1st Impressions

We are always told to make a good first impression. Everywhere we look, we are bombarded with images of beautiful people with beautiful clothes, jewelry, houses and cars. We even see pictures of the perfect families. The well dressed parents with their model looking children. That’s what we assume our live will look like when we’re a 25 year old.

I had seen families with special needs children in them. I grew up across the street from a school for children with special needs. I played with them all the time. When the school closed, they were integrated into my school but I never stopped to think what it took to raise or to provide medical care for these wonderful children.

Justice has so many aspects to her personality. Like all of us, she’s not just one way or in one mood everyday all day. She is extremely patriotic. During the Olympics’ she will cheer for the USA like no one else and has about 10 U.S. flags hanging in her bedroom. She’s also very witty, love to talk on the phone and listen to Kenny Chesney. She is kind to everyone except her brother and tends to be a little shy when people start treating her as if she is different. She also will cuss like a sailor, which at this point we at least figure she’s not cussing like a Marine. Just kidding, but she does tend to try out new words on occasion.

With this beautiful personality also comes a wealth of medical conditions including 31 surgeries. I’ll give a brief overview here but over time will go more into depth on them.

Justice’s main underline condition is called Noonan Syndrome. It’s a genetic syndrome that can affect a whole range of different systems of the body depending on the person. Science is improving but there still isn’t a really good test to use so the doctor basically looks at your child and their medical problems and sees if they fit the syndrome. That’s the simplest way I can explain it. Now each child with Noonan’s is different so this is what Justice is dealing with: 1Genetics - the basic “look” of Noonan’s 2. Cardiology (Heart)- Pulmonary valve thickening, Pulmonary stenosis, Bicuspid Aortic valve, Aortic stenosis, Heart Murmur (Stenosis means tightening) 3.Hematology ( Blood)- She was born with a Leukemoid Reaction or really high white blood cell count so she is watch for developing Leukemia 4. Endocrine- (Endocrine is like your glands and hormones) she uses this doctor for her Grow Hormone shots and in the past for Refractory Hypocalcemia or calcium levels 5.Gastroenterology (Digestive)- Non-Rotation of small bowl, feeding intolerance, dis-motility, GERD, Constipation, Bladder and Bowel Incontinence, Diarrhea, Gastroenteritis, Weight loss, tube feeding, wretching, 6. Neurology (Brain and Spinal Cord)- Chiari I Malformation, Tethered Spinal Cord, Headaches, Neck Pain 7. Orthopedics (Spine)- Scoliosis, Kyphosis, backbrace, 8. Other- Hearing loss, glasses, ear infections, sinus infections

Well, that is pretty much the jest of it. Some of these things affect us every day, some have been “corrected” but we have to deal with the side effects of the corrections. Some, I hardly think about until the doctor’s office calls for her annual check-up or I have to repeat it a hundred times to the hospital staff. All of this is part of Justice and helps make her who she is but does not complete her. I just thought it would be helpful for my readers to have somewhat of an idea of kind of things that will be coming up in future posts.