The question of prognosis invariably is one of the first things a newly diagnosed family considers. It is difficult to hear there is a complication with a fetal brain. The unknowns are intense and agonizing. Getting caught up in the what-ifs can be all-consuming.
Somewhere around the 27th week of gestation, we were unable to accurately measure the ventricles in Parker’s brain. Ultrasound after ultrasound, we watched the ventricles increase exponentially. With each Perinatology visit, we would sit white knuckled in the waiting area praying for a ventricle stabilization or a decrease. With each visit, we watched Parker’s fluid increase, and her brain compressed until it was a fine sliver.
It was at that time that I felt peace. I know it sounds completely absurd. But, it is a fact. I realized there was very little I could control. I was unable to stop the increasing head circumference. I was unable to stop the fluid. But, I could control how I reacted to the terrible situation. I could relish in the fact I was pregnant. Many families struggle with infertility. However, the miracle of a child was growing inside me. That fact should translate into joy and celebration. The worry and fear lifted.
This brings me back to prognosis. Hindsight is a wonderful thing. While I had abandoned the anguish, I wanted to prepare. The ultimate outcome of a person diagnosed with congenital hydrocephalus varies wildly. I have likened our children to snowflakes. Each are very beautiful. And, every “snowflake” is unique and precious. I have yet to find two children who have matching conditions with a matching outcome. Hydrocephalus comes with its own complicated web of intricacies. There is no way to predict what may become a challenge with one child and not with another.
Appreciating our snowflakes for their exceptional gifts is of the utmost importance. My goal is to strive to never let a moment pass that I’m not thankful for the wonderful child I have been given. She is truly my blessing.
It’s hard to articulate how much one little girl can change your world. I wonder what would have happened if Parker had not been diagnosed with Hydrocephalus? The diagnosis doesn’t define her, but it has definitely made our path a different one. I’m fiercely passionate about Parker and all of her Hydro buddies. We have met a lot of awesome people along this journey. While I would take her pain away in a heartbeat, I have to think Hydro was brought into our lives for a reason.
Yesterday was Parker’s 5th Birthday. It brings tears to my eyes to think of how much love I have for that little girl. You are my sunshine, Parker Elizabeth, when skies are grey.
The Summer has been rolling along way too fast. I can’t believe it’s already August and Parker will soon be back in school. We decided it was best for her to take another year in Pre-K to fine tune her fine motor skills and gain some maturity. Last year was a good year for her to gain new skills but she was literally the youngest child in the entire school of 200 Pre-K children. I know this is something even parents of typical children who have August birthdays struggle with. And, my due date was actually Oct 15th, so she really wasn’t supposed to be here just yet.
Early in the semester 2012, we started Parker on an IEP for Occupational Therapy for assistance with fine motor skills. This has been the first time since she was one that she wasn’t developmentally with her peers. Her fine motor skills are delayed. Over the school year, we had seen minimal progress with her writing/drawing specifically. She did improve with cutting with scissors. But, I’m so eager for her to learn how to write her name, which is a skill that should be mastered by the end of Pre-K.
Parker has little interest in drawing. I’m not sure if its because she isn’t very good at it or why. But, this summer she has had one on one OT at Special Care and I love the results! In just several weeks, she drew this
I’ve never seen her draw a figure that actually looks like a person.
I’m hopeful this momentum continues into the school year.
We had a family vacation planned to Breckenridge this week. Last Friday, Parker became ill with a bug she picked up at daycare. It became obvious the illness she had was contagious and she wouldn’t be able to travel :-(. Sadly, we cancelled our tickets and got antibiotics.
By Monday she was feeling better and was no longer contagious. Since the rest of our family was in Colorado, I felt it was a good time to take a little road trip to Dallas and visit The American Girl store. So, on Tuesday morning, I surprised Parker and packed up our car.
Parker loved the store and we probably could have spent all day there. We took a long time picking out her doll and have a wish list full of wanted accessories and clothes.
We also met one of our favorite Hydro families, the Hannons and their sister Staci for dinner at Uncle Julio’s. It was wonderful to see them and spend time with our buddies on short notice.
So, what was a sour and sad family trip wound up with a sunny side.