Happy Fifth Birthday! How do I begin to describe this year for you? It has been phenomenal. You continue to wow us with your full personality, love of life and fierceness! You keep telling everyone that now you are five then you say, "and I love it!" I wonder what you love about being five. Is there a part of you that knows there are things you are doing right now we once thought you might never do?
Dr. R says your disease is progressing. Your lesions have moved to the inside of your body and we have had to continue to increase your medication. How have you handled this? Well, like you have handled everything else life has handed you.... by throwing it punches. You are scheduled to go into the hospital in a week for surgery to have your tonsils and adenoids removed, tubes inserted into your ears and be scoped in an attempt to see just how far your disease has progressed and to try to stop these new lesions from progressing further. We will see how your body reacts to all of this.
So what have you done? You have started dance class, dance class! You became a ballerina this year. You do not always make it to class (on your bad days it is hard) but Miss Sue says you do very well when you are there. The first time I watched you in class I bawled my eyes out. All I could see was that nine month old baby covered in bandages. All I could feel was the fear that we would lose you or that you would never walk. And there you were dancing.
With this small success, the NIH said we could try short bouts of school and see how you do. So we are doing 3 hours a week of preschool. You love it. This is another milestone I was not always sure we would meet. You have not been feeling well since we started, we already had to do a course of steroids but I am hoping that will resolve itself after the surgery.
You still love your shovey blankets and rub on the satin part to go to sleep (and yes you still drink a bottle!), this year you have dad and I take turns laying with you at night. You are still throwing up a lot at night. Plus, to be honest, we love it. You are so sweet and you tell us all about your day with Julie.
Julie... how do I even describe your relationship with Julie. Julie is your nanny but she is also your best friend and just an integral part of our family. You absolutely lit up when she got to your birthday party this year. It was adorable. She makes you so happy and takes such good care of you... of all of us.
This year you have loved going to the zoo. You love the big cats and the reptile house.
You chose a Jurassic World themed birthday party this year. You insisted! You have never seen the movie but something about those huge, ferocious dinosaurs intrigued you. That is how you deal with life; big, bold and sometimes loud! So we had a Jurassic World birthday party.
I read the Pyoderma Gangrenosum facebook page. It has stories of adults with a disease similar to yours and their treatment. They talk about how awful their lives are, how horrible the side effects of the medications are, how bad the pain is... Then I think about you and think about how everyone says you act just like a regular kid. You are so amazing. I know that when you complain of pain it must be really bad. You say you have headaches and your legs hurt. Then you go play like every other five year old I know. I just don't know how you do but I am so proud of you. You truly are an inspiration. Happy Birthday sweet girl. I love you.
