Tuesday, August 26, 2014

Happy 4th Birthday Super Joe!

Joey has a new trick among others right now. It involves him leaving the room and rushing back in and saying "I'm back!" It's hilarious and cracks us up every single time. It is also how I feel writing this post. Our last blog entry was March 20th.  March 21st I was co-chairing a huge fundraiser for Down syndrome awareness on World Down Syndrome Day and then on the morning of March 22nd I was in the ER.  Less than a month after that I was in the ER again, only this time it was with a searing pain that ended up being a burst appendix followed by 10 days in the hospital (which almost turned into 2 weeks, but we begged to go home) and another 30 days of in-home nursing care for my open wound (which was my Mom living with us for a month taking care of me and the kids), an IV port, a wound vac and many other adventures. 

Getting ready to brush Rufus at Victory Gallop
The other big news that has occurred since April 17th is that we are expecting our 3rd baby! Baby girl is due September 26th, but right now we have a c-section scheduled for September 22nd. We have our last ultrasound scheduled for tomorrow and we are all anxiously getting ready for baby along with Tommy starting Kindergarten and Joey getting ready to go back to school.

The ruptured appendix while being pregnant adventure is a story for another day. And what a story it is! Today is not the time to go into the wild adventure our family has been on since April. 

Instead, today is a story of celebration. A story of gratitude. A story of counting blessings large and small.

A story of how I haven't been allowed to pick up Joey and hold him or carry him since April 17th and what that has meant for his growth and fortitude.

Speech therapy with Miss Donna has worked wonders!

A story of a little boy who was given a 2% chance in utero of ever surviving and who is now thriving and growing and becoming a precocious, hilarious and intelligent big boy.

It's strange because I spent almost all of Joey's pregnancy worrying and praying and wondering what would happen. It seems as though I possibly used up a lifetime of worries during that pregnancy. During this pregnancy (which has had no short dose of drama, fears, health issues and more), I have not succumbed to that devil called fear. Now and then I worry about all the medicine I was taking when I was sick, about all the CAT scans and as most parents do I worry about what potential problems or issues baby girl may face, but if I have learned anything from Joey, it is that worrying will get you no where. 

All of that time and all of that energy I wasted wondering and worrying about Joey's life and his health- it was all a waste of precious time. Life moves much too quickly and the kids grow up much to fast for me to put any stock into worrying about things I have no control over.

For our family, the silver lining that has come out of this very trying pregnancy is that Joey has learned incredible independence. 

Joey's hero- Tommy.

He has started taking independent steps! His language and speaking have skyrocketed. His memory and ability to remember people he has met before shocks and awes us every day.

Part of his growth this year is due to him finally going a full calendar year without a single surgery. Prior to turning 3, Joey had 7 operations and 4 different hospitals. Heart surgery at Michigan, three eye surgeries at the Cleveland Clinic, ear surgery at University Hospital, and then multiple procedures including tonsils, adenoids and ears at Akron Children's Hospital.

His last surgery was a year ago. We think that finally being free of all the anesthesia and all the recovery has given him new wings and energy to grow like never before!

Despite an intense schedule that includes preschool every morning and then Physical Therapy, Speech Therapy, Horse Therapy, Occupational Therapy and Music Therapy in the afternoon- Super Joe is making super strides.

The 2014 Buddy Walk.

Does he ever get grouchy? Oh, you better believe it. Joey has a personality all his own! Don't ever believe the generality that people who have Down syndrome are happy all the time. Joey would love to disprove that misnomer.

Before Joey was born we thought so much about him having Down syndrome and what it meant to have Down syndrome. Then, when he was born, we would look at this little person and wonder if we would ever see beyond him having Down syndrome.

I think that is what is most incredible now. Days go by without us thinking about Down syndrome. We have truly come to a place where we see Joey first. We see an amazing, spirited little boy. Down syndrome has slowly but surely become secondary. It is still a priority for us to advocate for individuals who have Down syndrome and to support the Down syndrome community to the best of our abilities, but what is better is that Joey's life to us is not defined by him having Down syndrome-- it is defined by all the possibilities that all children have. Who will this little boy become? We don't know. We are just grateful to be along for the ride.

Some major milestones-

Joey got glasses!  Now the key is trying to get him to wear his glasses.

Joey has started walking!!!! THIS IS HUGE!!! He turns 4 tomorrow and we have all been working with him for years on this. He is not a full-time walker and we cannot go to the mall, park or doctor appointments without the use of a stroller- BUT- he is taking steps.  Independent steps!!! ALLELUIA!!!!! 

His horse trophy is present at every meal!

Joey is officially a horse rider! He holds his own reins, he can stand and "post" on the horse. He is doing incredible. He just finished his first year at Victory Gallop and it has been a game changer for him. 

Joey has a LOT of words. He talks a lot. He even has some unsavory phrases such as "shake your booty" and "punch your face" that he likes to say and get a big reaction from, but he's doing so well that it's hard to try and stop him once he starts talking. He will also parrot almost anything we say. 

Joey recognizes a lot of people. People he doesn't see everyday. He remembers names and faces. It's incredible to witness his personality and memory.

Joey hasn't let go of his trophy since he got it!

Today we celebrate all of our blessings that Joey has brought to our life. Today we thank God for giving us this amazing child. Today we are thankful to everyone who has helped us during this crazy time to take care of Joey and Tommy, drive Joey to his therapy sessions, pick up Joey at camp. We are just so very grateful for what started as a very tough situation and has turned into many blessings for our little boys.

Happy, happy birthday Super Joe. You are our hero, our blessing, one of our precious sons! Keep up the hard work- you are INCREDIBLE!!!