That uphill battle doesn't seem so steep right now

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 further in his life that's why. Ben not only has the CHD4 mutation but another abnormality (not mutation but a variation) in what's called the PLEC Gene. This in unison with his gene mutation can cause things as serious as muscular dystrophy in some patients and so we were seen to rule that out since he has low muscle tone in different areas of his body. Turns out the dr is very pleased with what she saw, he does have the low muscle tone but he's not presenting any blood markers or strong deficits that would lead them to believe they need further testing for muscular dystrophy. THANK YOU JESUS!!! Prayers answered there for sure!!! We are to just check back with them if he shows signs of weakening or becomes more fatigued easier with his every day routine which would warrant for further testing.

So, a little back story here: since Ben was diagnosed with his heart murmur so early on, he's been messed with and poked so many times now that he has developed a real dislike for doctors and medical personnel. Adam and I have done our best to make each time we go fun, bringing his favorite snacks and toys, allowing him to watch his pick of shows on our phones etc. but it's always ended with him starting to scream and cry as soon as he sees anyone with a stethoscope come near him. Were talking melt to the floor, kicking, yelling "NO!" stuff you see in those scary movies where the girl ran up the stairs instead of out of the house and now she's being tortured to death screams. I have video if anyone doesn't believe me. And we joke but it's kind of true he literally "Hulks out" and uses every bit of strength to get away. 

So from this you can only imagine the level of anxiety that starts to build in Adam and I whenever another appointment is scheduled and the day comes we have to basically rock, paper, scissors who is taking him this time. 

Well today was my turn. I had prayed about it last night and asked for his anxiety over the doctors office to be eased. We were getting his braces and shoes on and he was already starting with the "mommy we go doctor? no doctor today mommy" so I was reassuring him it's "just a check up and there aren't any owies this time" just preparing myself for the inevitable meltdown that was in our future. We then pull into a parking spot, I let him pick which mask he is going to wear, he chooses the Iron Man mask and with tears already forming in his eyes we start towards the door. I don't know what it was about that superhero mask but low and behold somewhere between the parking lot and the door something changed. He walked into the waiting room and he goes "Hi everybody, I'm Iron Man Ben!" and then proceeds to WOW everyone in his path (including his mother...ehhmm me!) with his ever so fun loving spirit. The Doctor and student she had assisting her were both praising him and giggling at how he answered their questions. I.E. "Ben, this is my reflex hammer, can I bonk it on your knees and a few other places?" Ben responds with "OH WOOOW! Bor's (Thor the superhero) Hammer!?! Let's do it!" 

You guys...I was in utter disbelief that this was really Ben. We have never gotten through a doctors appointment without tears (some shed by me at times) let a lone him singing the Team Umizoomi theme song to the residents in the hallway. It was such a prideful moment for me. He's always been so troublesome at appointments and for him to jump this maturity hurdle is HUGE for him. He's not only growing up physically now but he's becoming this charismatic little spit fire that just makes me so grateful he's mine. It gives me hope for his deleveopment. He's come leaps and bounds just this year alone and I'm just so so proud of who he is becoming and what possibilities are in his future. It doesn't matter however many more doctors appointments we have or hurdles we have to jump, I know he can and will persevere. I love you my Iron Man Ben!