Here's to Another Boring Week

Our first week home was wonderful - even better than I remember! We've enjoyed getting readjusted to a pretty normal and boring life of playing outside, eating our meals together, keeping house...lots of things I missed while we were gone.

May 25th...fell asleep in his jumper!

Both of Thatcher's doctor's appointments went well last week. Nothig much to report from the pediatrician. She didn't even recognize Thatch in the waiting room. He is in the 10th percentile and still catching up (we're excited he is back on the chart!). She was pleased with his growth and that his height and weight are proportional. There are no developmental issues indicating a need for physical therapy. He is not even behind on his shots but cannot get live viruses like the MMR and chickenpox.

Today...loves to pull up on everything

I was somewhat excited for Thatcher's first liver clinic back at Vandy. I wanted to show off how good he looked and was anxious to get his lab results. We are still under Pittsburgh's care until they officially hand us over to Vanderbilt so we communicate with both facilities while we are in transition. I feel confident in our care here at home but it still felt strange going in on this side of transplant. Everyone welcomed us back and thought he looked great.

Labs are no fun, but they got it in 1 stick. He is continuing to grow and his liver labs came back good...wonderful news! There were medicine adjustments and we are continuing to monitor his blood pressure, which is also staying where it needs to be.

For the first time, it feels like we are incorporating Thatcher's transplant into our lives and not the other way around - a first step in the right direction I think. We will continue our daily routines with medicine at 7:30 am and pm and have reason to believe we will be in the hospital much less than before transplant. We will continue getting weekly labs for a while but may not have to see the doctor every time.

Thatch's new trick..."the claw"

Thatcher and Amelia both continue to be a joy and seem to really love one another (they both have their moments :)). We are taking 1 day at a time trying to balance "normal" life and transplant. At times, it is easy to forget Thatcher's condition but it is so important to remember his daily care and do our best to wash our hands and keep him well.

We're Home

We arrived home, back in the great state of Tennessee, around midnight Friday night. The ten hour drive went surprisingly well. Thatcher slept the first couple of hours and we only had to stop and take breaks a handful of times. It all kind of felt like a dream really. I'm not sure how to describe it, but it was one of those days we had been looking forward to for so long and it had finally come.

We came home to a banner, ribbons, and balloons...thank you Aunt Jenny, Uncle Gabe, and kiddos! Amelia was excited to see me and has been so loving. Honestly, the first night back was rough. Thatcher did not want to go back to sleep once we arrived and was completely freaked out. Who knows, but I do not think he remembered the house. He kept staring at the ceiling fans and was completely distracted at first. I felt like I was in slow motion all day Saturday. Mom watched the kids so I could nap (thank you!) and we had several visitors come by and bring food.

BJ and I have been living separate lives the past 2 months that we are now trying to re-merge. It was only 2 months so things didn't change completely, but Thatcher is a different kid and we've both been doing things our own way. I just kind of observed BJ and Amelia over the weekend but today was my first day with the kids. It went great, and I really enjoyed it. The cicadas are out in full force and have been here to welcome me back too :).

We've only been home 3 days now but things seems to be falling in line already. Thatch is sleeping well at night, only getting up around 1am for a bottle then again early morning. He doesn't nap much, but I think he is just too busy! He pulled up to his feet Saturday, is crawling all over, loves pulling the magnets off the fridge, gets in the middle of Amelia's toys...all normal little brother, baby stuff. So wonderful!

We have an appointment with his pediatrician tomorrow since he missed his 9 month well check and an appointment with the liver doctor Friday. He still needs lab work once a week while he is being weaned off the Prednisone. The pediatrician will assess him for any developmental issues, but I'm not particularly worried...I think he is doing great! We feel overwhelmed with blessings that our life could be this good again. It is great to see Thatcher feeling so well, back at home.

Going Home

We're coming home today!!! I've looked forward to the day that I could say that for several weeks now. We found out yesterday after clinic. It was somewhat unexpected to get discharged yesterday but definitely a pleasant surprise. Thatcher is continuing to gain weight and the doctors decided his immunsuppression could be handled from Nashville. It's been a little hectic since we got the news that his labs were good and we could go home. I've been packing and cleaning, and BJ flew out this morning. He will be here soon to help us load up and drive home.

I'm praying for safe travel home. I'm also praying that Thatcher stays well. I have some sort of cold/congestion/cough going on and hope I do not pass it along. We are to continue weakly labs at home while he is being weaned off the Prednisone. We are also supposed to visit our pediatrician once home to catch up on his overall care and development.

I think I'm still sort of shocked we're coming home today. We would have been here 2 months tomorrow, the 21st. We have come so far and have been so blessed along this journey. I'm glad Pittsburgh was here for our transplant needs but have never been so excited about coming home in my LIFE. TN here we come!!

I haven't taken many pics in the last day or 2, but here is one of Thatcher helping me pack.

Hannah Visits

My dear friend Hannah came up to visit this past weekend. It was so great to see her. We were college roomies at UT. Hannah has been so supportive through lots of things in my life :), but especially through Thatcher's sickness. Her faith in God and in prayer has inspired me during this difficult time. Thanks for coming to see us and help the weekend go by faster Hannah! Thanks for taking and sending these pics too.

She is so good with Thatcher!

We also got to see Kate. Kate is from Pittsburgh and also went to UT. She invited me and Thatch over to their beautiful home. It was great to get out and long over due (I have to pay for each day we park so when I paid to get the car out, it had been 15 days since I had driven!!)

Hannah & Kate

Playing at Kate's

LOVE this one

Another Clinic Down...2 to Go??

Thatcher had a regular clinic check up yesterday. I had been anticipating this visit and was fully prepared to give my speech on how we are ready to go home whenever Thatcher could be released safely. The surgeon said he didn't see why we couldn't be released in a couple of weeks assuming things are good. He commented that Thatcher has done well except for the little bit of rejection and increased blood pressure from the Prednisone. 2 weeks puts us coming home the last week in May as we had anticipated. This is all of course if Thatcher continues to do well.

Love this pic of Amelia...Mommy will be home soon!

Since Thatcher's pick line is now out, they had to stick him :(. They got it on the first try but had to dig a little. (I can't wait till I can bribe him after these!) He gained 1 pound since last Thursday and is now a little over 17 and a half pounds. Thatcher had been having 6 to 8 dirty diapers for the last couple of days. I attribute this to his increased eating, but they are testing his stool just to make sure it's not a bug. We havent' heard anything on this.

Last weekend, 5/6/11

Thatcher eating today

More good news was that Thatcher's liver levels are good...praise the Lord!! However, his Prograf level is too low (3, but needs to be between 6-8). They aren't sure exactly why, but it could be all that he is eating since food in the stomach affects how this medicine is absorbed. For this reason, we went back to the lab this morning to get another Prograf level. I asked if they could prick his finger instead, since they were only checking his Prograf level and not all the other labs. Well, this turned out to be a terrible idea! It was super messy, Thatcher did not like having his finger held while they milked the blood out, he ate his band-aid off and got blood everywhere, then they called me to say his blood clotted so they couldn't get the reading. We have to go back in the morning to get his blood drawn again! Ugh. Well, everything is relative and this is not so bad in the scheme of things I guess.

Thatcher on the go...he likes to go get the lamp chord

On the Move

Thatcher has worn me out today! Whew, he is all over this little bitty apartment now. Everything is still pretty exciting and special with Thatch. He has been through so much, but it never ceases to amaze me at how resilient he is. He has some catching up to do; however, I think he does really well considering the catch up he is doing with his weight and muscle tone. He is probably just now feeling good enough to really play around.

He rolls, flops, and army crawls his way around but has not actually crawled yet. He sat up on his own today for the first time, which has opened up a whole new world to him it seems. He is definitely on the go and does not stay on his blanket for very long. I managed to get a few pictures on my phone today and wanted to share.

He made his way over to the Wii controler

He ended up pushing this chair almost around the room!

They removed Thatcher's pick line Monday. He was in such a good mood and didn't make a peep...not even when the dressing came off. He can have tub baths now so he REALLY enjoyed splashing around in the sink (I think I got a bath too :). We still walk to clinic to get his blood pressure taken everyday and all of his readings are good (usually below 110 on top). The nurses have gotten to know him and call him "Benji." I haven't had the heart to correct them...it's kind of cute.

The days are moving slowly but at least the sun is shining here for a change. We have gone walking outside along the sidewalks the last several days. It feels good to get out so we stay out as long as Thatcher will allow. There's a HUGE cemetery directly adjacent to Children's Hospital that we walk through sometimes. It's less noisy than the street with nice paved walkways. It's kind of peaceful rather than creepy, as I had initially thought.

We are just looking forward to clinic and a good report Thursday. I'm also looking forward to my friend Hannah's visit!!

Happy Mother's Day

Happy Mother's Day to all the mom's out there! It's a special job, responsibility, and privilege to be Amelia and Thatcher's mom. Like most mothers would say, it's the hardest job I've ever had, but I learned from the best! My mom is a mom in the most traditional sense of the word. She's the ultimate care giver and one of the most patient people I know. She's the person I call to vent to and is really the glue that holds our family together. Love you ma!

Mom & Thatcher

I've only been a mom a couple of years now, but it is a role that defines me. Maybe it shouldn't so much, but this past year my kids have needed me more than ever, and I thank God I can be there for them. Even though I've had to be far from Amelia since the surgery, I'm blessed that she has been able to visit fairly often.

In fact, I got to have both my babies here with me this Mother's Day! Amelia and BJ came up Thursday and left this morning. It was particularly difficult saying goodbye today. The four of us hadn't been together in a while so it was such a special visit. I hated to see them pull away in the cab, but I hope it was Amelia's last visit and that Thatcher and I will be home soon. I know it's mother's day, but BJ is such a good daddy and has taken up his role as Mr. Mom so well. I can really tell he and Amelia have bonded :). Here are a few pics from the weekend.

Outside of the cafeteria

Watching a movie with her new earphones

Amelia got a new bug catching game

Thatcher loves puffs!

Since they arrived Thursday, I did not have time to post that Thatcher's lab results from Thursday's clinic were good! This is great news. I must say, I was nervous since last time Amelia came up, Thatcher's labs were not good and he was hospitalized. Thatcher is gaining weight, eating well, and his blood pressure is being managed with medicine. They changed the dressing on his pick line (he does not like this poor guy!). We will go to clinic tomorrow to have them take it out since he had another negative CMV reading (meaning that through the high immunosuppression, the CMV, and other viruses that can creep up, did not) and has not used the line in over a week.

Our next clinic visit is Thursday. A few more good ones should lead to us being released back to Vandy (**fingers crossed). It should also mean clinic visits may become fewer and farther between. The plan is to gradually reduce the steroids and hope that this does not result in rejection.

All in a Day

As I have mentioned, the weekends are particularly lonely around here, a reminder that people are home and we're not. However, we kept surprisingly busy Saturyday. We made the trek to Target where I bought Thatcher this walker. He liked the one in the hospital so much, and I could use another place to set him/contain him. He really likes it for short periods of time. We strolled around outside some, I gave him a bath, he played on the floor, ate...the usual.

I wouldn't call our "usual" boring because Thatcher really keeps me hopping. He eats more than ever so bottles and baby food are always flowing. He plays on blankets on the floor alot and I generally try to wipe his toys down once a day. Not to mention the diapers (which are now super smelly!) Thatch has started sleeping on somewhat of a schedule, mid-morning, afternoon, and going to bed at 9.

We obviously spend time going to doctor's appointments (although we only have 1 this week!) and 1-2 hours/day with medicine, blood pressure taking, and temperature readings. Apparently they don't sell or even make infant bp cuffs, so I bought this handy little wrist cuff that works on Thatcher's arm. It's surprisingly accurate too. I take 3 readings and average them when we can't go to clinic and get readings. We are supposed to take his temperature 2x/day as well. All in a day's work :).

Sunday was much more quiet and gloomy...it is so cloudy here! It does not help the overall mood. I thought I noticed a little dry cough from Thatch too. He's drooling like crazy from teething right now so his hands have been in his mouth more which makes me extra nervous. I'll pray he stays healthy, it's just extra nerve wracking. Normal baby stuff isn't always so normal with him.

No doctor today. Just counting down the days until BJ and Amelia come up this week and for clinic Thursday.

A Merry May

I have been struggling lately with being very homesick - homesick for my family, Amelia, my house, my friends, Tennessee, the weather, my bed...you name it. I don't like to use the blog to complain (I generally call my mom or BJ for that :)), but it hit me the other day that I'm starting to get used to this, which only made me more sad. We use Skype, which is a little challenging with 2 squirmy kids and not the best internet connection, but it helps. BJ is doing his best to keep me updated, but he is a single parent too right now. Like he says, one of the hardest parts of this is being displaced. Yep.

Miss you guys!!

However, we really have not been here that long (6 weeks Tuesday) and don't anticipate being here a whole lot longer. Today is the first day of May - the month I hope we get to come home! I find myself thinking of coming home more and more to the point I feel the need to reign myself back in, not get my hopes too high. This is certainly not over once we get home, but I just know it will be less lonely and easier to handle from home.

I even find I'm already taking his progress for granted! I don't think I could ever forget this experience, but as Thatcher continues to improve I wonder if this will all be a memory one day with our scars as faint reminders...God willing, right?? Thatcher has taught us so much in his first 9 months on this earth, but I certainly don't want his liver transplant to define him. I'm sure he has so much to offer. As he develops, like all babies, I'm getting to know him and his personality. I think more about how this experience affects Thatcher, not just ourselves or "the baby."

It's funny what comments stick with you - some profound, others not, but early on in the process (right after our diagnosis) I was speaking with our pediatrician on the phone and she said, "I don't see why he couldn't climb Mt. Kilamanjaro one day." Ha, over his mother's dead body (I can just hear me asking him if he remembered to pack his medicine), but that hope for the future certainly carries me through most days.

As Thatcher continues to progress - gaining weight, sitting up, scooting and rolling everywhere, pulling his knees under him, I can't help but think every thing is just a little more special with him. He has certainly not had a traditional first year (something else I struggle with at times) but he is certainly not the typical 2nd child either, being overlooked or maybe not celebrating milestones as much. Everything with Thatcher is a milestone! He is just a little miracle. Really, to think they took a part of my liver and put it in him, like a car part, started it up, and it actually worked!! Miraculous.

I guess I have to remind myself sometimes when I'm feeling sorry for us. God has showered us with blessings through this ordeal. He has truly helped us bear this cross. Through the immense support of family and friends and Thatcher's miraculous improvements I am reminded of God's power and mercy. We have come so far. Several things have crossed my path lately reminding me that things could be worse or simply that things were worse and they are now better. There was a time we weren't sure if we would keep our son or what kind of life he would have, nevermind climbing Mt. Kilamanjaro. We still don't know of course, but I find myself dreaming a little bigger for our lives than I once did...HOPE, so important.

In fact, I've started making a list of things I want to do when we get home. I won't share it since it's kind of embarrassing. It's really a to do/shopping list that consists of little things from sewing to running to "wine...lots" but I do think everything will be just a little sweeter once we are home. I'm sure I'll find myself complaining occassionally (I'm human). Thatcher will likely be admitted to the hospital again, especially during this first year, but I'm grateful to the dear Lord for the precious time we have with Thatch and for all he has taught us and will continue to teach us.