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Hello! My name is Emily and this is my son, Cooper.
Our journey with 22q began when Cooper was just 2 weeks old. When I was pregnant with him, ultrasounds showed VSDs (holes in his heart), only 1 functioning kidney, and a 2 vessel (instead of 3) chord. I was given the option to do amniocentesis to discover why these issues were presenting themselves, or I could wait until Cooper was born and have cord blood sent to the lab to perform genetic testing. After weighing out the pros and cons, his father and I decided to wait. When Cooper was 2 weeks old, I got the call from his pediatrician to inform me that his test results were back and that he had something called DiGeorge Syndrome. Never hearing of this before, I asked what exactly that meant. I was told by the pediatrician that it was something she had never heard of herself and that I would have to do a Google search to find out more about it.
Hop, skip and jump through time, after switching pediatricians and having appointments with the amazing specialists at C.S. Mott Children’s Hospital, we now know that Cooper has 22q, formally known as DiGeorge Syndrome (among many other names).
The syndrome has caused VSD, only 1 functioning kidney, low immune system, low muscle tone, aspiration, low calcium levels, speech, gross and fine motor delays. I was told not to expect him to walk or even talk as quickly as other kids, and each milestone reached would be a blessing. Cooper has been followed by Genetics, Cardiology, Nephrology, Endocrinology, Ophthalmology, ENT, and Immunology. He has received Physical Therapy and Occupational therapy since about 3 months of age, adding Speech Therapy into the mix about a year later. We are about to begin our new journey with ABA therapy very soon.
Medically speaking, we have been more fortunate than some, but have had our fair share of hospital visits. When Cooper was 1 month old, he was hospitalized for RSV and Pneumonia. We stayed in PICU for 3 weeks before being discharged. He had his first surgery (bilateral hernia) at 4 months old, and had his first (and only, praise God) seizure at around, 2 years old. We find ourselves in ER whenever he gets the flu due to the increased risk of dehydration with only having 1 kidney. Today, at almost 4 years old, Cooper no longer aspirates when eating and drinking, the holes in his heart have closed, he no longer needs to take daily calcium supplements, he is signing AND speaking, he knows colors, numbers and letters, he runs, plays and laughs. His favorite thing in the world is music, I’m convinced he can keep a beat better than some adults. He gets excited about the littlest things and his entire body lights up with joy as his little arms wave in the air from excitement. He is full of love. He is everything right in this world.
God has watched out for him every step of the way, and has opened doors for so many opportunities for Cooper to be able to learn, grow, and be successful. Having my special 22qtie has opened my eyes and strengthened my heart. I see the world much differently than I did before having him. I watch in awe as my son fights his way through life, beating every odd. All while having a huge smile on his face that is almost always accompanied by the best belly laugh you will ever hear. God knew what He was doing when he created Cooper, he has been a light to so many even at the young age of 4.
I am thankful that our life isn’t “normal.” - We’ve seen, learned, and done so many things.
I am thankful that Cooper thinks differently than others. – He has taught me new ways to have fun and live life.
I am thankful for the appointments and therapies. – We have made so many “doctor friends” and explored huge “doctor houses” (as Cooper calls them)
I am thankful that he is surrounded by so many people who love and care for him so deeply.
Everything Cooper does, he does it big and I am so unbelievably proud of him. I’m so blessed and thankful for the world he has shown me.
To my fellow parents of 22qties, we’ve got this! This journey can be overwhelming and discouraging at times, but always remember that God has pulled us through 100% of the times we thought we wouldn’t make it. Our children will hit every milestone exactly when they are supposed to, not according to a chart or statistics. And as much as we teach them, they will teach us, and everyone around us, so much more.