CTD

“Run” – Nathan

Greetings again friends! While I had a post all written about expectations for this week, I just felt like this topic weighed heavier on my heart, so away we go! Continue reading

Reid (6), Rhett (8), and Cora (4)

“Raising Reid” – Whitnie

They say it takes a village to raise a child. I believe that to be true. If left up to me alone, I’m not sure I’d survive the emotionally taxing roller coaster ride of parenting a special needs child. Reid was diagnosed with x-linked Creatine Transporter Deficiency at age 2-½ after searching rigorously for answers to his unexplained symptoms. Continue reading

“This Too Shall Pass” – Nathan

Hello again friends, thanks for taking the time to once again visit with our interesting family adventures. The past several weeks have been good for us, but it has definitely been a time of transition. As spring ebbs into summer our eighteen month old and two-and-a-half-year-old have found themselves the victims of long-running springtime colds. While the colds did bring with them a double trip to the emergency room for dangerous fevers, luckily the boys didn’t get admitted and after a few days of watching closely for seizures, everything seems to have calmed down. In addition to the usual changing of seasons and all the fun that goes with the warmer temperatures, we also feel blessed to have transitioned to some new in-home care providers that seem to be improving Eli’s care by leaps and bounds. Continue reading

“Sweet William” – Jessica

Hi, my name is Jessica and my son William, who just turned 5, has Creatine Transporter Deficiency (CTD). William was born in April 2011 and as first time parents, my husband Wayne and I were very excited!  Continue reading

“Our Salty & Sweet Life” – Nathan

Welcome to what I fully expect to be a long list of random ramblings, some of which will hopefully help someone along the way.

Let’s start with the obvious question of, what’s with the title of your blog? Well, that is indeed a good question! Unfortunately, it is going to take a minute to fully Continue reading

“A Mother’s Intuition and How One Family Never Gave Up” – Whitnie

Parents have a sixth sense about their children. Call it a hunch, a gut feeling or a Mother’s/Father’s intuition, but it is real. I think as parents we feel like we have a responsibility to society to be logical and methodical. We don’t like making assumptions based on a mere feeling, but instead want evidence to show proof and validation. Afterall, that’s what we’ve been taught. It is a terrifying thing to come to the realization that there might be something wrong with your child, but it’s even worse not being able to prove it. Continue reading

“The Parker Family” – Melissa

“There have been angels in my life….” This was written to me on a thank you note by the wife of a friend who passed away suddenly. For some reason, that quote always stuck with me. It meant even more to me when Will was little and his babysitter took me aside one day to tell me “something wasn’t right”. That was angel number 2. She was 73 at the time and had kept practically every child in our hometown. Everyone knew her and everyone trusted her. I was no exception. We trotted straight to the doctor, then to another doctor, then to another. Cerebral Palsy was the diagnosis. “Put him in physical therapy, occupational therapy and speech therapy,” the doctor said. Have a nice life Parker family. He didn’t say it, but I felt it. He was NOT angel number 3, and Will did NOT have CP. We switched doctors and over the next few years both she and I decided he had Will Parker Syndrome. Why not name it after him? She had no idea what was wrong. She became angel number 3. Continue reading

“Our Journey” – Kelly

When Trenton was born in New York, he weighed 7 lbs 2 ounces. Before we left the hospital, he dropped to 6lbs 12 ounces, by our first appointment 6lbs 9 ounces and stayed there. He was bottle fed and projectile vomited often. I took him to the pediatrician and they just kept informing me that baby spit up is normal. No matter how much I argued with them it was not just spit up, they didn’t begin to do anything until he finally projectile vomited on them. We were in and out of the doctors at least 2 times a week for approximately seven months. They just kept switching his formula. He got a GI scan and that came back normal. No one knew what to do but he was finally gaining weight so they just dropped it. Continue reading