An Update on Joel in Honor of Apert Awareness Month

So, June is supposed to be Apert Awareness Month! I have to admit that this will be my first time I can remember to attempt to participate in an awareness month, although I have benefited and loved learning from other people who are voices to bring awareness to so many different things during awareness months. I thought this would be a good motivation to me to update you all on the many wonderful strides Joel has made these past months as well as continue to share our journey for others who can benefit and learn.

We are at a place where we don't think too much or too hard about Apert Syndrome-it has just become a part of our normal daily life. Of course, we are reminded of Apert Syndrome through the many therapy sessions Joel receives. We are reminded of it when we have trouble finding Joel shoes and spend twice as much money on his shoes than Michayla's. We are reminded of it when we give him his nose spray for OSA every night. We remember when we see his left eye turn out and when we hold his sweet hands. We especially remember when we carry him because he still does not walk independently. These things really do seem minor to us though as we move towards progress!

We forget all about Apert Syndrome when we see Joel playing tag with Michayla. We forget when we see him wanting everything she has and have to teach him to share. We forget when we hear him count to ten in both English and Spanish pretty much by himself. We forget when we see him eat soup all by himself very efficiently with a spoon. We forget when we hear him singing "gracia" over and over again to his Gaggy's Spanish song (and when he insists this be the song he falls to sleep to). We forget when we are driving through our town and realize that he knows where the ice cream shop is (and cries because we don't stop there) and knows where we buy our fresh corn tortillas. So many things about our life are just so normal and typical (although-what really is normal and typical for anyone nowadays?) Joel really is just a little individual with his own sweet thoughts and personality! He is a boy that loves his cars and loves his daddy, wants to spend all the time he can outside, and loves to be silly and laugh!

Speaking of Joel being a little individual, we are really enjoying this stage in his life! He continues to be our happy, go-easy little guy (for the most part), but is really starting to express his own opinions more and more as 2-year-olds tend to do! Joel is very decisive and knows what he wants. He knows what car he wants to play with, what book he wants us to read to him, what song he wants to listen to, and what color is his favorite (currently yellow). He is talking to me all day long now, with over 100 words in English and Spanish under his belt and starting to put a few words together. He can draw circles and both horizontal and vertical lines, as well as manipulate toys and objects very well for his age. He understands everything we say to him and is doing great!

The area we continue to struggle in the most with Joel is helping him with his gross motor skills. We have seen so much progress and have made huge strides in these past months with his therapy, but he still lacks the confidence to try walking by himself! We are so thankful that he is now cruising well between furniture, along the wall and walking well with a walker, climbing up and down by himself on low furniture, crawling up and down the stairs, crawling on all fours when he wants to be silly (his favorite form of getting around is still scooting on his bottom) and pulling up at all kinds of surfaces! A year ago these accomplishments seemed like mountains to climb! Please keep him in your prayers as we continue to push him towards walking and standing by himself with no support!

We also continue, with his ophthalmologist, to determine the best course (and definite surgery) to correct Joel's eye problem, as well as monitor and keep under control the mild Obstructive Sleep Apnea he has struggled with. We are so thankful and happy to report that when Joel had his last MRI, his neuro-surgeon gave us great news! The cranial vault expansion did it's job and has given his brain the space it needs to develop well. His brain looked as good as it could, with no complications or additional issues to worry about, and his neuro-surgeon anticipates seeing him again in another 5 years to screen again, unless his cranio specialist sends us for a routine screening sooner. We are truly thankful!

It is amazing how our lives change and adjust to changes as we face the unknown turns and twists of our journey! It is amazing how each of our stories are so unique and different! And it is especially amazing how God weaves the details of our lives into His great story for His greater purposes! Thanks so much to the many of you who continue to ask about Joel and love him and our family through this amazing walk of healing.

Working hard during therapy!

Very into hats!

Getting his vision tested!

Little painter!

Still best friends!

Very excited to be driving Daddy's truck!

We are blessed and excited to have my mother-in-law with us for almost 3 months this summer!