Here Today, Gone Tomorrow! Our Whirlwind Roadtrip to Cincinnati

Well, this week took a turn I didn't expect. But I'm beginning to learn that with Miss Brooklyn, I really should expect the unexpected. Her pediatrician and therapists have becoming increasingly more concerned about her atypical development and continued seizures. So, last week they referred her to Cincinnati Children's Hospital. It is a long drive from our hometown, but it has won multiple awards for being the best, so we were in agreement that a road trip might just be necessary. When they began to process her paperwork, they said she would most likely be seen in August, or maybe even the fall.

Then Monday rolled around, and I called to confirm they had received some paperwork I had faxed over. They said they did, and then said... "Hey... we've had a cancellation for tomorrow... would you like that appointment?" Tomorrow? Tomorrow?! Tomorrow! So began a whirlwind of travel arrangements, requesting PTO, childcare arrangements, packing, etc. And within two hours, we were off!

Can you believe this girl would not sleep in the car in spite of me listening to George Bush's Decision Points on audio-cd for school? :) Eight long hours later (thank you, construction workers for slowing traffic for miles when you weren't even working) we arrived in Cincinnati and checked into our hotel at 11pm.

Someone may or may not have been relieved to be out of the car and able to move.

We got a few hours of sleep, and then headed to the hospital.

Brooklyn underwent a two-hour assessment in the Department of Developmental and Behavioral Pediatrics. She saw a nurse, social worker, physical therapist, developmental pediatrician, and a nurse practitioner. They ran a whole battery of tests on her, which she really thought was playtime. They were awesome with her, and the facilities were incredible. They even had volunteers to play with her while we spoke with doctors and listened to instructions.

Then the team met and wrote their report and made decisions about treatment options. They came back and explained several things to us. Some of it we already knew, and some of it was new discovery. They explained that Brooklyn has extensive developmental delays. She is about six months behind in speech and language development, and four months behind in social and emotional development. She is about three months behind cognitively. She also has a slight delay in fine motor skills. She was, however, right on target for her gross motor skills.

They also told us that Brooklyn's head is atypically large for her body size. While her height and weight are 75% for her age, her head is almost 110%. This is called macrocephaly. This is a pretty big red flag. It can mean that something abnormal is going on in her brain, like a growth or too much fluid, or something like that. It can also be benign, though.

They also noticed her low muscle tone and balance issues, and would like to continue to keep an eye on that.

Their final concern was her seizures. She continues to experience those quite often, and they want to run more tests to try to ascertain the cause. If they rule out all structural causes, they will most likely place her on anti-seizure meds to help get those under control.

They asked us to come back up and stay for 3-4 days so that they can run extensive tests and get her in to see multiple specialists. They are going to do an MRI under general anesthesia, and also measure the fluid levels in the brain while they are doing that. They also want to do a prolonged EEG to see if they can capture images of seizure activity. They want her to see a neurologist and a speech pathologist.

We loaded back into the car and began the long journey home. After being gone 32 hours, and spending 15 of those in the car, we arrived home very tired. We are so thankful that Cinci was able to see our girl though and that they share our concerns. Most of all, we are grateful for their commitment to get answers.

Special thanks for our church family and friends for your support, to Mimi for entertaining Brookie in the backseat so that I could drive, to Grandad for a free hotel room, to Mariott for setting up a pack-n-play for us and having everything ready to go when we arrived, to Mattie and the awesome volunteers at the hospital for entertaining baby B, to Gram-B and Miss Catherine for keeping Savannah, and to the great team of doctors and staff there!