Does this hurt?

Does your head hurt? Does you tummy hurt? Does it hurt when you swallow? What’s the matter?

These are all the regular questions you ask your little one when he’s not feeling well. Even the smallest child can answer these questions. Back and forth questions and answers and answers are so important when trying to diagnose health issues with your child.

We’ve been trying to diagnose seizure activity in our little girl for the past three years. Our little girl, Allie, is adopted. Biologically, she’s our granddaughter, the daughter of my daughter. At ten months of age, she was shaken and squeezed so severely that she stopped breathing (not by our daughter, in case you were wondering). Paramedics “bagged” her, and she was rushed to a nearby hospital where she was put on a breathing machine. She remained in a coma for ten days. After a week, while still in a coma, she started breathing on her own and seemed like she was on her way to recovery. But when she came out of the coma, it became evident that she had severe brain damage and is a quadriplegic as a result. Additionally, due to lack of oxygen to her brain, she has cerebral palsy.

She can’t walk or eat or go to the bathroom. She can’t talk. She can’t tell us what’s the matter.

Allie began having seizures when she was about three years old. Maybe earlier. She had one seizure a month that lasted about a minute. It’s the longest minute of your life.

We’ve had her on at least six different medicines and we haven’t been able to manage them. In fact, her seizures now, three years later, happen about every other night. Plus one of the medicines caused damage to her stomach.

Last week, we were in the hospital having a video EEG. The test lasted 48 hours. The goal was to capture a seizure event on video while monitoring brain activity. This will help our doctor determine whether seizures are epileptic or not.

Allie had a seizure our second night in the hospital. The EEG showed brain activity associated with the seizure. The conclusion: the seizures are epileptic events.

So what does this mean? Well, we continue to try different medicines to manage seizure activity. Extended epileptic seizures can cause more brain damage and even death. Determining the kind of seizures Allie is having is both terrifying and tremendously helpful at the same time. It gives us a way to focus on a plan of attack.

Please don’t feel sorry for us. Allie fills our lives with joy and meaningful purpose. Allie is a very happy little kid.

Pray for Allie and for our doctor. We need wisdom and Allie needs to have fewer seizures. And, if you have the faith for it, pray that Allie will be completely healed. Pray for that even if you don’t have the faith for it. Who knows what God will do with the little bit of faith you do have.

Watching some Disney on the iPad

Sunday morning walk

These are a couple of shots of Allie in the swing she hasn’t visited much since we’ve been back on the school schedule. Our morning walks during the summer were fun for the most part, but Allie was also having serious gastrointestinal bouts of pain that took a lot of the fun out of walking through the neighborhood. But a new medicine being added and another medicine being dropped from our daily routine has brought relief and is allowing things to heal up. The result: plenty of extra smiles.

Allie and Momma playing

These girls are having way too much fun.

Summer Pictures

This is where Allie hangs out when we're home which is pretty much always. She loves to have fun and laugh and fill my heart with love until it explodes.

The most amazing smile ever. Perpetually toothless cute-fulness.

Over the summer, we walked a two mile loop every morning and ended with a ride on the swing. This is what we do.

I don't have anything to say about this picture. Allie uses cuteness like a tazer.

My lady kissing my baby.

While strolling through the park this morning

Allie and I are home without the Charming and Beautiful Susan this weekend. Our routine on mornings that we're home alone is to eat breakfast, then walk to the park and swing awhile, and then walk over to Publix to pick up groceries needed for the day.

Our city is under a boil water order until Monday since they found fecal matter in one of our county's wells causing me to toss the pot of coffee brewed automatically before I got out of bed this morning.

Let me get back on track. So Allie and I walked to the park. I put her in the swing and noticed a hot air balloon overhead. I thought it would be cool to frame it in a shot of Allie.

This takes a bit of coordination when your pushing the swing with one hand and trying to keep your iPhone steady with the other. So I got a few shots and noticed that this balloon was traveling at an unusual angle. It was coming at us!

The balloon had some kind of malfunction and had to land in the park about a hundred yards from the swing set. That drew quite a crowd from the neighborhood.

Check out the video I shot. I hope my shaky hand doesn't nauseate you. I was pushing the swing and shooting in the first video and holding Allie and shooting the other. All from my iPhone.

Vacation Days

I'm home the rest of the week taking a couple of vacation days since Allie's off this week from school. We got out of the house early this morning for recreation and father/daughter time.

Here are some shots of our morning. We walked a little more than a mile, we played on the swings, and then we came home to play in the stander.

You'll notice Allie is sporting some new braces. This is her third pair. We're amazed every time she gets a new pair of these. This is her fourth set. Each set is bigger than the last.

Sunday Morning Swing

Allie has had a snot nose the past couple of days so we decided to stay home this morning from church. She wasn't too sick to not play, do we walked a quarter mile to the park to play on the swing.

On the way to the park, we chatted up Beezy the retired mounted policeman. Beezy became our friend the day he spotted Allie and I walking in front of his house and rushed out to give Allie a giant teddy bear. This is the perfect way to gain us as friends.

When we got home, we jumped online to catch the church service we were missing. Allie loves to listen to the music from church. After that, we took a nap. Allie's sleeping now.

My girls

This is part of the new routine around our house; Allie standing in this contraption. Daily she stands in a piece of equipment like this to help strengthen her legs and hip joints.
Here’s some school progress news: She knows the letter “A” and identifies it through speech. She also recognizes her name and can pick her picture out of a line up. We are so grateful for her teachers and the staff at Bright Horizons School in Pompano Beach. They see clues and cues and potential we’ve never picked up on. I thank God for their experience and passion for identifying and bringing out the best in Allie.

Charity is living back at home. This is so huge for us. She has been an incredible help around the house and with Allie. You don’t even know. In the picture above, Charity is putting on a show at SPoT Coffee in Delray Beach. She brought in a crowd that filled the store and the sidewalk outside. The crowd was energized by her original songs, folk-punk vibe, and beauty.
She hit the ground running. In a month she’s gotten herself a job, a car, and several invitations to play in venues around Palm Beach County. Her talent and work ethic are not a passing fad; they’re character traits that run deep.
My kids bless me. Can you tell?