Monday, February 13, 2012

The Diagnosis

Well I am writing this to kind of clear my head of a bunch of crap that has been swimming around. Life as an internet blogger is not all Keg Parties and free beef jerky. No, there are times when we must put down life's proverbial bong and actually take a hit of reality (that last sentence needs to be on a t-shirt somewhere). My reality has been slowing hitting for the last 2 weeks. I haven't been much in the blogging mood, and until this post comes out, my partner (in blogging ONLY) on this site doesn't even know whats up.

My attempt here is to not go on a diatribe about how you should feel sorry for us or whatever. It's not going to be a scientific masterpiece in which doctors will study my writings for years to come. No this is going to be pretty much a brain dump of thoughts and questions I have about what's going on.

So you have some reference, here's a brief background. My middle daughter Lucy (almost 4 yo) is hell on wheels. She pretty much has the energy of a small locomotive and it takes her about 45 minutes to fall asleep in bed every night. However, she's also the sweetest thing on Earth. Back when she was 3 weeks old she developed a large birthmark that spanned from her belly all the way around her side and ended up stopping in the middle of her back. We were kind of taken back by it, but my wife and I both have large, oddly placed birthmarks (my wife's leg, my face). So we didn't worry too much. We visited our doctor for a check up and it raised a small red flag with him and sent us off to get some tests run with her. The wife and I were a bit confused but whatever. First we had to get a skin graft of it to see what kind of birthmark it was. It is what is called a Cafe Ole Macule. Essentially, a pretty standard birthmark. However the location of it was a bit worrisome to the doctor. We then were lined up for some testing around her 6 month birthday at a local childrens hospital to test for 2 things in particular: Neurofibromatosis & McCune-Albright Syndrome. She came back with a clean bill of health but it was something that we have been getting tested for on a yearly basis ever since. Much like my PSA tests, I have to get them since my Prostate scare, but its just something that needs to be monitored.

Fast forward to November 2011 and our suspicions started to grow.... Things were occurring that shouldn't be in a 3yo. We noticed that my daughter was changing a bit and when compared to my 5 year old's they just didn't look the same. Since the 2 of them are so different we just didn't think too much of it. After the New Year, we knew we should see a doctor about it because it was obvious the changes weren't due to her just being different than the 5yo. We made an appointment with the Children's Hospital we've been going to since she was 3 weeks old. They glad were able to fit us in the March 2012 time frame. Two days after we made the appointment, however, other symptoms started showing that needed to be addressed more immediately. We were bumped up to see the Doctor the next day (on her day off) to goo over some things.

We went to the hospital the next day and went through some tests, x-rays, MRI's, etc. Kind of a hectic day to see your kid getting poked and prodded for so long. Well within a few days after our visit, our suspicions were confirmed that our daughter has McCune Albright Syndrome and some cysts on her ovaries. She's 3. Anyway, I am not going to go through the symptoms or complications of it here because you can do that yourself and I don't want to think about it more than possible.

What I am looking for in this post is if any of the 10 readers out there have any experience with this diagnosis and honestly I am looking for some sanity. Thanks for reading.


  1. Got no experience with this, but thinking of you and yours, good buddy.

  2. Shep, Dude, sorry to hear. I have no experience to offer or even heard of the damn disease.
    However, I had not heard of Hydrocephalus either when my youngest boy was diagnoses with it at age 4 months and in surgery days later. I can now probably give a lecture on it! :)
    All I can offer is it will work out and It's never as bad as a parent will envision.
    Stay positive and do not worry about anything other than sticking to the plan and the next appt. Trying to figure out what this means a year from now, 5 years, useless.
    Keep your humor and keep on keeping on...:) -Marlow