The Perfect Storm

Well, after a year and a half of being seizure free, it happened. IT. The thing we HATE. The thing I fear most. The thing that is unpredictable and fierce.

Our Thanksgiving break starting out great tho. We drove straight to McAllen and stayed at my parents' home. Frankie was able to see Frozen 2 with her cousin, walk my parent's dog daily without HIM pulling HER, get loads of hugs & kisses from her grandparents, and load up on the best tex-mex food around!

After a few days in McAllen, we were enjoying ourselves at the ranch with family. Rides on the Polaris, fishing, dancing while the boys went hunting for hogs and deer. Mark, Frankie and I had to sleep together on a king size bed. No problem. At 4am, two nights before Thanksgiving day, Mark woke up to hunt. Frankie and I stayed in bed. After snoozing a while longer (because I think that's what I do all night sometimes)..all of a sudden, I could feel the bed shake...like every 8 seconds. Yes, I was counting the seconds in-between! My first thought was that Frankie was having hiccups. But why would anyone get hiccups in the middle of their sleep cycle?
After a minute or two, I started worrying even more. My eyes were wide open and my mind was going wild... but I didn't want to wake her up to ask her if she was ok. She then sat up in bed. I quickly turned on the lamp. I asked, "Are you OK?" She just stared. My next thought was to check her pants. Sure enough, she had an accident. That's when I panicked. This was our indicator that IT came back!

I quickly woke my sister up in the next room and my nephew who was sleeping in another room. I couldn't find my phone OR the rescue med. I told my nephew to text Mark, "9-11, come back to the barn." Meanwhile, I was sitting next to Frankie, trying to act calm asking her questions and bossing my sister around to look for my phone. Frankie was  responding to me.....without saying words, just nodding yes and no. So, she was coherent. I found the rescue med but didn't give it to her thinking the seizure was over. She was sitting up tho, rocking back and forth and smacking her lips. Mark arrived and I grabbed my phone my sister found to take a video of Frankie since our neurologist likes to see these episodes.
After cleaning her up, we wrapped Frankie in blankets and she fell back asleep for a couple of hours. When she woke up, she had zero recollection as to what had happened. She was acting totally fine after that although at first she said her head felt cold.  I couldn't help but dwell on the question..what happened that night and WHY???

I called our neurologist first thing the next morning. Thank GOD she was in her clinic that day since it was the day before Thanksgiving. She upped Frankie's seizure med at night...thank goodness we had wiggle room to increase the med since she has gained weight since her last dosage adjustment. I told Dr Jan about the video and she told me I should have given Frankie the rescue med. It seemed to her that she was still seizing, even though she was responding to me. These are partial-focal seizures. The initial one was a myoclonic seizure. The first of it's kind for us!! Myoclonic seizures can start as hiccups or other involuntary jerking of the body.

Frankie continued to have a blast at the ranch the next few days. I had a great time too, despite having PTSD. And yes, I really think that's what I have. I'm not a war veteran or someone that was in a tragic accident; but it's time for me to accept that I struggle with worry and anxiety over what can be, life threatening episodes. I tried so hard to not think about the seizure and the fact that we were far away from a hospital. I prayed like crazy and well....it worked.
I can't believe my entire family was able to get together for a photo, too!

Our drive home from South Texas was 9 hours. During that drive Frankie got the hiccups. Yup. I said to Mark..."Omg...Frankie has the hiccups!!" He seemed unphased..perhaps not to make my anxiety even worse. She was singing while she had the hiccups and I was googling the heck out of "what causes hiccups." I told myself it was the Fanta drink she begged us for that caused it. (Carbonated drinks can cause hiccups.) Who knows what the culprit was...but my anxiety was real and luckily, the hiccups subsided. We finally made it HOME mentally and physically in tact.

Now that we are settled back, we wait a few more days before we see Dr Jan, our neuro. I have notified the school about IT and the new symptoms to look out for. We even had an ARD meeting to discuss this, as well as other concerns we had regarding Frankie academically. Thankfully, the meeting went better than expected.

We went ahead with our appointment to see an orthodontist to correct Frankie's front teeth. We pulled the trigger pretty quickly and got her braces the day after our second consultation! I forgot how bad the pain is afterwards. After all, I was Laura Ingalls' doppleganger with a huge overbite at her age and I had braces for many years because of it. I don't miss the days after my braces were tightened...OUCH!!
Soft foods for the next few days!




So now I'm left with the question...did the excitement of being at the ranch and Frankie's weight gain cause the perfect storm? We may never know. What I DO know is that my biggest Christmas wish is that IT is evicted and never comes back.

PEACE out!!

Hope Floats

Right out of college, I stayed in Austin and worked in property management. I was working at this really nice apartment complex...so nice that Gena Rowlands and Sandra Bullock were staying there while filming their movie, Hope Floats.

A couple of nights ago, the movie was on. It's one of my favorite movies of all time. There are so many nuggets to take away from it. At the very end, "Birdie" says this.....

Frankie's beginning was definitely scary for us. For the longest time, because she weighed only 3 pounds, I wondered if she would actually grow. Would she be able to walk? Talk? Thankfully, I waited to have the MRI of her brain don't until after her first seizure at 5 years old, despite the doctors telling us to get one. We were treating the symptoms, going to therapy a few times a week and seeing doctors routinely. We didn't need a crystal ball to tell us what to expect in the future and we didn't want to expose her to anesthesia when there wasn't a dire need. Had we decided to have the MRI of Frankie's brain when she was 6 months old, I don't think we would have pushed her as hard as we have. I may have thrown my hands up and listened to the docs that would have probably said, she would never walk or talk. 

Her cyst, for those of you that don't know, covers 2/3 of the left side of her brain. It's a freakin' miracle she has come this far. I owe that to our faith in HIM, neuroplasticity (the brain being able to rewire itself,) and all of our angels  including therapists, doctors and teachers, that have held our hands throughout this journey.

Let me fast forward to 3rd grade and being 9! So, Frankie needs braces soon-this time on her teeth. We have a few orthodontists we are consulting with. I will be honest...I was a little worried when we arrived to our first doctor's office after seeing that there were only 3 other patients signed up that day. I don't want to say much more about all that, but I'm doubtful we will move forward with that doctor. We have another consultation in two weeks...(good sign it took 3 weeks to get in!)

Today I sit here and Frankie has been home for 3 days now from school. It's not the flu, wasn't strep---but something viral. At least that's what they are telling us. Is it bad that I was secretly hoping for strep so we could get meds!!??

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I have to say I was pleasantly SHOCKED on Monday when I discovered this colorful bird after sitting in our pediatrician's room waiting for lab results. Up until recently, Frankie had a very hard time coloring in the lines. Now? She's coloring this? I showed this to Mark when he got home and he was in disbelief. We both were.

So, today we've been home ALL day. Thankfully, Frankie is in great spirits and we have major cabin fever...so much so that I took her to the mall earlier today. Yep. I sure did. She desperately needs shoes to go over her new orthotics before we fly down south this weekend. The Billy high tops we just bought her don't work because apparently they defeat the purpose in having hinged orthotics. The hinge part of the brace needs to be able to move and high tops restrict that so, we were on a mission to find low-top, wide, & CUTE sneakers..uv course!

I think we tried on 7-8 pairs of shoes.We began our treasure hunt at Nordstrom and ended up at Journey's. I could tell Frankie was tired after the 8th pair so we quickly headed home...that is, AFTER we found some shoes!! YES! Thank you, Converse! They might be leopard too. ;) Is leopard-on-leopard a fashion faux pas? Who cares but the struggle is real....finding shoes that fit and trying to get them on!!

HOPE definitely floats and lingers in our home! We are looking forward to seeing family& friends in South Texas soon. Wishing all of you a happy & healthy Thanksgiving!!

Confidence is the best outfit

Let's see, it's been a year since I posted. Life got in the way. Priorities shifted and I wanted to spend this time focusing on a new project of mine. I also wasn't sure I was going to keep this blog site or switch to another. My journaling has continued...without that, I think I would be lost.

Rather than backtrack a whole year, I'm going to jump in and shout, God is good!!! A few years ago, the thought of writing a book to give Frankie a voice entered my jumbled mind. So often, I would hear Frankie's peers ask questions about her condition and I struggled with how to answer them...with an appropriate delivery of course. How much should I tell them? What should I NOT tell them. This is when I knew I had to do this.

Fast forward to 6 months ago. A friend told me there was a publisher coming into town and was having a workshop for people that wanted to write a book. It was on a Saturday, so I could swing it with Mark's help to watch Frankie.
After the workshop, I spoke to the publisher and told him what my manuscript was about.....at this point, I wasn't ready to show it to him or anyone else for that matter. After a few weeks of completing it, it was time. I realized I had found the perfect publisher. Thomas Freiling was HIRED and I was FIRED up!!! Was this really happening?? Could this happen?? I SO badly wanted to get Frankie's story out there and this was my chance to do just that.

Rewind:A few years ago Frankie was gifted a beautiful painting on her birthday by a dear friend. The painting was of Frankie's favorite things...Corduroy, Moana, Candyland. It was placed in a shadow box and gifted to her--it has been one of our most cherished keepsakes. I would often stare at it in awe thinking about all the detail in it. The artist is obviously over-the-top talented....she happens to be  my dear friend's sister. All of a sudden, something clicked. I knew SHE would be the one I would ask to illustrate my book. The passion she had for Frankie was so apparent in her artwork and it was a no-brainer that she would be AMAZING. The next step would be to ask her if she would take on this project. It would definitely be a time-consuming job but one that I knew she could do.

So, I asked my dear friend if she would mention it to her sister before I picked up the phone to call her. Yup. I feared rejection....I was pleasantly surprised she would be interested. After a few conversations with her, it was a sealed deal---she would be the one to create masterpieces for Frankie's story.

Here we are...the bones of the book are done and the sketching is in progress! I'm really not sure what to expect in terms of book sales. The main reason I'm doing this is to help educate other children, even adults to recognize and accept children that are uniquely different. According to Dr. Phil (yes, I watch his show!) we all strive for acceptance above everything else in life...including love. I will admit I have re-occurring dreams about being excluded from outings with my friends that took place in junior high and high school. YES! That ugly feeling STICKS with ya. Exclusion and rejection will happen tho- it's inevitable; although people with challenges, whether mental or physical tend to struggle more, I think.
Oh, I how I wish we could bubble wrap all of our children and protect them from the pain that rejection will bring. We can certainly help educate them at home, and in our schools to help build their confidence so that they too can have GRIT and be over-the-top proud of who they are.


I close with this!

PSALM 139:13–14

For you created my inmost being;
    you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.