Frankie and I flew to Florida to visit and relax at the beach with both my sisters, Cici & Carissa and their families. After our first day on the sand walking bare foot, Frankie was screaming and telling me her foot hurt...not her right one,the stronger one, but her left. Mimi (Aunt Cari) thought it was a muscle cramp in her foot so we had her shove down a banana and drink lots of water. The pain subsided after a while so we opted to keep her orthotics on while on the beach. NOT fun for most kids, but Frankie was OK with it.
Frankie & MIMI
Frankie & Aunt Cici
The rest of the vacation couldn't have been more fun. Frankie had a blast with her cousins, Zach, Alexis and Jaqueline. We went ghost crab hunting and did a lot of walking on the beach. Frankie waves to EVERYONE and says hi as she is strolling down the coast line. We were calling her the mayor of Crystal Beach!
She even stopped one gentleman on his beach chair and said, "Are you drinking apple juice?" He nodded yes with a half smile. Uh, it was a corona in a bottle. We're not supposed to have bottles on the beach but the mayor didn't care.
When we flew back from Florida this past week on August 11th, Mark picked us up from the airport. Frankie was so excited to be home. We got in around 4pm and headed to a local restaurant. Frankie seemed tired in the car so she took a nap in her car seat. I decided to give her more time to nap before we ate so I asked Mark to drop me off at Target to get a few items as she slept. As I walked out of the store, Mark said, "I think you need to check on her. She's not answering me." As I opened the back door I saw her eyes rolled to the side. "FRANKIE!!!" I yelled. "FRANKIE!!! Can you hear me?" She didn't respond. Her eyes were open and turned to the right. I knew in my mind that it was a seizure but my heart didn't want to believe it.I told Mark to drive to the ER....He knew of a clinic about 20 minutes away. Meanwhile, I videotaped her seizure with my phone and kept trying to get her attention. I remembered to leave her alone if it is a focal seizure so that's what I tried to do...but I kept attempting to get her attention. She was unresponsive.I was panicked but composed.
We got to the ER and they quickly gave Frankie Ativan. She quickly came out of the seizure but fell asleep. They did a cat scan and kept her on oxygen. After the scan, the Dr said..."I think you need to see this."
Quick background on brain scans: As some of you know, Mark and I had decided against an MRI for Frankie in the past. I knew she had some sort of lesion on the left side of her brain that was causing the right side to be not as strong. Since she was 7 months old, we have been treating the symptoms. She has been in PT and OT since then and has seen many specialists...from Physiatrists to Neurologists. We didn't need the MRI to give us a crystal ball or to prove what we were living with. We didn't want to put her through anesthesia unless there was a dire need.
So,when I saw the cat scan, I wanted to pass out. Frankie had a huge cyst, covering 2/3 of the left side of her brain. The Dr used the word, "miraculous" to describe Franke's ability to walk, talk, etc...He said if he saw an adult with the same MRI,he or she probably wouldn't be able to move their right side or talk.
That same Dr. said she it appeared she had an arachnoid cyst. Well, Ms. McGoogle looked it up and had my sister do the research on it. Meanwhile, we were being transported via ambulance to ICU at Children's Hospital in Dallas.I was able to ride with Frankie and she was slowly coming out of her sedation. The super cool ambulance was made specifically for children. I was able to choose her favorite show out of a library for her to watch on their flat screen tv. I chose good ol' Curious George. I'm sure she enjoyed it.
After being in the hospital for 3 days, we learned a lot by the MRI and EEG of the brain. The Neurosurgeon concluded that Frankie has static encephalopathy. Huge second word. The word static, when I first heard it, made me feel much better. The cyst will not get bigger AND...she was born with it. The Neuro team concluded that she had a stroke in utero. This is what I suspected all along. I just didn't realize the cyst was so HUGE! Thank God for neuroplasticity. Frankie's right side of the brain and part of the left has been compensating for the damaged area.The brain CAN rewire itself! Early intervention including therapy is to thank for this. And God.
Here's a visit from Nana during the EEG.
We are now out of the hospital, but have to deal with possible seizures. Frankie is on a medicine now twice daily. I have to thank Uncle Matt, our first visitor for putting the first smile on her face! I also thank Nana and Aunt Kristin for coming to visit us. Ashley, thank you for offering to come and my parents for sending her the biggest Olaf I have ever seen! To my entire family and friends, I thank you for your prayers. I felt them! We didn't want to tell many people that we were in the hospital because we knew everything was going to be OK. With that said, I'm extremely confident that her seizures can be managed by these new meds and she will continue to amaze us everyday. We start school in 2 weeks and will be going to private PT, OT and ST weekly. I see Ballet in the near future too!I'm looking forward to getting into a routine, no doubt.
