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.

Friday, November 18, 2011

The end of the line

There comes a point in the removal process when the decision needs to be made as to whether it is feasible to continue.  We are at that point.  Remember, Dr. Siddiqi is not comfortable grafting her toes and the very bottom of Addi's foot, he was recommending laser lightening so that we could monitor it for changes easier.

About two months ago, we saw Dr. Siddiqi, and he again said laser was the way to go, but he (read: Assistant Lindsay) wanted to check and see what laser would be best.  So we waited.  Lindsay was very good to update us on what she had found out, and these were our options:


  • Primary Children's has a CO2 laser, but Dr. Siddiqi didn't feel it would penetrate deep enough on Addi.
  • The University of Utah has other lasers, but the one that is best (a Qten laser that is usually used to remove tattoos) was broken, beyond repair, and was donated by the SLPD Gang Unit anyway, so the prospects of it being replaced are slim.
  • Rent the Qten laser from the laser rental company.  But the laser is in California, and the cost to transport it every 6 weeks would be astronomical, and probably not covered by the insurance company.
Lindsay suggested that we look into going to an actual aesthetic laser center to finish Addi off.  She suggested the only one in Utah, which is located not far (about 10 minutes) from our house.  Yep, they have the laser.  Nope, they don't take any kind of insurance, nor will they even bill insurance.  We would be responsible for the total cost at the time of service, and have to hope for reimbursement.  Not to mention the sedation out of a hospital, on our 4 year old - If they would even sedate.

So, after a great many discussions, we have decided to stop the removal process at this point.  If, when she is older, Addi decides that she would like to have her toes lightened, we will look happily have it done.  I would like to have some scar revision done, but we will wait at least a year to make sure they are all healed.  For now, we have reached the end of the line.

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