Back to Bloggin with a NEW Diagnosis!

After deciding to take a total break from blogging, not knowing whether or not I was going to start back up again, here I am!  So much has happened this pas year and a half that I don't even know where to start.

Caitlyn had a debulking surgery done of her mons and labial areas, (her, "little lady parts" for those of you who don't quite know medical terminology), in January 2013.  After her recovery I decided that we were done with doctor visits, surgeries, and hospitals for a while.  I just wanted her to live "normally" for a while.

We did go to Gillette Children's for a second opinion about her hip - I am just not fond of the doctor she had in Milwaukee.  He is an amazing surgeon, but his bed-side manner could use some work.  I got her into the head of the department for pediatric orthopedics, who specializes in lower extremities.  We did a sedated arthrogram of her right hip and it showed definite necrosis of her femoral head and hip joint - meaning "bone death." She is not getting adequate blood flow to that area and as a result part of her bone/joint is dying.  She will definitely need surgery to correct this problem but with all that she has been through I decided to wait.  If her hip stays stable then hopefully we can do surgery in a few years; if not, then I may have to agree to surgical intervention sooner.  Only time will tell.

On March 24th, 2013 Caitlyn welcomed and beautiful new baby brother - David Allen-Lee!!!  She is
such a proud big sister and absolutely LOVES her brother...sometimes a little too much!

Our summer was fantastic!  We were finally able to give her a real summer without drainage tubes, PICC lines, or casts!  We didn't have a single trip to Milwaukee planned for her either.  We had one hiccup in July with Caitlyn's health.  Towards mid-July, Caity went to bed telling me that her leg her.  I chalked it up to her running to much that day outside and she just needed to rest it for a while.  The

next morning she said her leg hurt again.  I asked her to come out for breakfast and she refused to walk.  I thought at first she was just being stubborn and trying to sucker Grandma Louise into carrying her.  I took a look at her leg and noticed it was warm, red, and hurt to the touch.  She was also running a fever so I called Milwaukee and was advised to call 911.  Once to the hospital and after ruling out a blood clot the doctors determined she had cellulitis, (an infection that people with Caitlyn's condition are susceptible to getting).  She spent a few days in the hospital on IV antibiotics.  She was sent home on oral medication and the rest of our summer was uneventful - medically speaking.

In August we took her to Mt. Olympus in Wisconsin Dells. It was an AMAZING day and she had a blast!  I don't know if I have ever seen her smile and laugh so much.  Caitlyn was also nominated to be the Children's Miracle Network Hero for our area, which we gladly accepted!  More to come on that later!  School started back up at the end of August.  I was finally accepted into the core course classes of the nursing program - woot woot!!! 

By September I decided to contact Marcia in Milwaukee at the Vascular Anomalies Clinic.  I told her that over the summer I had noticed that the left side of her abdomen (which has involvement of malformations), has been getting bigger and bigger.  She was now wearing size 6-7 shirts and she was only 3 years old.  Caity also had numerous new blebs popping up her back and a couple on her belly.  We had also been having problems with Caitlyn controlling her bladder during the night and day.  Without any notice she would jump up and run to the bathroom; sometimes she would make it and other times she wouldn't, and sometimes she would start to pee herself and not even know she had done it.  We scheduled an appointment to meet with a Urologist, the VAC team, and get an MRI done in November.  

The meeting with the Urologist went well.  We could definintly see on MRI and ultrasound that her bladder is severely displaced due to the amount of malformations within her abdominal cavity pushing it over.  This is likely the reason she is having a hard time controlling and knowing when her bladder is full enough to urinate.  He started her on a medication and a diet plan to follow.

That same evening, as we were leaving, we met up with Dr. Drolet (Caitlyn's Dermatologist) on the skywalk.  She informed me then that we got her genetic testing results back, which we had started the year before, and she positively, without a doubt, has CLOVES Syndrome, not Klippel Trenaunay.  This was HUGE news and I was so excited to finally have an official diagnosis.  The VAC meeting the next day was kind of disappointing.  We

My CLOVES Baby!

discussed that the only way to reduce the size of Caity's abdomen was to do a debulking, and probably more than one would be needed.  Her mons and labia will also unfortunately need more work done.  Then the discussion with Caitlyn's oncologist was whether or not to start her back on the chemo that she was on as a baby.

After take a few weeks to think about it I finally decided to move forward and start her back on the Sirolimus.  Her belly has just grown so much that I felt like I couldn't just sit here and watch it get bigger, we needed to do something.  So far she has handled it pretty well; no major side effects as of yet.  Tired, crabby, no appetite - the usual for when someone is on chemo or taking an immunosuppressant. 

More recently Caitlyn was approved for a wish through the Make-A-Wish foundation!  Her wish granters visited a few days ago and Caitlyn wished to be a princess at Cinderella's Castle!  Hopefully we can plan our week long Walt Disney World wish trip around school and Caitlyn's upcoming surgeries this summer.  I will be sure to update and post pictures of my princess enjoying her wish!!!

That is it for now on Caitlyn.  As things happen and change for her I will keep updating.  I promise not to take another hiatus.  I finally came to realize that writing her story down is healing for me and hopefully brings hope, understanding, and awareness to others reading this.  Please feel free to share her story or contact me if you would like.  I am more than willing to answer questions and educate appropriately.

Thank you so much I will write more soon!!!
Sondra and Caity-Bug