in the 10th percentile for weight and 25 percentile for height. We get repeat labs the 22nd, exactly 6 months after transplant. We also get to drop another medication that day which he has taken since his diagnosis. This will leave us with a grand total of only 6 meds!

Future Doctor...he seriously wears this on his own all the time!

I get this view alot!

Life in the Link house is the same as usual. Pretty boring but working every day to be grateful for how far we've come. I love this time of year, but just yesterday it hit me that this time last year we thought our baby boy was perfectly healthy. We had no idea our lives were about to be turned upside down. Thatcher's 2 month checkup was on September 23rd 2010 and his Kasai procedure was the 27th...definitely the worst time of our lives. BJ and I both agree that diagnosis and all the unknown has been the worst part. Luckily, we have fared well, and I wish I knew then what I know now, but the doctors really could not be certain if we would be so lucky either. I wish I had known I had his little golden ticket tucked in my right side and that transplant, while certainly not ideal, has been Thatcher's best chance at a quality life.

I pray everyday that Thatcher continues to heal completely, lives a full life, and gets off his medication one day. He is such a funny guy. He doesn't talk as much as Amelia did at his age, but he lets you know what he does and does not want with his own set of points and grunts. He loves water, bath time, and the toilet (putting things in and taking them out!). He's walking everywhere and likes to climb things...pretty typical boy I think. There really is so much to be thankful for including a much better fall 2011!!

Go Vols!...(funny picture, Amelia likes to hide at the door before people come in)