Sam has been doing so well for three days...until I blew it today! I've been making great strides in screwing things up lately! I'm so awesome I can hardly contain myself!
Here's how it all went down. Shelbie needed all her scripts refilled and her thyroid medication had run out of refills. That means one thing..a big pain the neck. I never find out she is out until she is out. The pharmacy never puts calling the doctor at the top of their priority list and for me to call the doctor includes a grand game of phone tag, SO...I decided after school to run Shelbie down to the clinic for a blood test and get the refill script myself. They never refill it unless we do the token blood work to check her thyroid levels. Fair enough.
Monday, Sam showed me this strange mole that showed up just a week ago from out of the blue. It was waxy looking and was starting to fill up with blood. Since Dyskeratosis Congenita carries a 95% chance of getting cancer, including skin cancer, I wanted to be proactive. Since we were going to the clinic anyways, I made Sam come to get the mole checked out.
Long story short...I'm glad we did. The doctor thought it was suspect and so he had to have it removed! He has another one that is suspect and will need removed but Sam was only up for one being taken off. The other one will be a little more involved because of where it is on his back so we will go back for that.
Ahhh....oh what fun! I tried to explain to him that prevention is the key to him living a happy life. I'm not trying to make his life miserable. I do understand that having to go through procedures, even minor ones, just stirs up all the anxiety of living with a chronic and fatal disease.
I'm not too sure how to help him cope better. I can't just let things go so he isn't reminded of his reality but it sure is rough to go through this so often.
Can't wait for next week...both kids in the hospital AGAIN!
Shelbie on Tuesday for her transfusion and Sam on Thursday for all his pulmonary testing...an all day event at the hospital.
29 gifts! My traditional way to start the new year...give away 29 acts of service in 29 days is back in my life and week one is done! Eve...
Taking care of loved ones with chronic and rare conditions is harder than I ever imagined it could be and each appointment we go to, seems t...
Well, shocker... Shelbie is going for hand surgery on April 6th. One more thing to add to our list of appointments crashing in over the n...
I actually got results back a few days ago but I've been letting things percolate in my head a little. So, the official word is Hepat...