Tegan

Age: 18 yrs 11 mos old
Duplication : 46,XY,rec(4)dup(4p)inv(4)(p12q35)
Lives in: Idaho, USA

After reading all the highlights it brings me happiness to introduce you to our bubba whom I believe is one of the oldest 4p friend in this beautiful group of angels. I am not going to be able to give exact ages because let me tell you it’s been a LONG 19 years and some of it is simply a blur. However, it is 19 years that we would never give back. Tegan is the 2nd of three children he came into the world after a normal pregnancy without any complications at a small 5lbs 12oz 19 inches long. Hey was in the nursery for what seemed to be a very long time from what I remembered from my first baby, then the nurse came to me and wanted to know if I was going to come down and see and hold my baby, now wait, just 2 ½ years ago they brought my baby to me I was confused, “oh didn’t you know we were waiting for the life flight team he is being flown out his breathing isn’t quite right.” I went there to hold him I remember him not looking quite right to me you know the gut feeling mothers have he looked like a squished old man face with his low set ears, small flat bridged nose, asymmetrical cry (reminded me of Sylvester Stallone in Rocky when he hollers for Adriane). Light flight got there and gave me the thirty questions all of which made me feel like a terrible mother and guilty for why my baby wasn’t breathing right, (did you do drugs, drink or smoke did you see a doctor for your entire pregnancy did you eat right were you stressed blah blah blah) no I took care of myself and my baby. 

He spent 1 week in NICU and they sent us home with an apneic monitor and oxygen tank and we were told he holds his breath like a two year old throwing a tantrum (later to find out he really has tracheomalacia and his trachea collapses when he cries causing him to turn blue and pass out then relax enough to pink up and start breathing again). I do remember a time when they were coding him and Mark and I found the closest room to slip into it was dark and crowded we cried and prayed OUT LOUD for God’s help for our tiny little baby. Once we collected ourselves and found a light switch we discovered we have slipped into the utility storage closet among boxes of papers and janitorial equipment but at the time we just needed a place to cry and pray and it worked for us. We took our baby home he continued to turn blue and pass out anytime he cried so we didn’t let him cry much. 

He was about 18mos old when his soft spots calcified and I asked our local MD about it he said that usually doesn’t happen and he sent us to a neurologist at Primary Children’s that was one of the longest days of our lives, the neurologist told us that he checked out okay but we needed to see a cardiologist so they sent us down the hall after a long wait there they did lots of tests and said her had a coarctation of the descending aorta that wasn’t causing issues at this time but needed to be watched as he grew(he has never needed heart surgery it grew with him), but the cardiologist thought we needed to see a geneticist and sent us again down the hall we waited again because mind you they all worked us into their schedules our geneticist walked in and instantly rambled off some syndrome he thought we had. He examined his tiny hands very closely looked at his little pudgy rocker bottom feet talked about widespread nipples his low set ears that were cupped like ice-cream scoops. He said we needed to do some further testing to know for sure. After a long wait we got a call that said Tegan has 4p trisomy syndrome and we needed to come back to the children’s hospital for further testing. We were told 75 documented cases in the world were recorded and that they were uncertain if he would ever talk or walk and we were sent home. 

  
So, determined that he would not be given any special treatments and we would advocate and fight to get him everything he needed to succeed. Thank goodness for early intervention and lots of therapists both in our home and at centers were we took him and he proved them all wrong. He scooted on his bum instead of crawling, then he not only walked but he ran, not so much now as his severe scoliosis and 2 bad hips that have legg-calve perthes disease in them slow him down some, he has a very high pain tolerance. He started out with some sign language and eventually replaced them with words and now he has a large vocabulary (sometimes he can be caught teaching his other special needs cousin signs haha). He has coloboma in his left eye, had 4 sets of tubes in his ears and still has chronic ear infections, and had his tonsils and adenoids out, he has developed asthma and gets frequent heart burn. He chokes on his food frequently and I thought maybe it had to do with his terrible crooked teeth that maybe he wasn’t chewing his food good enough so he had braces on his teeth boy that was a rodeo! He still chokes even after having straight teeth. 

Other than that he isn’t on any regular medications. He gets pool therapy weekly to stretch his muscles and help his hips and back. He graduated from high school in 2014 and walked the line with his class a HUGE accomplishment for us all. He is still attending high school (we call it college) this year as a “super senior” but he is really over it and ready to move on. He rides a three wheeled bike all around our sidewalks, he has a motorized 4wheeler which gave him the most freedom ever in his life because it’s his very own he makes the rules for it rides it BY HIMSELF and has the say if anyone else gets to ride it (which is usually never). 

He loves camping, ambulances, fire trucks, police cars, school buses, vacuums, tools (we have to hide them he is very destructive, I mean helpful) WalMart is his favorite store, his IPAD and Iphone5s (he runs them like a pro). He has a tattered tiny little bear named “Gundy” that he will move mountains for and never wants to be grounded from him, he is found in most pictures of Tegan for the past 11 years look closely you will see him either an arm or head or leg peeking from a pocket or just lying close by. He loves the movie series Emergency and often roles plays it with his dad. Root beer, Reeces, and cheese pizza are his favorite foods and he wants to work at Ace Hardware. He has more friends and acquaintances than me I can’t take him anywhere that someone does know him and he leaves a lasting impression on everyone he meets. He also knows no stranger and hugs anyone and everyone. If he has his mind set on something there is no changing it.

 He has participated in Special Olympics and has multiple medals to show for it, and played baseball for years. He has a sensory need he fulfills by shaking my arm vigorously and only mine… He has stopped growing at a whopping 4’ 10” so he still passes as 10 at the movies. We have just become a Certified Family Home so we can keep our son in our home now that he is an adult, we are working on MY Choice My Voice self-direct services and being creative coming up with things for him to do in the community and hiring people to work with him. And last but not least we are applying for guardianship of our own son, even though we have raised him all his life, we have to become his guardians so something doesn’t happen to him or the state can’t take him, all things to look forward to with adulthood. He has been a blessing to our family taught us unconditional love, he has taught our other children to love everybody for who they are. My husband and I have come to realize that our retirement will be different than most. 

If I could have advice for any of you it would be to hold strong always advocate and don’t let anyone back you into a corner when it comes to what you want for your special needs child they need you to be their voice and muscles for what they deserve. And also if you have other children don’t get so caught up in your special needs life you forget them because they need their special times too trust me time flies and next thing you know they are 21 and 14 and you are going wow how did that happen.