2008 Stanley Letter

stanley2008It’s been another heartfelt year surrounded by love, family & friendship. I’ll be 5 in August and have been living life fully! Even though I have CF, I’m happy, strong and growing- thanks to you! I’ve made some really great friends here in NYC and have been thoroughly enjoying watching my sister Skylar-Rose grow up. She just means the world to me…

I am so thankful for my entire family & friends. Everyone gives me so much wonderful support all year long, especially during the Great Strides walk. Over the past few years, my family & friends have had so much fun at the walk. You should definitely try to join us this year. You can check out the details here or click on my WALK WITH ME cloud up top. And remember, because of your support, the challenges in my life are easier to manage. I’m happy about who I am, and am thankful for all the great stuff I have to manage my disease!

As you know, CF makes my body produce this abnormally thick mucus, which sticks to my lungs and clogs my pancreas. I can’t digest my food properly, but thankfully I have this great sauce that I take with everything I eat (digestive enzymes). My sauce makes my belly feel good. I also have a really cool vibrating vest which I workout in twice a day. There are so many great things here today to help me!

Overall my growth and health have been pretty good. I’ve only had two setbacks this past year. Last Spring, I was having a lot of belly pains so I went to my doctors and had an xray. My doctor told me my belly was blocked up because my digestion wasn’t working properly. I then had to go in the hospital for 4 days. The hardest part wasn’t the IV in my arm, the drinking of a yucky drink or the multiple doctor visits. It was not being with my sister. Boy did I miss her a lot! Luckily for me, my Mommy and Daddy slept with me every night in my hospital bed. That made me happy (and them too)!

Over the summer, I tried to take advantage of the warm weather as much as possible. Since there are less germs & colds, I’m usually at my healthiest. This means more playtime with my cousins Sophia Rose & Luke and all my friends! For starts, I went to a really fun art camp at Church Street School of Music & Art with some buddies, played at the parks in Battery Park City and swam alot in Mama & Papa’s pool with my sister. Summer was so much fun- and I knew Mommy & Daddy were not as worried about me either.

When the Fall time came, I had to become more aware of where I went and who I played with. School time usually means lots of coughs & germs so I have to be extra careful not to get sick. When I get sick, I risk the chance of building up mucus in my lungs and getting an infection. The more mucus, the weaker my lungs and the harder it is for me to breath. To help with my exposure to germs, I currently go to school part-time. My school, Chelsea Piers Kids, is so awesome and has really done wonders for me! I’ve grown up so much and am learning how to take care of myself on my own. This is really important for me because as I get older, my Mommy won’t be with me to tell me I can’t sit next to my friend if he’s coughing or sick. It’s still hard for me to understand but I’m learning.

During the holidays I started to develop a really bad cough. I went to see my doctor and she told me there were some spots on my lungs. Bummer- it looks as if I had a lung infection. I immediately started a 30day inhaled antibiotic treatment and increased my other meds and vest therapy. The other option I had was to go into the hospital for 2 weeks but since it was the holidays, we decided on the home therapy. Fortunately, the home therapy helped me. Thank goodness it was the holidays. I was able to spend so much time with my family, make lots of cookies with Mama, play the accordion with Daddy, wrap tons of presents with Mommy & Skylar-Rose, go to the Rockettes at Radio City with my whole family and get to stay up past midnight with Papa & everyone to see Santa.

Fortunately, I’m doing much better now. I still have to take lots of extra medicine and workout even more but I’m happy and surrounded by love – and that’s what matters!

Thanks so much for all your love & support! I am so thankful to be given the chance of living a fuller life and growing older with my sister, family & friends…

Big hugs and many kisses,

stanley

Stanley Richard from NYC (and Skylar-Rose too!)