A certain Hero of the Brave kind has been driving us a bit nuts the last few days. Maybe it’s the weather, or the phase of the moon, but Parker has been moving at the speed of light with a never ending quarter added. In my mind I can almost hear it; “Boom!” “Smack!” “KaPow!” “Take THAT Pulmonary Hypertension!”
No, Parker hasn’t been declared cured. That’s not in the cards. Pulmonary Hypertension will always be a part of his life. However the extreme activeness of this kid of mine gives me hope. Hope that this damned disease isn’t getting worse. Hope that the next right heart cath won’t throw me into the depths of despair.
Today it was warm enough and the air quality was decent enough that we took Parker for a walk. Not in his stroller. Not in his wagon. But on his feet, making his own way on his own steam.
It used to be that I’d hold Parker’s hand as we made our way around the neighborhood. Not anymore. This kid has places to be and people to see, along with a very strong will of his own.
Today Parker walked and he walked and he walked. Yes, there were a couple of times when the walking slowed down a bit, but he went around our neighborhood THREE times. That’s 3/4 of a mile. I know perfectly healthy kids with Down syndrome that would call it quits before they traveled that far on foot.
We checked all the things that needed to be checked, heart rate, lip color, and oxygen sats. They were all good. Really good. After walking at an impressive pace for 3/4 of a mile for the first time this season. He did come back in and rest for about 5 minutes then was right back up and going strong. So much for wearing him out enough to take a nap.
Maybe that doesn’t make it high on your list of things that totally amaze. It sure makes mine. Especially considering that this was a kid nobody thought would make it to his first birthday.
We’ve been so blessed. We recognize each and every gift that has come from our Father in Heaven. Miracles are real. It is my prayer that there are still a few Miracles out there with Parker’s name on them. With your prayers and God’s will, hopefully my son will be allowed to be with us for a very, very long time.
Oh, my goodness! I am so THRILLED for both of you. I know a lot of kids without Downs Syndrome that would have pooped out before going that far. Praying for you guys, as always.
Yeah!!! I always knew this day would come! Great for you all!!
I just read your story and am crying with joy for your family and with 100% understanding because my son is fighting an extremely rare form of ph. Symptoms for two years, diagnosed for 7 months. He’s a 10 year old boy and I believe that he too had a miracle waiting to happen because we were told we had months in may and now its August and he is on an experimental drug that’s only been in less then 5 cases in two years. He’s amazing everyone by doing the same things as Parker. He is to wear oxygen all day every day, but now feels so hood some days that he takes it off and I find him outside or in the house doing a hop, skip or jog! Our Heavenly Father is the only physician that can tell us our outcome and I tell his team that every time we visit, that in Jesus name Collin can be cured! Please contact me, follow me, I am interested to keep up with your son! Fb Carrie smith sowerby
Carrie, what is the name of this drug?
Collin is on many, but the “miracle” medicine, as we like to call it is gleevac.