Stetson

Age: 12 years old 
Duplication: 46,XY,rec(4)dup(4p)inv(4)(p12q35)
Lives in: Idaho, USA 

It's been almost 13 years since I found out I was expecting my first baby. I was young and nervous about becoming a parent. I had been advised 6 years prior when my nephew was born with Trisomy 4p, that it may be a good idea to get genetic testing to see if I was a carrier to the same recombinant gene as my sister. I was pretty young so it wasn't on my priority to-do list then. Also, I had figured, they told her it was SO rare (the infamous "less than 100 documented cases in the world" that we've all been told) that I really wasn't too worried. My pregnancy was flawless, ideal actually, we found out that we were having a boy and all the ultrasounds looked perfect, aside from the dual vessel umbilical cord, which no one seemed too concerned about. So we just carried on like a typical pregnancy. 

  

Thursday, December 5th, 2002 was a cold winter day that forever changed my life, and my future as I had imagined it growing up. At 10:37 pm a teeny tiny 4 lb. 13 oz 18 in baby boy made his way into this world. Stetson Wyatt, he was the tiniest thing I had ever seen in my life. As everyone ooooo'd and aaaaa'd over him, I looked at my sister and I could tell by looking in her eyes, that she knew what I knew. His wide spread nipples, clenched fists, asymmetrical cry, twisted fingers, single pinky/palmer creases and rocker bottom feet were enough to make me realize that my sweet brand new baby had that same "OH SO RARE" chromosome disorder as my nephew, I KNEW he had trisomy 4p.

Instantly we started seeing doctors, and it seemed like the diagnosis never quite coming, with each new doctor came a new diagnosis and new specialist we were sent to. We heard things such as Ptosis, Amblyopia, Hypothyroidism, Hypopituitarism, Hypospadius, Bicuspid Aortic Valve, Growth Hormone Deficiency, Optic Nerve Hypoplasia, Septo Optic Dysplasia, Clinodactyly and GERD! Although, I feel like we held strong. It was a lot to take in, but the appointments finally slowed down, we were ok. I had already been through 6 years of this with my nephew, so we were good with it. Stetson was doing great, sure he was behind on his milestones but he was progressing at his own rate. We had this, It was all going to be ok......that's what I kept telling myself and it worked. We did therapies and play groups and he was just the happiest sweetest little guy ever. He started walking around 18 months and started talking 2-3 word sentences shortly after that, everything seemed better than anyone had ever given us hope for. He even attended general education preschool for 2 years and moved on to full time, with no aid, general ed kindergarten and 1st grade. He is now in a special needs program, which has been a challenge because he seemed to thrive better around typical peers, the school just doesn't see our side of it. Our latest setback has been the development of seizures when he was 10, that has hit us like a ton of bricks, and really has been harder to accept and deal with than anything else since he was born. But they are "controlled" for now, and we will keep chugging along with a smile on our faces! 

  
Still he is the kindest sweetest boy ever. He is always eager to pass out hugs and handshakes. Introducing himself to new people he meets, holding the doors for people, taking his hat off in public places..he tells me ~"That's good manners mom"~, man I love this boy! He has an amazing vocabulary and exceptional manners. He loves to ride his dirt bike, golf, shoot guns, swim, play with legos, Boise State football, watch mechanic videos on YouTube and he LOVES LOVES LOVES Blake Shelton. He is always his dads little shadow in the garage learning all he can about diesel trucks, mechanics and tools. He is also now a proud new owner of a baby goat that he will use as a 4-h project this year. He has tended to the every need of this goat and it has been amazing to watch. He is also the BEST big brother to Brooklyn and Jett. 

The crazy long list of diagnosis that are in a file with his name beside them, are not who he is... He is loving, caring, funny, smart, eager to learn, polite and pretty darn cute (if you ask me)! I would never change anything about him, he has been such a blessing to so many! We are excited to see what the future brings for him and just how far he can go to prove all those that have said "he can't", "he won't", "he'll never"...wrong!