Char and Joe

While my pregnancy was on right on track, I developed preeclamsia. One day Joe wasn’t moving as much as they like and they rushed me to Abbott.  He was born at 33 weeks at 3 lb, 11 oz.  After the nurse tried feeding him, he could only spit it up.  We found out Joe had Tracheoesophageal Fistula with Esophageal Atresia. This is a condition in which  the esophagus is not attached to the stomach.  During this time, Joe was fed by a feeding tube.  He had a few surgeries before they could try to attach his esophagus to his stomach.  The day came when he could have the reattachment surgery, only to find out his esophagus did not grow and develop appropriately.  It was very weak.  Due to this, he had a tracheostomy tube put in.  After securing around the clock home nursing care, After 5 months of being in NICU, Joe was able to come home.

 

When he came home, the therapy schedules started.  He had OT, PT and food therapy.  Joe had to learn how to eat. He had to learn how to crawl with the trach tube.  At two years of age, we could start to hear his voice through the trach and he was able to get it out.  The feeding tube stayed in a little longer to make sure he got the right nutrition.

 

Due to his premature birth, being on a ventilator for some time, on sedation drugs, he will always have to live with the repercussions of his prematurity.  The doctors were not sure how it would affect Joe in the future.  Joe needed more processing time and time to work on his coordination from missing out on early developmental milestones.  At about first grade, he was diagnosed with Attention Deficit Disorder.  Then in later middle school they said he was on the Autism Spectrum.

 

Despite Joe’s rough start to life, Joe keeps reaching his goals.  Everytime he reaches a goal, we set a new one.  Joe has an amazing attitude and effort that we can all learn from.  The doctors always told us he was a “miracle” baby.  We were not sure if Joe was going to drive.  We had a driver evaluation done and they gave us the blessing that Joe could drive. After two years of having a permit, Joe decided to try for his license.  He did it!  While it takes time to build up his confidence, he does drive to familiar places.  Since High School, Joe attends the Transition Program and is taking a few classes at Hennepin Tech.  Joe hopes to one day get a job with computer networking.  Currently,   Joe works at Target and Sam and Friends.  Sam and Friends is a local shop that employs individuals with disabilities.  Joe is also an active member of Special Olympics and plays basketball, softball, and bowling.

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While Joe has overcome many challenges, many continue to arise as he is getting older.  We are not sure what his independent living will look like in the future.  It may be attainable.  It may not.  Joe still struggles with some of the fine motor planning that is needed for cooking.  I am confident Joe can live independently if there are some supports in place.  That is why the Eva Sophia Project is so important to me.  I get excited when I think about having a place where young adults can be in their own apartment while knowing they have support.  I get excited to know friendships would be made.  I get excited to know they can be active in the community.  The Eva Sophia Project is just the answer we all have been looking for.  What a great asset this would be to our community!