Saturday, January 30, 2016

One Year Follow Up

Some of you may remember how traumatic Rylee's life was during her first 3 months.  She was an extremely unhappy baby due to a hemangioma that became ulcerated on her bottom.  I first posted about it here, but it was the post "Is This an Urgent Matter?" that really detailed how hard that time really was.  We were so afraid that the pain she was going through during that time would affect her developmentally, or that she would grow up being just as miserable.

The ulcers on her bottom eventually healed, and we have been very diligent in applying butt paste and doing our best to prevent any other diaper rash from forming.  She took medications throughout her entire first 13 months of life to help shrink the hemangiomas.  In addition to the one on her bottom, she also has one on the back of her neck that is about the size of a large grape.

The one on her bottom has mostly disappeared, leaving behind a large scar that covers almost her entire right cheek, with only a little part of the hemangioma remaining on the inside of the cheek next to the anus.  The one on her back still sticks out quite a bit, but isn't near as bulbous as it once was.  It is however, very visible and we get asked about it frequently by both adults and children.  Rylee doesn't really even seem to know it's there at this point.

On Thursday, we made the trek up to OHSU for Rylee's one year follow up appointment with the pediatric dermatologist.  The doctor was very pleased with how the hemangiomas are looking.  He said the one on the back of her neck should continue shrinking, but will be very prune like in appearance and will most likely need to be removed, which typically happens just before starting school.  He advised us to continue using the butt paste, a zinc paste, and/or Vaseline on her bottom.  He also said we should be putting Vaseline on the other one, just to keep it nice and soft.  That's not something we've been doing, so we need to remember to start doing that.

Waiting for the doctor.
We don't have to go back for another 2 years!  At that time we will discuss and make a plan for having the one on her back removed, which will require a surgery with anesthesia, but it will only be a day procedure and not an overnight stay.  If the hemangioma is still on her bottom at that time, they will most likely do a laser removal of that as well while they are at it.

All done and ready to go home!
It was a long day in the car with it being almost 3 hours away, but Rylee was a trooper!  I'm so grateful to my sister for watching Ayden for me, because I know he wouldn't have been near as patient with the drive.  I also know it would have been impossible to focus on Rylee during the appointment because he would have been into everything in the doctor's office!  He had a great day playing with his cousins and my sister's other day care kids instead.

We are so incredibly happy to get such great news and that we don't need to make that trip again for another 2 years.  Mostly, we are beyond grateful that Rylee is healthy and happy!

I went back and read those previous posts I mentioned above.  It's amazing to really see how far we have come since then.  I'm including the pictures from that time, to share with you, because it's not something you can really fully grasp the severity of without seeing for yourself.  They are kind of graphic, so if you get grossed out easily, you may not want to look.  I will scroll down before posting the pics, so you can just sign off here if you need to.










































This is the original ulcer that developed within 2 weeks of being born.

These smaller ulcers formed just shy of Rylee's 2 month birthday.  They actually grew much bigger, so that this spot was just one giant ulcer eating away at her poor little tushy.

I'd post new pictures of what her bottom looks like now, but it doesn't feel right at this point to take pictures of her 2 year old butt and share them on the internet.  lol, maybe I'm just weird.  Just know that it looks nothing like this anymore!  It mostly looks like one giant scar, still the same size, and no longer raised from the skin except for the very inside part in the crack.

4 comments:

  1. Love, love, love how happy Rylee is now. I remember, it was heartwrenching reading the suffering, and the pictures, so painful! So happy for the good news and Rylees smile!

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  2. I remember reading all of those posts at the time, poor little one :( I am so glad she is better now though, what a sweetheart!

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  3. I forgot how bad those pictures were. Poor Rylee. I'm so glad that she is doing better. Luckily, she won't remember any of it (even if you will).

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  4. Still makes my heart ache seeing these pictures even knowing and seeing first hand how well they have healed and how happy she is at this stage of her life. Like it never even happened! At least not for her! She is such a cutie and so happy! Thankful that she has/is healing! Love and hugs, Auntie

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