4 weeks ago.
My last post was 4 weeks ago. And, it wasn’t even my post. It was my dear friend Michelle’s guest post. I am guessing it was the busyness of the school year ending, writers block, laziness, or a bit of everything combined, but I need to get back on the saddle.
Here’s the skinny on the last 4 weeks: Continue reading “Back in the Saddle”
Jayden and Brooklyn spend a ton of time at doctors offices. Days of being weighed, touched, poked, and tested. In fact, we just got back from participating in the Natural History Study of Sanfilippo being completed in Columbus, Ohio. We started in July and this was our six month check up. I am sure you all want the details because the doctors there are working on gene therapy-a potential cure/treatment for children with Sanfilippo.
Come on in and get comfortable! I like to imagine you stopped by for a warm cup of coffee and great conversation. We both put a blanket over our legs, the warmth of the sun shining through the windows. The table is sticky, but we don’t care. We talk, we laugh, we learn, and we cry.
This blog is my humble attempt to chronicle my journey and give you an inside look at my life with three amazing children who continue to reveal God’s beauty to all who choose to look. I would love for you to join me as I navigate both this beauty and the pain, and as you do, I hope parts of my story resonate with yours. Because at the end of the day, we all experience beauty and pain at one time or another, right? And oftentimes, they even co-exist.
Trying to catch up….
April 5, 2012:
AFO’s
Jayden’s new additions are AFO’s….an orthotic boot/sock that he wears at night to help keep him from toe walking. He is tolerating them well.
October came and went this year with no mention of it being two years since our diagnosis. And, that is just fine with us. As we settle in to this lifestyle, we have learned to really embrace Sanfilippo as a welcomed friend more than an intruder. Let me be very clear. It pains me to see Jayden regressing. It hurts to see Brooklyn still progressing, knowing those skills will soon be a memory. That is my human desire talking. But, I can spend my days counting down till we loose them, or just embrace them while they are here.
Friday we went to Jayden’s fall fest at school…it was CRAZY packed and a bit unorganized, so we didn’t stay long. Saturday, we hung out at the house all day and watched the men work on the house and Sunday, we took the kids trick-or-treating on Boyce lane to the grandparents and aunt and uncle. We joked that next year we can just meet them in the driveway! The kids enjoyed playing king of the hill with Bubba better than trick-or-treating! Gotta love trying to get a family photo….but we try!
