Dean was born 6-weeks premature due to a variety of health problems with both him and me.
He weighed 4.2 lbs and was immediately taken to the NICU. Since then, we have had three multi-day PICU (Pediatric ICU) stays, countless doctor visits and tests.
On this page, I will discuss the challenges we have faced with Dean’s health, including his Isolated Hemihyperplasia, which is an overgrowth syndrome, and his asthma.
Our hope is to hear other stories and learn tips and tricks to be the best parents we can for our little bundles of joy.
Dean was first diagnosed with R.A.D. (Reactive Airway Disease) and later diagnosed with childhood asthma after two PICU visits for respiratory distress. Because he doesn’t wheeze, which is a clear sign of asthma, there was a lot of back-and-forth about what was wrong with him.
My hope for this page is to create a safe space for people to share their stories and give each other support and advice. I hope to also provide resources to make this scary time a little easier.
Having a child who struggles to breathe can be paralyzing, but I feel like if we are all armed with the right tools, we can do anything.
ISOLATED HEMIHYPERPLASIA (OVERGROWTH SYNDROME)
Dean was born with two toes that are larger than the rest. When he was in the NICU, the nurses asked who had the long toes and my husband likes to say it was me. We didn’t think much of it until his 6-month check up when his pediatrician brought it up.
After a lot of different doctors and genetic tests, Dean has been put into the umbrella category of overgrowth syndromes. Isolated hemihyperplasia is an abnormality of cell growth leading to asymmetric overgrowth of one or more parts of the body. Dean’s is in his right leg and foot.
We are Do It Yourself parents who advocate for our children!
I want to create a community where we can talk about the heartbreak, fear, strength, and love we experience for our children.
Please share your story and ask questions. We can learn the most from each other.
I remember the first time Dean got sick during the night and Graham was out of town. I called my cousin, and she came over to calm me down and told me, “It is always worst at night. Everything will look better in the morning.” That could not be truer. Last night was a great example. […]
This flu season is shaping up to be one of the worst this country has seen in a long time. I was so worried about Dean getting the flu because of all of his asthma, but when he actually got it he handled it much better than expected. I think this was because of three […]
When to go to the ER
Don’t know when to take your child to the hospital? Here are 5 tips to help make that tough decision.
Don’t know when to take your toddler to the hospital for respiratory distress? Here are 5 tips to help make that tough decision. Watch his belly. Seems easy enough. The key is to know what his breathing looks like normally, so you have something to compare it too. I took a video of good breathing […]
It happened again. This time because of the fear of the flu. And of course, It has to be the worst flu in like forever. It’s always the struggle of knowing when to go to the hospital and when not to. You don’t want to go to soon and jump the gun, but you also […]