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!

First Fever

Thatcher had his first fever since transplant and was admitted to Vanderbilt Children's over the 4th of July weekend. Thatcher was admitted Saturday morning and discharged Tuesday evening. He's better now and we're glad to be home, again. It was apparently a virus, but nothing with Thatcher is simple. All fevers, especially this close to transplant, have to be fully investigated to see if it is rejection.

Our holiday weekend began Friday with labs as usual that revealed Thatcher's white blood cell count (WBC) was high. Thatcher was acting fine, no fever, but I had a sneaking suspicion we were going to be admitted to the hospital. In the past, prior to transplant when Thatcher was a breeding ground for bacteria, a high white count meant we knew to pack our bags for at least a 48 hour stay. However, post transplant they did not feel the need to admit him over a high WBC. Dr. Gillis called Friday and said if it was a bug, it would let us know before Tuesday...it did.

The sides of the hospital bed look like prison bars when they're all the way up

Thatcher acted fussy and tired Friday night but still no fever but woke up Saturday morning early with a low grade fever. Knowing his white count was high, we had been instructed to head into the ER if he showed a fever. I packed our bags, said good-bye to Amelia and BJ, and took Thatcher into the ER as we called the on-call doctor. By the time we got to the ER, Thatcher's temp was 103 rectally. (We cannot give Tylenol until we are instructed to do so). Long story short, Thatcher's last fever was Sunday evening and none of his cultures grew anything meaning it was not bacterial and likely viral. Most importantly, his liver numbers have remained good.

Needless to say, Thatcher has impeccable timing...somthing about the holidays! Thatcher's first Thanksgiving, St. Patrick's, Easter, and now 4th of July have been in the hospital. He doesn't have a clue of course, neither does Amelia. This is such a blessing, but honestly, BJ and I take it pretty hard. We were pretty disappointed about being admitted over the holiday. Besides worrying about Thatcher being ok, the service is not the best over a holiday and it feels like the world is moving past you. I feel completely childish and selfish for feeling this way. Poor Thatcher was stuck 10 times from Friday to Tuesday!

Happy 4th of July

He is catching back up on eating and back to his old self, thank God. I hope and pray this will get better the further from transplant we get, but we are only 3 months out and must remain patient. No doubt, I blame myself partially, but I plan to learn from this and continue to be diligent in Thatcher's care and pray for his full recovery.

Our view of the downtown fireworks

The Link Family

We had family pictures made a couple of weekends ago to update the one over the fireplace taken when Amelia was 9 months old...my how things have changed! We've been through alot since we were just a little family of 3, but I am so grateful to get the opportunity to celebrate our family of 4. These pictures are so precious (great job Ashley Spears Photography!) and are especially meaningful to see everyone's smiling face together.

Click on the link for a slideshow: The Link Family ~ Spring 2011

As always, I can never choose!

Thatcher continues to do well. We had labs last Friday then again today. His liver enzyme numbers are "beautiful," meaning his liver is doing what it should with no signs of rejection. His potassium was slightly elevated and his Prograf level was a bit high as well. Prograf, his immune suppressing medication, can cause the kidneys to retain Potassium so it makes sense when his Prograf runs high, his Potassium may as well. They added a medication for this which he has taken off and on since transplant. This is a temporary issue until we get further from transplant with the hope that our Prograf will eventually be greatly reduced, minimizing any potential side effects. Rejection and infection issues aside, I suspect some of the issues we will encounter, if any, will stem from the large number of medications he currently takes. Again, I pray every day he gets off these one day!

I am officially a stay at home mom now. This is quite an adjustment for me and one I'm getting used to. (Doctors do not recommend Thatcher go to childcare this close to transplant.) I'm glad to be able to stay home and take care of the kids, but it's a complete gear change for me with it's own set of struggles. I'm actually grateful that there were no decisions to be made so I do not question what is best for Thatcher and our family. Everything has just seemed to fall into place here. The Lord continues to guide us down this path and blesses our family daily.

Nice

I haven't posted since our last clinic, but we did not have to return until yesterday, 6/17. We had not been to the doctor's office in almost 2 weeks...it was nice :). Not that I'm complaining...those docs saved Thatcher's life and continue to keep him in top shape. Once again, labs indicate good liver enzyme numbers, biliruben, and a proper Prograf level. He's up to 19 1/2 pounds and now in the 15th percentile (meaning he's bigger than 15 percent of other 10 month old boys). His blood pressure is remaining within the proper parameters when I take it daily.

There were no med changes after labs Friday and we will return for labwork next week without having to meet with Dr. Gillis, our liver doctor. We didn't really have any major concerns to discuss with Dr. Gillis and she reminded me that this is a good thing, to forget about Thatcher's condition sometimes. (I don't really know what to call it...a "condition," "situation," but I do know he no longer has liver disease).

We have ventured out a little more in the last couple of weeks, which has also been nice. It can also make me a little nervous but that's part of it I suppose.

Me and my new newphew Caleb & Mom and Thatcher visiting family at my sister's house

All Ten Grandkids...10 under 10

I will say, Thatch has been on my hip for the last 10 months and has grown quite comfortable there. I'm trying to get him used to not being held constantly, but it's taking some work. I would not have done anything differently so I understand the repercussions. Amelia helps entertain him alot.

Amelia is doing well - almost as if nothing happened already. We're back into the swing of things it seems, the kids maybe a little more than me. I even got to potty train her last week and go get her hair cut - things I didn't want someone else to do while I was gone. My list of things I wanted to do when I got home doesn't seem to be getting done so I'm going to have to learn to be more efficient with 2 babies.

We continue to be blessed and I feel as though it's still sinking in...all of it. The magnitude of Thatcher's situation, all the support, and what we have all endured. God continues to be with us. I know we are not done. Thatcher still takes 9 meds, although we do hope several of them will drop off around September (6 months after transplant). One of the many lessons I have learned through this process is to not let worry and the unknown take over. Living day to day is a state of mind and takes prayer and faith. I continue to pray for continued good news and successful labs next week.

Keeping On

We had another good clinic last Friday. Thatch gained some weight and his liver labs came back good. His Prograf (immune suppression medication) level was too high again so they reduced his dose through the weekend and we went back to get it checked Monday morning. It is very difficult to regulate this medicine's level in babies because they are constantly growing and changing the amount they eat, all of which affects how the medication metabolizes in the body. This is one of the reasons he his monitored so closely.

His labs from Monday morning were good and his Prograf level was back down to the appropriate range (between 6 and 8). We have labs and clinic again Friday. If his levels remain good, they will consider spacing out visits/labs...yay!

We have been so blessed with good news lately that I try to remind myself to stay grounded. I find myself walking the line between being positive and realisitic. I'm sure we will not escape all clinics with a good report but who knows. Whatever the outcome, the same truth has remained throughout this ordeal - the Lord is in control and has a plan for Thatcher and our family. He has blessed us tremendously and held our hand every step of the way, even when we have doubted. We have reason to hope in the future. Thank God.

We are still enjoying our time at home in between doctor appointments. As expected, we do struggle with what is acceptable and safe to do with Thatcher. His immune system is suppressed so this makes him more susceptible to getting sick and/or staying sick. It is certainly not as simple as this, but basically, it is our understanding that being around sickness/sick people is the worst thing for Thatch. We have incorporated hand washing and sanitizing into our daily routines, but we cannot live life in a bubble - nor do we want to.
We were assured that Thatcher will get sick, as all kids do, but this time right after transplant is most crucial. It's all a balance and gets better the further from transplant we are. We hope and plan to give Thatcher and our family the most normal life possible but we have to be patient through this first year at least. This may mean skipping out on certain events, family reunions, etc., but we've certainly invested alot in this liver and want to do what we can to protect it!