Anthony is our ray of sunshine! He is 9 years old, and has been healthy for 2 ½ years. We fought to keep him alive for the first 7 ½ years!
Anthony was born with Trisomy 21, also known as Down Syndrome. Children with DS tend to have low tone muscles. They are “floppier” than typical children. When we “got” Anthony at 2 weeks old, Andy and I had to stay overnight at the hospital to learn how to feed Anthony properly, so he wouldn’t aspirate on his formula.
Anthony had a heart defect called Tetralogy of Fallot. This allowed non-oxygenated blood to mix with oxygenated blood in his heart. When a body deals with this, it burns so many calories and it is very difficult to get a baby to grow big enough to have the best chance with surgery. We had to learn to mix formula high in calories. Anthony needed open-heart surgery to fix this at just 3 months old.
One thing I remember about this time was getting pictures done of Anthony the day before, so we’d have some classic baby pictures of him, before he had any scars. Surgery was the day before Thanksgiving that year. Everything went well, and the surgery was actually pretty routine. To us, it was anything but routine!
Anthony continued to heal, we learned to pick him up in a scooping motion, supporting his back, and everything healed as expected. We went for regular post-op checks, and everything was wonderful! At the 6 or 9 month post-op check, the cardiologist said we didn’t need to come back anymore, except for yearly. He said we could treat Anthony like any other child and not make everyone be germ-free if they were around Anthony.
Well, I still worried, and for good reason. A couple months later, something wasn’t right. We went to the doctor and emergency room several times over 2 weeks, and finally were admitted to the hospital when Anthony’s oxygen level was at 60%. The nurses scrambled at this point. Anthony’s lungs had pneumonia on the x-rays, and so bloodwork was taken to determine what kind. The next day, the pneumonia had disappeared, but that bloodwork showed that Anthony had leukemia.
Anthony and I had 15 minutes to be packed and in the ambulance to Seattle. My middle 3 children were at Seattle with Anthony and me for 14 months, while our oldest 2 children stayed at home with Andy. Our family was physically split for most of that time. Our greatest gift during the 14 months came from my friend, Jenny. She arranged for a hotel suite for our whole family at Christmas time, so we could all sleep under the same roof. Ronald McDonald House can only have 6 people in a room overnight and we have 6 children.
We finally got to come home in February 2011. We had left to Seattle on Dec. 3, 2009. You don’t forget a date that turns your life so completely upside down! On a more positive note, Anthony’s adoption was final in Nov. 2010!
For another 2 ½ years, we regularly commuted to Seattle for appointments and chemo. A few times, Anthony developed pneumonia which required a long stay at Children’s.
After chemo was complete, Anthony started getting sicker, especially when we traveled at higher altitudes. Going to Children’s was dicey because his oxygen would plummet when we’d get to the top of the pass! We had a real scare when our family went on a cross-country road trip and were stuck in Colorado a couple days in really high altitude.
That fall, we used oxygen all the time to help Anthony. If he had a runny nose, his lungs couldn’t keep up and he’d need oxygen. Same with a sniffle or any tiny symptom. Finally, our pulmonary specialist (who travels to Wenatchee for Children’s regularly now!!), discovered that Anthony’s left lung was squished. The lung wasn’t moving at all. There was no way to know if it was paralyzed or if it just didn’t have room to work.
Testing was inconclusive. The only other option was surgery, and that was just a possible solution, not definite. Anthony had surgery, where a diaphragmatic hernia was discovered and repaired, a kidney was put back where it belongs, and his intestines were put back where they belong. The kidney and intestines had moved because of the hernia. The surgeons never expected Anthony to have such an amazing outcome to this surgery, and joked at the post-op check a year later that we come basically just to tell them hi, because he is doing so well!
Anthony finally stopped being so sick around 7 ½ years old. His time before that was basically just a whirlwind of just trying to keep him alive and trying to stay one step ahead of any more diagnoses. We never really had a chance to think about Anthony’s future, and especially education. We never knew if he’d live long enough to get to go to school.
Now, I still worry about medical stuff and am always on the lookout for odd symptoms. I don’t even know what’s normal to send a child to school with anymore. Runny noses? Small cough? These were things he couldn’t be around for so long.
But, more than medical stuff, I worry about Anthony’s chance at indepence someday. I worry about him receiving the best education possible. He has a wonderful teacher now, and he loves school. He loves to learn, play, and interact with EVERYONE at school, home, church, and around the community.
We continue to utilize therapies aimed at maintaining and improving abilities for Anthony. He has had physical therapy of some form since he was 2 weeks old, along with Speech therapy and Occupational therapy. Anthony actaully graduated from Ohana Occupational Therapy today, the day I am writing this post . Because Anthony has weekly swim therapy, his lungs actually did much better before the last big surgery than they would have had he not done the swim therapy. Anthony participates in Cub Scouts, and loved being in hip hop dance a couple years ago. We are looking to continue that. And now, Anthony is starting to participate in Special Olympics!
It seems like there’s a different cause or some awareness campaign every month. They more often than not seem to apply in some way to Anthony. He’s a success story for foster care, adoption, congenital heart defect, childhood cancer, diaphragmatic hernia, and of course, Down syndrome!
I am so grateful that when we were missing someone in our family, that Anthony was the someone who filled the void we had no clue was there!