Wednesday, April 20, 2011

2 Steps Forward ~ 1 Step Back

Sunday afternoon, we perfomed Sophie's 8th expansion, giving her a total of 720cc's in each expander.  She did great with the expansion, with the help of our friends Kai Lan and big suckers.  Now the we are nearing the end of the expansion process (Wow!  It seems so strange saying that.), Sophie's expanders are not getting as soft between expansions, so I was not sure if I would be able to get 120cc's this time.  I knew it would be great if we could, but I also knew that I had to be very careful to not overfill and cut off the blood supply to the cappilaries in the skin.  The expanders were really tight, but we had no problems.  Or so I thought. 

After the fill, I got dinner ready, and we all sat down to eat.  Sophie ate a few bites and then got this look on her face like something was wrong and told me she was done eating.  She did not get a really good nap and had been eating a sucker, so we thought she was tired and not hungry.  She got down a played a little, but then came to me and asked to get in my lap.  She did this off and on for a while, which is not like her at all.  I gave her some Advil to see if that would help, and then she started getting whiny.  We still thought that maybe she was just tired, so I gave her a bath and got her ready for bed, thinking that she would go on to sleep.  It got worse. 

She started getting really fussy and couldn't be still.  We went to bed and let her get in the bed with us, hoping that she would doze off and everything would be okay the next morning.  She woke up every 30 minutes or so crying.  I gave her a does of Tylenol with codeine thinking that would help.  It didn't, and the crying got worse.  This rocked on until midnight, when we decided that we needed to take some of the saline out of Sophie's expanders.  I applied the emla cream and set the alarm on my phone to wake us in an hour, not that we were asleep.  Finally, 1:15am rolled around and we were able to remove 60cc's of saline from each expander.  That did the trick, and she was out like a light. 

I knew that we could remove some saline if need be, but never expected to have to do it.  Boy was I glad that we did!  (And I'm positive she was too!)

Sophie with 660cc's of saline in her expanders

Sophie's surgery is scheduled for May 13th.  Only 3 more fills to go!

Sunday, April 10, 2011

Just A Spoonful of Sugar

makes the medicine go down,
The medicine go doowwn,
Medicine go down.

I'm sure some of you out there remember that song. Well, there's definitely truth in the words to this song.
The past couple of expansions we have done have been less than relaxed, to say the least. Sophie was not in pain, but very anxious as we applied the lidocaine and then as we removed it to prepare for the expansion. We tried lots of things to distract her, but let's face it, a two-year-old is a lot smarter than a lot of us give them credit for. You have to be really, really creative to keep them distracted week after week.

I've been talking to different people trying to come up with new ways to distract her and new ways to do her expansion so that she is more comfortable.  I decided that we would try her lying on her tummy, and it turns out that this was a wise decision.  With the help of a BIG sucker that she received at Wyatt and Bailey's birthday/Easter party yesterday and a surprise gift of a new Kai Lan dvd, tonight's expansion was a breeze!  I am so relieved.  It is tough to have to put your child through this, but especially when they are NOT happy about it at all. 

We are now up to 600 ccs in each expander and surgery is about 4 weeks away.  Sophie's expanders are getting SO BIG, but that is a wonderful thing!  The bigger they get, the more nevus can be removed!  I sent another update to Dr Bauer this week, and he is still pleased with the progress.  We are beginning to see pictures of other little ones who have been through expansion and are now having their surgeries, and I have to say that we are VERY excited about the prospective outcome for Sophie!  All of this will be so worth it!

I will post some more pictures in a few days.  I decided I wouldn't push my luck with the camera tonight.

Thanks to everyone for your prayers.  We appreciate them so very much!