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)

Update...better numbers

Thatcher's last set of labs were better and trending down. We return to the liver doctor 1 week from Friday, September 9th. Thatch also had his 1 year check with the pediatrician and a dermatologist appointment in 1 day last week. He was prescribed a cream for his rash and it is getting much better. He has sensitive skin and the prednisone was making it worse. Hopefully he'll get off Prednisone soon and not need the cream.

Been meaning to post this sooner, but not really much else going on, luckily! We joke that labor day is coming up and since Thatcher doesn't have the best track record with holidays we are somewhat nervous he will be admitted. No indication we are headed in as of yet.

August Update...More Labs

Just a quick update on Thatch for those who may occassionally check in to see how he's doing. We've actually been back for repeat labs since my last post. We didn't get the 1 month off as I'd hoped. In fact, we'll be going back for labs Wednesday to get another check. I spoke too soon after our last visit. Thatcher's labs weren't quite perfect so they are keeping a close watch.

There are 3 liver labs we watch for rejection (among other labs they take that measure various other functions) the AST, ALT, and GGTP. 2 of these were in the proper range but the AST was just slightly elevated both times. Another lab we don't normally pay attention to (Alk Phos) was also up. The Alk Phos is a liver indicator but it is also elevated when children are growing (for instance, it's usually high in kids going through puberty). This along with a couple other things have raised the doctors eyebrow a bit so they are watching him. I have been told this is not considered rejection, but they did not want to go a whole month without looking at his numbers just yet.

Honestly I am a bit worried (as his mom this is my job) but am trying to not borrow trouble and continue to give him the best care I can. Best case, he is growing and outgrew his dose of Prograf. They increased his dose slightly so I hope this has corrected the AST by Wednesday labs. I don't like to go into worst case unecessarily, but there is a potential for a liver biopsy if they can't figure out what is going on exactly. I've been praying for good numbers and no biopsy.

Thatch has also had a rash on his face for a couple of weeks now. I'm not too concerned, and I attribute it to his new teeth and all the drool from his molars coming in. Otherwise, Thatch is doing well. He even took his first 4 steps on the 9th! Our whole family was around cheering him on :).

Please say a quick prayer Thatcher's labs are good this week.

Happy Birthday Dear Thatcher

Happy first birthday Thatch!! What a first year you have had...you have certainly earned the right to celebrate. Yesterday held special meaning for the Link family. While all first birthdays are special, there was a time when we were not sure that Thatcher would reach this milestone so we were particularly grateful for July 28, 2011. To avoid germs in the house, we decided not to have a first birthday party for Thatcher. Even though I realize Thatcher hasn't a clue about first birthdays, I was disappointed. However, we ended up having a wonderful yet not completely uneventful day.

I got a new swing!

My Turtle cupcake cake

Thatcher definitely got the hang of eating his cupcake...the bathwater was green!

And Amelia got the hang of "helping" Thatch open his gifts

Our Family

Several people dropped in to say happy birthday and bring sweet sweet presents...thank you!! While my sister-in-law and kids were visiting, Thatcher gave us a choking scare that involved me digging very deep into his little throat, holding him upside down and beating his back, then calling 911. He is fine, maybe has a little sore throat, but he scared me to death. I didn't see him eat anything so I'm not really sure what happened and will admit it may have been an over reaction on my part. However, in the midst of my panic I screamed out to Jesus, literally thinking, "We are NOT going to lose you on your birthday to choking after all we have been through!!" This kid is going to be the death of me.

Looking back over the past year brings mixed emotions. I still look at pictures of when I was pregnant or pretty much any time before we knew of Thatcher's illness and feel sick. This is getting better, but I think about how much our life was turned upside down. I would not want to relive that for anything. I feel as though we are a happy ending, even though the ending is nowhere near. Everything else is just icing on the cake! Here are some pics of Thatcher by month and before his arrival.

1 Month

2 Months

3 Months

4 Months

5 Months

6 Months...getting pretty sick

7 Months...sicker and sicker

8 Months...getting better!

9 Months

10 Months

11 Months

12 Months

Besides the choking incident, a great birthday was followed by a great clinic visit today! I have not officially heard back from the doctors, but what I can tell from his lab reports everything looks good to me. We do not have to go back for a whole month! He had labs, and we saw Dr. Gillis briefly. Thatcher is just under the 20th percentile in height and weight...yay Thatcher!

I talked with Dr. Gillis a little bit about the future. I always pray that Thatcher gets off meds completely one day since I had heard of this happening with some kids. I asked Dr. Gillis if I was off base in hoping for this (even so, I would have still prayed for it :)). She said there is certainly a good possibility - especially with the kids transplanted as babies like Thatcher. We are still on track to drop down to about 1 or 2 meds in September, 6 months post transplant (we celebrated 4 months post transplant on 7/22). I am really looking forward to this. By the time he is school age or maybe a little younger, she mentioned the possibility of just once a day dosing. Also by this age, his level of immunosuppression should be much lower than it is now, meaning he will be less susceptible to infection. Praise God for this hope and good news today.

What a year. I like to think Thatcher just got off to a rough start and things will only get better for him. As his mother, I hate that he has suffered and gone through some of the pain he has endured but am grateful he will not remember this. The Lord has provided for Thatcher and our family through friends, family and complete strangers in ways I didn't even know to pray for. He is so good. I'm sure Thatch was put on this earth for a reason. He has certainly already had quite an impact and changed our family forever. I am still so humbled to think of all the support we've received. I pray God uses us for His glory and that we are able to be his instrument to others as well.

Happy Birthday little man!