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!!!

Thursday, March 20, 2014

Celebrating 2014 World Down Syndrome Day- No More Worries!

Almost exactly four years ago we found out during our second pregnancy that our baby boy, Joseph David, had Down syndrome. We had a prenatal diagnosis and to this day I will never forget the geneticist telling my husband and I that our son did indeed have an extra 21st Chromosome. Trisomy 21. Down syndrome. Words I had never thought about before.

At the time and for a long time after I remember worrying, worrying and more worrying. Worrying about things that I had absolutely zero control over. In some cases I felt like I was worrying just for the sake of worrying. I was worrying because somehow I had gathered from society that I should worry. How would we raise a child with Down syndrome? How would he get along with his brother? 

I worried about whether he would ever date. Ever get married. Ever get a job. Would he have friends? Would he need more care and more love than I could provide him with? Would he be funny? Have a sense of humor? Fit in our family.

My worries came in all sizes. Large and small. They were never-ending. Exhausting.

And a complete waste of time. Oh, the time I wasted worrying. The nights I would lay in bed and worry and wonder what in the world would happen to this child of ours.

The energy I spent was endless. I worried and worried and worried. 

What we learned was that the worrying was pointless. Every little moment spent wondering and worrying was time that was wasted and that I could never get back. 

Today we practice a different approach to raising Joey. It's called living in the present. It's called being present. It's about enjoying Joey where he is right here and now and trying our very best not to worry about tomorrow, next week or next year.

Instead of worrying we focus our energy and life towards helping Joey be the best he can be. We do Physical Therapy, Occupational Therapy, Speech Therapy, Horse Therapy, Swim Therapy and we just added Music Therapy to the mix. We try to expose him to the world and help give him opportunities to socialize and just be a little boy. 

Instead of worrying we devote our family to advocacy for Down syndrome and to helping raise awareness by volunteering for organizations like Stand Up For Downs, and Buddy Up Tennis as well as other organizations like The Up Side of Downs and United Disability Services

Instead of worrying we work on helping the world and the community realize that individuals with Down syndrome can do anything! Hold jobs, get married, workout and so much more. 

Instead of worrying about if Joey will ever have a job, I daydream about where he might like to work. 

Instead of worrying about if Joey will ever start to walk on his own, I daydream about when he starts running and I have to chase him.

Instead of worrying about if Joey will ever be able to fully talk and communicate, I daydream about the funny things he will say.

Instead of worrying- we are living. We are celebrating World Down Syndrome Day 2014 and we hope you will celebrate with us. Thank you to everyone who helps make our world a better and more accepting place for individuals with Down syndrome every single day.

To every single person out there with Down syndrome- this one is for you! Happy World Down Syndrome Day!!!

Monday, February 24, 2014

Congenital Heart Defect Awareness Month - Honoring Super Joe's Amazing Heart

We spend the majority of our time raising awareness and advocating for Down syndrome, however, there are other causes that Super Joe's life has helped us to become more aware of and that have made us more cognizant of the lives of families with children who have extra health concerns around us. 

Photo by Nat.
February is Heart Month and approximately half of all infants born with Down syndrome have a heart defect. Many of those defects have serious implications and require surgical intervention.

When we were just 22 weeks pregnant with Joey we learned that he might have a heart defect. Within two weeks were had a fetal echocardiogram and his congenital heart defects were confirmed. Joey was born with an Atrial Septal Defect, which is a large hole between the two collecting chambers. Additionally, he was born with an abnormal mitral valve, which in his case is a cleft mitral valve that causes leakage.

Photo by Nat.

Most recently we found out he also has a PFO, which is a Patent Foramen Ovale. In 75% of the cases a PFO will close on its own shortly after birth. Usually this is a heart defect that is caught early on, but we did not know about Joey's until his last echocardiogram with his cardiologist. Plus, we have learned that Super Joe never settles on being "typical" or playing by the rule books- he usually has his own entirely unique spin on every condition. 

Learning about Joey's potential need for open heart surgery while we were pregnant introduced an entirely new world to us. Suddenly, fetal hydrops and a diagnosis of Down syndrome took the back seat and we were facing the facts that if Joey survived the pregnancy (of which he was given a mere 2% chance of being born) he would most definitely need open heart surgery to repair the large hole in his heart. 

Instead of maternity visits to the high risk fetal medicine doctor, suddenly we were in the waiting room of the Akron Children's Heart Center along with children of all ages waiting to learn the latest on our babies' heart condition.

Photo by Nat.

Joey's cardiologist at Akron Children's is incredibly professional, incredibly skilled and was 100% accurate in his diagnosis. I still remember the day he told us that Joey would likely need open heart surgery to repair his ASD. He said it with such compassion and care and he told us that he truly hoped he was wrong. Unfortunately, he was far from wrong.  He was completely correct and from that moment on we started the long waiting game of trying to figure out when and where Joey would need his heart surgery after he was born.

Looking back now I can hardly believe the numbers of appointments, the stress, the worrying and the waiting that we all went through. 

After he was born we would spend every day wondering if his lips were starting to turn blue. We wondered if he would go into congestive heart failure before we could get his heart repaired. I honestly don't really know how we survived those final months of pregnancy and then those long 9 months until he finally had his heart surgery at the University of Michigan.

Joey and his heart surgeon, Dr. Bove.

Seeing him for the first time after surgery.

Seeing Joey for the first time after his surgery was surreal. He was in a medically induced coma, his little body was swollen from all the fluids and his hair suddenly had taken on a strange neon yellow quality. He was alive. But he just wasn't quite Joey, yet.

After nine long days of Tom and I staying beside his bed day and night we were finally able to make the three-hour drive home back to Ohio. 

I remember a conversation after we returned home with an acquaintance who made the comment  that she didn't really understand what the big deal was since it was just a "routine heart surgery." Needless to say, we aren't really acquaintances anymore. Any surgery, any procedure is anything but routine for the child and the parents who watch their child go through it. For us, open heart surgery was unmarked territory. It was terrifying for all of those months through the pregnancy and then all of those months while we waited for his heart to grow bigger and to finally have the surgery.

Knowing that his rib cage was being cut open while we sat helplessly out in the waiting area nursing cups of coffee, knowing that he would have drainage tubes and scars and that he would be in pain and would have no way of telling us was anything but routine. It was hell.

His first smile after surgery.
Tubes and wires were slowly removed each day.
But he made it. We made it. We all survived. Joey's Congenital Heart Defects are a part of our lives. We take any illness very seriously. We cringe when he eats a blue sucker or Popsicle. We continue his yearly appointments with cardiology.

And we wait. We wait for that day when his cardiologist tells us it is time to do it all again. When he tells us that the time has come for Joey to have another surgery to repair or replace his Mitral Valve. The problem is, when he had his first heart surgery, the surgeons were not able to repair his Mitral Valve because it was simply too small. Someday it will be time to do this all again. 

In the meantime, Joey is doing amazing. He is thriving. He is learning. He is working on talking--his latest phrase is "I am strong!"while he holds up his muscles. 

He is working super hard on learning to walk. He chases Hershey, Tommy and the rest of us. The past five months have been the longest he has ever gone without undergoing surgery and the difference in his health and stamina is remarkable. He finally has the opportunity to have all of the anesthesia out of his body and all of the trauma of the past three years of surgeries behind him.

In his first three years of life he had 7 surgeries at 4 different hospitals- Akron Children's, University of Michigan, The Cleveland Clinic (leading with 3 of those 7) and University Hospitals. 

We think that 2014 is Joey's year. We are hopeful that by the time the Buddy Walk rolls around on July 26th that he will walk over the finish line on his own.

Whatever he does- it will fill our hearts with love and pride. However he does it will be his own unique way.  

We are so proud of our Congenital Heart Baby and we are so grateful for the care and treatment he has received. If you have or know of a Congenital Heart Baby- we also send you our prayers and love for your own journey of the heart.

Photo by Nat.
As far as the next time he needs open heart surgery? We will cross that bridge when we get there and in the meantime we plan on enjoying every single day.