Addison was born with a Giant Congenital Nevus on her left leg. The journey is a struggle. Decisions are hard. We hope that Addison's experience can help others dealing with the same issue. While we know that there are others that are more extreme, we hope that in sharing her story, we can provide support and encouragement. Leave a comment, let us know you've been here.

Tuesday, May 10, 2011

Wanna See?

We are at the "change the bandage everyday, and use these really expensive oil emulsion bandages, and gauze-that-the-insurance-doesn't-cover-because-they-are available-over-the-counter stage" of recovery with Addison.  She has decided this time that she will help, so she does the unwrapping - and does a pretty dang good job of it.

Addi still isn't allowed to walk, but she has figured out how to scoot all over, and crawls around pretty fast.   After some discussion with her pre-school teacher, Addi went back to school last week.  She was a little apprehensive to go.  She was afraid that the other kids would make fun of her.  I assured her that Mrs. Cossa wouldn't let them tease her, so she went, and had a great time.
The pictures on her were taken on Thursday, just one week and one day after surgery.  Since then, the heel portion has started to look worse, so we are having it checked out later today.  Other than that, it really does look good!

And, if you don't want to see the pictures, stop here.  If you would like to see them, scroll down.



























Sunday, May 1, 2011

The last graft

Addi's expander in her back was so big, and her skin so pliable, that it only took three times to get that thing completely full.  The doc decided to act quickly and get her graft done.  So, we moved it up.  

Because we were squeezed in at the last minute, Addi was the last case for Dr. Siddiqi for the day.  She wasn't scheduled for surgery until 4:25.  She had to go all day without eating.  This also meant that Mary Ann was leaving for the day as we got there.  Good thing for us, she has a friend named Morgan, who was more than willing to sit and play with Addi, and Addi let her go back to the OR to play as well.  No tears at all!

Of course, we had to have the sticker earrings to replace the ones that I took out that morning - which totally ticked her off, buy the way.


Addi waiting for Dr. Siddiqi.  She pretty much had the waiting room to herself.


One last look at her foot.  Most of this is gone, we think, haven't actually seen it.  



Somehow, the stars all aligned, because Dr. Siddiqi was running ahead of schedule.  I don't think that has ever happened before - EVER.  I'm not complaining at all, just pleasantly surprised as Addi walked back to the OR about 35 minutes before she was scheduled to .  

And then Addi messed up the doctor's on time streak for the day (we knew it would happen - 2 hours for her graft isn't enough).  She took just under 3 hours to have the graft done and have her back sewn back up.  She has been telling us since she woke up that her foot itches.  I'm not sure if that is because of the splint she has holding her foot immobile, or her bandage, or just the healing process.  The nurse says that is pretty normal, so we haven't really worried about it, just rubbed the bandage when she complains.  

And even after all that cutting and sewing, Dr. Siddiqi felt that it would be good to send Addi home, rather than keep her overnight in the hospital.  YES!  Addi slept in her own bed, all night long, and was fine.  

Addi isn't allowed to walk until after we see the doctor on Wednesday - he wants to sedate her to change the bandage, take out her drain, and remove her staples.  He is one smart man!

And sitting on the couch one day, Addi took a peek into her bandage, which is open at her toes.  They are still brown, and probably a little more brown than normal due to blood.  She was a bit upset and asked "Hey!  Why are my toes still brown?  Oh that's right, Dr. Siddiqi wants to laser them."  She definitely knows what is going on.