September 2013 – What’s New?

•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….

March 2013 – Biopsy Results…Well kinda

•March 16, 2013 • 4 Comments

Sophie smile

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.

Reading Sophie Green

February 2013 – Home from Biopsy

•February 28, 2013 • 2 Comments

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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. :-)

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Quick Note – Surgery Today

•February 27, 2013 • 3 Comments
"Look at the snow, Baby Boo"

“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...

What’s going on in there…

January 2013 – Surgery

•January 24, 2013 • 8 Comments

WS with nurse Close up with nurse

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 2013 – Happy Birthday!!

•January 22, 2013 • 2 Comments

We had a great Christmas and New Year filled with lots of fun with family. On January 20th Lil’Sophie turned 3 years old!!  It’s hard to believe!

Turning a year older is bringing lots of changes for her. She no longer qualifies for her in-home therapy visits that she was getting 4 times a week. So we had to say good-bye to some fantastic people who have been a part of our lives over the last 2 years.  Sophie will now be going to an early special education pre-school 2 half days a week. She will start attending in a couple of weeks and is ecstatic.

It’s also time for our 3 month ‘routine’ surgeries. Tomorrow Sophie will go for a cardiac cath where they will dilate some arteries in her small lung.  She will also have the tube in her bile duct changed out for a fresh new one. We are hoping she bounces back quickly so she can start her new school routine.

Over-all Sophie is doing fantastic. Many of the nurses have been brought to tears as they see her current progress. What a change in Sophie as they remember taking care of her in her fragile state.  She’s such a little miracle!!!

December 2012 – Make A Wish Final Day

•December 13, 2012 • Leave a Comment

Our last day includes a visit to the castle of dreams to find where the star fairy placed Sophie’s star during the night. It was located in a circle of ‘Love’ on the ceiling, and is quite amazing to think it will always be there. We ran into Mickey and Goofy who politely gave attention to Sophie. Then we were off to Sea World. Sophie rode several rides, watched a dolphin show, and fell asleep during the Shamu show. She was given an opportunity to feed dolphins which she enjoyed and touched some sting rays.

Back at our Give Kids the World Village they were celebrating Christmas with an amazing dinner, decorating gingerbread cookies, a parade, carriage rides, and a visit with Santa. Sophie played with several of the children under the forced snow fall and left the event with another gift. We’re working on packing all these things into our suitcases for the trip home in the morning.

Upon checkout they will provide us a photo CD with all the pics they took of us during our stay (including the Santa pic) – So I guess there will be more miscellaneous moments to come.

 

 
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