•May 22, 2014 • 18 Comments
Today marks the anniversary of Sophie’s liver transplant. It’s been 3 years since a gracious family gave the gift of life during their most difficult time. It’s always hard to express the feelings this day brings, so I thought I would share the journal entry that I wrote during my morning quiet time.
“Thursday May 22, 2014:
Thank you for life. Today, I’m reminded of how scared I was 3 years ago as Sophie went back with the surgeons for her liver transplant. Being told that this ‘might‘ work, but if they didn’t try it would be fatal. Lord, you know the intricacies of her body and how complicated things are, but they are not complicated to You. You knitted her together and You guided the doctors hands and ultimately You chose for the process to work. Thank You! A hundred times, thank you.
There is a very special family that will always feel a sense of loss during this time. Lord, I pray that in time you can turn their morning into dancing. Only You can bring healing, peace, and comfort to their souls. God bless this precious family. Let them know that you bring comfort. That some how, some way, they can feel honored that their sacrifice still lives on and plays happily in my front yard. What a miraculous gift. What a precious blessing. What a divine connection. I am forever grateful. God bless our donor family. ”
•September 24, 2013 • 4 Comments
Nothing!! Yay! So I haven’t been up to date. And I’ve had some people ask what’s happening. I apologize for falling behind. But we have had a nice quiet summer. No changes. No updates.
Lil’Sophie (who’s not so little these days), had her typical-every-4-month bile stent change surgery a couple of weeks ago. All went smoothly as planned. Hopefully, she won’t need anything again until January. She has some follow-up appointments coming up in October.
Other than that, she’s back to school for half day mornings and loving her teacher and friends….
2nd Year Transplant Anniversary Cake
2 candles for 2 additional years of life we’ve been given
Memorial Candle lit to honor Sophie’s donor
Annual pic with headphones for 4th of July
Loving 3D movies!!
Will I be as tall as you?
1st ‘Real’ Concert – Goo Goo Dolls & Matchbox Twenty
Carousel – never get tired of them
Whoohooo! Camel Ride!
1st Baseball game! Go Cards!
Spiderman, Spiderman, Does whatever a spider can. Spins a web, any size…
Don’t worry I’m a doctor….
•March 16, 2013 • 4 Comments
So it’s been a while since the biopsy and it’s taken almost this long for the team to come to a conclusion. The conclusion IS – confusion. Basically, they’ve decided there was not enough data to tell what’s happening in her liver. The biopsy tissue was taken close to her stent tube. It’s clear her body is slightly angry with her stent tube at the moment, so that may have provided false information. The team has decided that we will continue as ‘normal’. I will take her early April for routine labs. They will closely monitor the liver numbers. If they are still elevated at the next scheduled stent change, they will redo the biopsy in a different location for a more accurate reading. So until then, we’ve all decided she’s not experiencing liver rejection (her labs this week showed her numbers beginning to trend back down). Thank you Jesus! :-)
Regardless of what the numbers say, we’re just happy that she looks and acts this healthy.
•February 28, 2013 • 2 Comments
Sophie did well during her procedure. The interventional radiologist replaced her bile stent tube with a fresh one and took a liver sample to send off for tests. We will know the biopsy results possibly Friday or early next week.
Sophie woke up from anesthesia “fit to be tied” but eventually calmed down once she was allowed to have milk. The little trooper had to lay still in bed for 6hrs. We were discharged late last night and slept in our own beds! (Yay! What a blessing.)
Today Lil’Sophie has been climbing and playing like nothing ever happened. We are so thankful for a smooth procedure. Now we just wait for results. :-)
•February 27, 2013 • 3 Comments
“Look at the snow, Baby Boo”
We’re taking Sophie for a surgery procedure today. It’s only been a month since the last surgery but her liver numbers are going up and the team has been attempting to investigate. She will have her normal bile stent change (early) to see if that might be the culprit. While she’s under they will take a liver biopsy to check for rejection. Outwardly she’s been showing NO signs of rejection but her lab draws have revealed a problem. Join us as we pray that the bile stent change will be the ‘fix’ needed at this time. Thank you!!
What’s going on in there…
•January 24, 2013 • 8 Comments
We can’t thank you enough for the out-pouring of prayers, encouragement, and well wishes that we’ve received. We truly felt it as this was Sophie’s best surgery to date. The cardiology surgeon was able to put a wire mesh stent in a narrow artery in Lil’Sophie’s lung and increase the flow drastically. He also gave us the best news which is that her replaced valve seems to be doing ok and he doesn’t see a need for her to have these repeat surgeries. So she may be in the clear for her heart/lungs for a while.
The bile duct surgeon did not have the same exciting news, however that part of the surgery went smoothly. She now has a fresh new drain tube in her bile duct. We’ll have some labs in the upcoming weeks to see if her liver numbers have returned to a more normal level. And we’ll also stay on the 3 month, bile-duct-tube-change, schedule for ‘years’ ahead – but this has finally become a minor surgery for her.
Sophie cried very little as she came out of sedation. They kept us overnight for observation and she spent the entire night singing convoluted songs to herself – something about: spiderman, potty time, mommy, daddy, mac & cheese, and baby. All music to my ears!!
•January 22, 2013 • 2 Comments