Where to begin, where to begin? Well, I guess it all began soon after Natalie was born three and a half (now almost four) years ago. Bleeding in her brain almost took her life---but she survived! Two weeks later, a battle against a severe case of pneumonia had Natalie's fragile body teetering between life and death---but once again, she survived! That second medical event is the one most doctors would agree did the lion's share of damage to Natalie's brain.
As you well know, she has cerebral palsy---but more importantly, she has frequent seizures. She's been struggling with these (we figure) since soon after she arrived home from the hospital. At first, we didn't know what was wrong with her. She was angry all the time---we spent hours bouncing her, swinging her, anything to make her happy. Needless to say, after a rollercoaster ride in the NICU, we were looking forward to bringing her home, and were disappointed that life was often just as difficult at home as it was in the hospital.
We were frustrated, tired, and at our wits' end. Most of all, we were sad for Natalie that she couldn't be happy! We also noticed that Natalie seemed to be making less and less eye contact. We have photo documentation of how she used to look at us. Grandpa had also taught her how to smack her lips, but the ability to do that seemed to be gone.
Then one day my sister-in-law Brittany mentioned something about petit mal seizures. She noticed (as did we) that Natalie would "space out" for periods of time. We had an EEG performed on Natalie, which confirmed that she was having seizures, although not petit mal seizures...instead, it was something called infantile spasm seizures. It was time to take Natalie to a neurologist, and that's when we met Dr. Samira El-Zind at MeritCare in Fargo.
Natalie was put on a medication called Keppra. It was like the magic drug. Natalie's demeanor changed overnight. She was happy again. At times, we could even get her to laugh a bit. We were so happy because we thought this was the answer to her problems. Unfortunately, the brain is always changing, and soon, Natalie's seizure activity would change.
The one thing Natalie had never done up until last summer was sleep through the night. I had gotten used to the fact that she would always wake up two to three times a night. I always figured that it was just a side effect of her inactivity during the day. Then, we started to notice that after naps, Natalie would wake up and spend the next half hour making jerky movements.
We packed up the van and made another trip to Fargo for a 24-hour video EEG. This time, we found that she suffered from something called "continuous spike wave of sleep." What this meant was that she was seizuring continually during her sleep, although her body wasn't moving. After too many seizures, her body would jolt her awake and she would suffer through the jerking motion. Eventually the seizures would calm down and she would go back to sleep. That's when we started her on clonazepam. The first night she had it, she slept so well that her daddy woke her up---he was worried that something was wrong! The next night, she slept through the night! It was INCREDIBLE! Natalie was getting a full night of good sleep---and so were we.
But once again, we feel like Natalie's seizures are getting worse. It's just a general sense this time that things are getting worse. So now, even though we really like Dr. El-Zind, we are trying something different. In two weeks, we will make a trip to Mayo Clinic, where we'll see what a new team of doctors has to say about Natalie's brain. What we really want is a second opinion...a fresh view of what's going on. We don't know what the future holds for Miss Natalie, but we want to make sure we're doing everything we can to make sure her brain is able to function as well as it can so she can learn and grow to be the girl she is supposed to be. She's scheduled for at least three days of appointments, but it may end up being more. We are really looking forward to this and hope it will be the start of something really good for Natalie. Of course, I will keep you up-to-date while we're on the trip. If you can, please keep Natalie in your prayers.
Please pray that:
1. The doctors are able to understand what is going on Natalie's brain.
2. Any solution to Natalie's seizures will be safe for her.
3. Natalie will be comfortable and happy during the testing---and that she doesn't get scared!
4. We have a safe trip!
5. This will be a productive trip for Natalie.
Thank you so much. We certainly know how powerful prayer is in our lives. We appreciate every single one!
Below are some pictures of Natalie. The last picture was taken at the zoo last week---next to the bears! Sorry I was so long-winded this time. It's hard to condense her seizure history into a short blog!
What we did find was a resort just one lake away--on Eagle Lake, called Eagle Beach Resort. It had all the charm of Sunset Lodge, minus the years of memories. It even had a pool! So, ready to make new memories, we headed out at the end of June. It surely wasn't the same, but a week at the lake is all about spending time with family and enjoying life away from the hustle and bustle of our everyday world. It's so refreshing---and best of all, it's Natalie's favorite place to be!! It was a week full of fun---and here are a few pictures (of the thousands taken). :)
Natalie loves to sit on the beach and listen to all of the "lake sounds." We love listening for loons!
A ride in the boat---Natalie loves to have the wind in her face! She lays her head back and smiles. It's so sweet!
Daddy is a great water skiier. He only does it for one week a year, but he always does really well!
Natalie loves to have Grandpa all to herself!
Natalie spent some time in the pool. It was great having a pool, because on the cooler days, it was nice and hot at the pool. The kids loved it!
Feeding the fishies!