Superhero Ben

It's been a while again so here's another update about Ben's journey thus far. Sorry this one might be lengthy as we have almost an entire school year to cover.  Ben recently just celebrated his 6th birthday! Year 6 is bittersweet for me since he's physically out of that toddler phase and doesn't fit on my lap as well and picking him up is a workout to say the least. I know it's all apart of growing up and milestones (not just for him but us as parents as well) but still stings a little if I am being honest. He'll be my baby Ben forever!!!  From the Doctor: At his 6yr check up he grew 3 inches and gained 4lbs since August. Medically he is overall healthy and right on track for his growth curve. He receieved a new set of SMO's (braces for his ankles) that continue to help him with balance and stride while he walks. We are also going to have him seen by an ENT soon for concerns about quality of sleep. We have noticed he mostly sleeps with his m

It's been a minute since I've updated everyone on our still superhero loving Mr. Bennyboy so here goes nothing... Since my last post man this kid has moved mountains in terms of maturing and doing some things all on his own. Some things, well, we are still working out the kinks but Ben is amazingly resilient! I know most moms say this about all their kids but I just know in my heart this kid is going to do big things in his lifetime, syndrome or not!  We had a few appointments this last spring and summer and things are looking good in terms of overall health. He graduated out of peds cardiology and they don't want to see him back unless his pediatrician warrants it necessary meaning his murmur has subsided enough/isn't audible anymore. WOOHOO! He's also been seen by endocrinology and they believe he's on track for the time being. Possible hormone replacement may be a possibility once he hits the pre-puberty age (around 9/10). That part comes with the

I promised an update so here were are again. Again, I am not a writer so please be kind. I am searching for the words this time since we really got the "no news is good news" this go around but I'm calling it a win for now.  We've seen numerous specialists throughout the years and we've always just gotten the "well expect this" or "he's behind in this so don't expect it overnight" comments from the doctors and therapists and this time wasn't really that different but Ben's milestone is what I am counting my blessings about this go around and I'll get to that here soon but here's the lowdown.  Today we finally (after 6 long months, thanks Covid) got in to see a pediatric neuromuscular doctor through U of I healthcare team. Why was this even a thing for Ben you ask? Well his developmental doctor is trying test everything possible and make sure that this gene mutation isn't going to alter things

So I have been stewing this over in my head for months now whether or not to post something about it but I feel like once I do then better discussions can happen along with maybe some answers to questions that I have gotten from several friends and family so here goes nothin' 🤷‍♀️ This is a story about a kid who likes to call himself Superhero Ben. Now, I'm no writer so please be kind 😋 Adam and I dreamt and planned, went to numerous doctors appts (regular/fertility) for 5+ years after getting married to be blessed with one of God's greatest gifts, my Benjamin Eugene! My pregnancy was a relatively uneventful pregnancy, he was larger for gestational age and his head circumference was off the charts so they decided a c-section was best. We scheduled it, the day came, he was delivered and all was glorious! He was a beautiful, chunky, easy going newborn that slept through the night and we were so unbelievably smitten! Get to his 2 week check up and things began