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!