Update: Stand Still

Wow it's been a LONG time since I've posted an update. My apologies! This might be all over the place since its been so long. While Ben has continued to grow, unfortunately any new information about his syndrome is exactly the same. There have been a few more people diagnosed but no new research or articles written to give us anymore information on the syndrome itself. Luckily, the Facebook group we are in is still active and we are able to feed off one another's experiences with Dr visits and common symptoms/things that arise in everyday life. One of the parents went as far as to create a survey for the group that has helped us navigate and compare characteristics of people with the syndrome. They took matters into their own hands instead of waiting for the researchers to do so! I'm grateful for that! Other parents in that group are such great advocates for their children and the consensus is we all want the same thing, for our children. To grow up and become independent, loving and kind members of society. 

Ok back to Bennyboy, let's see...Ben absolutely rocked the 1st grade. He's still hard to understand at times but made huge leaps in his speech and communication this last year. He's stayed on track (for him) with academics and has improved on writing and is starting to read. He recognizes words he commonly sees as well so that's a huge improvement from last year! He continues to amaze me with his charismatic gestures and showman attitude. "Ladies and gentlemen, boys and girls, introducing me, Bennyboy!" is how we are greeted some mornings and his love for lip syncing and music is just a sight to see let me tell ya. 

This past August he started 2nd grade...you guys...my little squish is in 2nd grade now! I just can't! He's really gotten into sports, playing miracle league baseball, adaptive basketball and loves to watch his cousins play football/our beloved Iowa Hawkeyes on TV. He even got to be a kid captain for the Iowa Barnstormers and score a touchdown at Iowa State's Victory Day '22 & '23. With that positive and sunshine personality how can people not love to give him these opportunities? We are so grateful others notice him and see him for the amazing kid we already know he is. 

My hopes are that he continues to shine bright and not notice his differences even though I've seen his frustration with not being strong enough or able a time or two. He's still young enough he doesn't notice it academically but that day is coming as his peers are moving ahead and he has to work harder at what comes naturally to them. I just pray I have the right words of encouragement and he's able to see how far he's come even with some of his challenges along the way. 

Medically, nothing too new to report, he grew 3+ inches last year (seems taller every day) and is on the right track with growth and hormones through endocrinology. With his syndrome, males seem to be on the shorter side but for now he's growing like a weed so we will take it! They will address his hormone levels and growth as he gets closer to puberty. His eye sight has a slight astigmatism with a little far sighted-ness (not a word I know lol) but nothing his eye Dr is too concerned with correcting just yet. 

He's still in SMO's (ankle braces) as his feet and ankles are still turned in pretty significantly. These give him leg/foot cramps at times but we try our best to keep him hydrated and use a little ibuprofen when they get too bad. 

So there's a quick update. I'll try my best to not take as long between these next time and maybe actually get back to writing about the bright spots and accomplishments of our little superhero...BEN! 💛