Progress

We have done 2 more fills at home now, and Sophie is up to 360cc's in each expander.  We are still trying to learn the tricks of making sure the Emla cream stays in place over the ports (tape works the best) and making sure Sophie stays distracted, especially when I access the port.  She is very anxious during this time, but I pray that this will get better as we continue to do the fills.  On a positive note, I was able to get 80 cc's on our last injection, and am hopeful that I can get 100 on our fill this week.

Below are pictures of Sophie from the last two fills, the first with 280 cc's and the last with 360 cc's.  You can see a marked difference between the two.  She is still tolerating them well and does not complain about them.  I hear she shows them to everyone at school, and she tells me that she LOVES her "spanders".  We are trying to make this process as normal as possible for her, so it is music to my ears that loves her "spanders"!

I sent the first four pictures below to Dr. Bauer and his staff for an update. They say everything looks great and for us to keep on keeping on!

280 cc's

360 cc's

One Year Ago

this very special little girl walked into our lives and changed us forever.

Sophie, you have no idea how much we love you.  You mean more to us than we ever thought possible, and we are so thankful that God allowed us to be your parents.  We look forward to many years of making memories and watching you grow into the person that God plans for you to be. 

Happy 1st Gotcha Day!

With All of Our Love,

Mama and Baba

Our Little Cowgirl

Happy St. Patrick's Day!

Second Expander Fill

We survived Sophie's second expander fill (which was the first one we have done at home) on Saturday.  Thank goodness for Emla cream, which is used to numb the skin over the ports on the expanders.  We injected 60 cc's into each expander with 3 suckers and no tears!  Yea!

I did find out one thing the hard way, Emla cream wears off after two hours for Sophie.  We were told by Sophie's doctors and nurses to apply the Emla an hour before the fill.  Well, I saw on the Nevus Outreach Yahoo group where others said to wait two hours.  My thought was, if one hour works then two should be better.  Logical, right?  Wrong! 

After finishing the fill of the first expander, I moved around to the other side to begin the second expander fill.  I started to insert the needle and she MOVED!  No cries.  Just movement.  I froze.  I waited a minute.  Still no tears, so I thought, "Maybe it was just the pressure she was moving away from".  I tried again.  Same thing, and a whine too.  Oh, I could have died right there on the spot.  I was so nervous already that I wouldn't do it right or that I would hurt her, and I tried to stay calm throughout the whole process because I knew she would pick up on the fact that I was upset.  I also knew that if this was a bad experience that it would set the tone for the other 10-11 fills that we have ahead of us.  No pressure, right?

After the second time she felt the needle stick, I told Bo that we would just stop, apply more Emla cream, wait an hour and try again.  We did.  The Emla worked, and we had a successful second try.  Whew!  I was so relieved!  I am so glad to have that behind us now!

Thank you to everyone who has been praying for us.  Keep it up because we have 10-11 more fills to go!

Sophie with 220 cc's in each expander

Documenting the Process

When I first blogged about Sophie's nevus removal process here, I explained how I wanted to document this for Sophie since she would not remember much of it.  Now that the expanders are in, and we have started filling them, I wanted to post a before and two after pictures, just to get us started.

Sophie before

Sophie after first expanders are put in and filled with 160cc's each,

120 during surgery and 40 during the first fill

Back view with 160cc's in each expanders

Stay tuned for a post and pictures after the first fill at home.

Finally Some Fun in Chicago!

We made another trip (yes, another!) trip to Chicago last week.  Sophie went for a check-up and for us to learn how to fill her expanders.  Dr. Bauer likes for the first fill to be done by his staff to ensure that everything is working properly, and he also uses this as a teaching opportunity for us to learn, observe, and participate in the expansion process since we will be doing this from home until May, when Sophie has her first nevus excision surgery.  It was quite unnerving to stick a needle into my child, but with the help of Emla cream, she hardly noticed it at all.  Thank goodness!!!

While in Chicago this time, we were able to have a little fun.  We visited Kohl Children's Museum and had a blast!  It was very busy there.  Several schools from the area must have been on a field trip there that day. 

They had an art room where the craft of the day was painting a self-portrait.  Sophie was a little too young to do the craft, so we opted to play with the shapes on the light table.  Each of the pieces has magnets on the side, so she had a lot of fun creating different things out of the shapes.

Then there was a room that was all about water.  Here Sophie is watching jelly fish being pushed up to the top of the tank by air bubbles.

And here she was making a ball go up in a tube using pressurized water.

We moved on to the music room.  She LOVES music, so this was her favorite.  She plucked the strings on a guitar to hear the sound,

and then played the cymbals, the bongo, and shook the tamberene.

I think she would have stayed

in this room forever.

This contraption reminded me of the game Mouse Trap.  I know I'm dating myself, but I'm sure there are some of you out there that remember this game!

Finally, we made it to the library where Sophie played on the "puter", as she likes to call it, and we read some books. 

There were many other rooms (grocery store, veterinary clinic, daycare, etc.) there that we didn't get to visit because it was so crowded and it was almost lunch time.  We will definitely be coming back here, so we visit them next time!

First Round of Expanders Are In

Sorry it has taken me so long to post an update on Sophie. I really thought I would have time to post while we were in Chicago the first time, but I was so wrong!  Things were a bit more hectic than I anticipated, but that's okay.  All was good in the end, and that is what is most important. 

We made it to Chicago without any issues this time.  The weather was beautiful, and our flight was right on time.  There is something to be said about flying from Pensacola on a Saturday.  There was hardly anyone in security, which made this trip a breeze! 

Monday rolled around all too quickly.  Thankfully Sophie was Dr. Bauer's third case that day, so we didn't have to be at the hospital until 7:45.  We got Sophie changed into her cute little hospital gown and answered all of the questions you have to answer prior to having surgery. 

While waiting on the "happy juice" to be delivered, Sophie and I colored, which is one of her favorite things to do these days.  She knows her colors, for the most part, and we take advantage of all of the opportunities to ask what color everything is. 

Sophie's surgery began at 9:15 and lasted around 1 1/2 hours.  Everything went as expected, and she did great.  She came out of surgery with 3 incisions, 2-750 cc expanders, 2 drains, and a pair of "no-no's".  She did so well in recovery that we were moved to a room within an hour.   

For those of you who are wondering what "no-no's" are, they are the things on Sophie's arms in the photo below that prevent her from bending her arms at the elbows and pulling at drains or anything else she shouldn't be pulling on.  She was okay with them for a while, especially when Baba was blowing bubbles for her.

But she is very independent, and nothing would do but for her to blow the bubbles herself, with the "no-no's" on.  That was a difficult task, but she managed to blow a few bubbles anyway! 

After a few hours of being in a room, we were moved across the hall to a bigger one that had a regular hospital bed, a captain's bed, a recliner, and a rocking chair.  You can see here that Sophie was very comfy and relaxed in her big bed.  The room was a much more comfortable room and easier to maneuver around in.  We really felt like we were in a hotel.  The hospital room had a big screen tv and Netflix on-demand.  It also had room service, and the food was delicious.  I know you are all thinking that we were just starving to death, and anything would have tasted good to us.  I promise that was not the case.  We ate the food 3 different times, and it was very good every time. 

On Tuesday afternoon, we were discharged from the hospital.  Sophie slept really well that night, but was quite sore the next day.  Who wouldn't be, right?  We alternated Advil and Tylenol to keep her as comfortable as possible.  She was such a little trooper.  We were really dreading the flight home on Wednesday, but she did great.  She flew home in my lap and then rode in her carseat from Pensacola home.  We were very surprised, but all of the nurses had told us that each day would get better and it has. 

We are so thankful!