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.

 

December 2012 – Make A Wish – What day is this??

•December 13, 2012 • 1 Comment

Give Kids the World is an amazing place. Each day a surprise gift awaits your child upon returning to your villa. Sophie’s received 2 board games, a puzzle, a gift bag FULL of small toys, and several plush animals that she sleeps with each night. I’m not sure if we’ll get her new treasures on the plane.

The village also presents every child with a shiny gold star. They write their name, and place it in a ‘magical’ box. The star fairy collects the stars each night and puts them on the ceiling of the ‘Castle of Dreams’. The next day (or any day in the future) you can return to be directed to your stars’ location. They never remove the stars and many Alumni come back to see their star years later.

GKTW also lets each child make their own special pillow to take home. We opted to receive a preassembled pillow, as chances are, we would still be there waiting for Sophie to finish. She usually is distracted by the twinkle-lighted slide and has more fun as the staff cheers for her while she plays.

After a morning of stars and pillows we made our way to Universal, where we were treated like stars ourselves. Part of our Make A Wish package included VIP access to ALL the parks. Universal takes this very seriously!  With a flash of the badge they kept calling for escorts to whisk us away down back hallways, through employee doors, shuffling us to the front of the line of every ride. We even had the choice of selecting our seating on rides. Universal has ‘parent swap’ areas allowing us to take turns on the thrill rides while waiting with Sophie. We may need a chiropractor visit when we return.

Sophie had a great time too. At the “Despicable Me” show, the Minion characters were available for a quick photo op. Unfortunately, we had missed our window of opportunity. As we were walking away one of the staff saw Bryce was wearing a VIP badge. She called us back and told us to wait. At the time we weren’t sure what was happening. Once they finished removing the people they brought the Minion characters back out for Sophie’s own private photo time with them. They were amazing to us!

I think Sophie’s favorite was Whoville, where she met some Whos, had a pic with the Grinch, rode the Who train, and Dr Suess ride (multiple times).  We ended the evening with a nice dinner on the Universal City Walk where a random stranger gave Sophie his balloon hat – another unbelievable day!!!

December 2012 – Make A Wish Day 4

•December 12, 2012 • Leave a Comment

Today we finished out Magic Kingdom by shooting some aliens with Buzz Lightyear, driving a race car, rode a magic carpet, a jungle safari, a haunted house, and saw Pirates of the Caribbean.  And as if that wasn’t enough fun, we drove to Disney Hollywood Studios. We heard Sophie scream at the top of her lungs as she saw parade characters from the movies “Up” and “Monsters Inc”. She played in the “Honey I Shrunk the Kids” playground, watched a rockin’ Christmas concert with friends she only met for 30 seconds, and danced in the streets to flashing Christmas lights choreographed to Trans-Siberian Orchestra.

December 2012 – Make A Wish Day 3

•December 11, 2012 • 2 Comments

Today Give Kids the World gave Sophie the opportunity to have a little one on one time with Mickey. After a few pics, hugs, and high fives we were off to Magic Kingdom. Lil’Sophie got to ride flying elephants, take a flight with Peter Pan, and experience her very first roller coaster. We saw the castle with a light show and fireworks.  Our evening was rained out but we made the best of it as Sophie has never been able to play in the rain – now was her chance.

We have rain for the next 2 days so we’ll see what happens next…

December 2012 – Make A Wish Day 2

•December 10, 2012 • 1 Comment

We had a quick change in plans and decided to split the day between Animal Kingdom and Epcot. We started our 14hr day with a Wild Safari in Animal Kingdom. Among all the interesting animals there were a few giraffes that were so close we could touch them. Many animals, rides, and food stops later, we moved on to Epcot where Sophie went wild over her favorite –  NEMO!!!  We went on the ride several times, sat with turtle talk with ‘Crush’, and walked through all the aquarium exhibits. Lil’Sophie had a short nap in the stroller while mommy & daddy explored the sites in each ‘country’. We finished with the epic laser light and firework show over the water. What a fantastic day!!!

December 2012 – Make A Wish Day 1

•December 8, 2012 • 1 Comment

Lil’Sophie has been treated with complete celebrity status the entire day. From a Limo ride, a cockpit photo op, personal greeters, and gifts galore…. Here are some highlight photos.

Tomorrow Animal Kingdom awaits.

December 2012 – I’m READY!!

•December 6, 2012 • 3 Comments
My new friend, Kaitlin!

My new friend, Kaitlin!

We had a couple of visitors this week. Kaitlin – our new friend from Valued Pharmacy Services and Megan from Make A Wish stopped by on Tuesday evening to shower Lil’Sophie in princess gifts. We couldn’t believe all that they blessed her with – water bottles, slippers, hat, scarf, plush Nemo & Dory, pajamas, shirt, and sweatshirt . What a fantastic surprise! They also gave Sophie a princess suitcase which she’s been rolling around the house each day.

present pile

Opening Gifts Hugs from VPS S and the suitcase

As Sophie has told us several times, she’s ‘ready’.  I’m not even sure she knows what she’s ready for, but she can tell it’s something exciting.  Thank you so much Valued Pharmacy Services & Make A Wish!  This is going to be an amazing time.

Big Smiles Can't wait!