Frankie for Mayor!!

Since I haven't posted anything here in a LONG time, I feel the need to catch up on time that's lapsed--But I won't do it. I will spare you!

I wanted to focus on the word inclusion and why I wrote my book. 

It's funny I used to think the word "inclusion" meant to simply be included in something.

Here's a more formal definition I found.

Inclusion is the practice or policy of providing equal access to opportunities and resources for people who might otherwise be excluded or marginalized, such as those who have physical or mental disabilities and members of other minority groups.

As a parent of a child with unique abilities, I've uncovered expanded definitions to simple words such as inclusion, acceptance and kindness. Eye-opening for sure!!!

I've also realized there are "no-no" words that should be avoided because they may cause some people to be offended or sensitive to. These include the words handicap and disabled. 

Just to let you know...if you've said these words around me, I haven't been offended! I never want my friends or family to feel like they need to walk on eggshells when we're talking to me; however, I will say again, these words may offend some. Unfortunately sometimes we don't learn this until we get put in our place! 

These last few years have been bitter-sweet. Thankfully, there have been more triumphs than downfalls. Very grateful for that. 

The downfalls are mostly my perception of let-downs and my view from a lens that's becoming more clear as Frankie treks into 5th grade. WAIT!! Did I just type that?? Not the word trek but 5th grade! omg!

The gap between Frankie and her peers academically is getting bigger...and so is my concern. Socially, we feel she is regressing. We have a lot of decisions to make soon regarding that. 

In what setting or environment can she thrive?  I wish someone could give me the answer and remedy to that! 

And so, I pray. 

And hope.

Going back to the word inclusion.

Many times I feel that Frankie is oblivious to being excluded in things since she doesn't verbalize her feelings often.  I shouldn't assume she's oblivious--I know her interactions (and non-interactions) with people affect her...and sink deep into her heart.  I try to nurture her and build her up as much as I can. At the same time, I know I can't keep her in a bubble to protect her from hurt and pain. 

I've witnessed firsthand Frankie being excluded on the playground, at parties, etc...It's heartbreaking. And I know it doesn't just happen to her. I think all kids have experienced rejection at some point in their lives---some much more than others. I know rejection can't be avoided indefinitely, but it can be noticed and addressed...especially when it's noticed by an adult.

How do you soothe a child, friend or family member that's been rejected? I'm certainly no expert. Teaching a child how to cope with the inevitable (rejection and fear) is an ongoing lesson for me. 

When I was a child, my parents wanted me to be involved! I was into cheerleading, girl scouts, gymnastics, ballet, piano--the list goes on! Because of this, I always felt the need and urge to be doing something. AND! I wanted to fit in. Thankfully, I was very fortunate and had a great group of friends; although I still feared rejection and wanted to be included in ALL THE THINGS. 

Um yea...that's me with the braids there!

I have to quote something from Dr. Phil here. 

"The number one fear that people have is rejection, and the number one need is acceptance."

I thought as humans, our number one need is love and I know my number one fear is death. I don't think Dr. Phil is God but I definitely find his quote true...at least in my world today. 

What is fear? I've been taught to "fear not!" 

It's impossible for me to not fear when I see a bobcat a few feet in front of me on my running trail! I'm definitely fearful before I wake up from nightmares where my teeth are crumbling and falling out... or the dreams where I don't know where my next classes are... These are subconscious things that obviously still haunt me. I can only imagine what thoughts are going through our kids' minds that will stay with them indefinitely. 

As parents and/or caregivers our hope is to eliminate fear and anxiety from our children's lives. 

Is this even do-able? 

Rewinding a bit!

When she was a baby and toddler, I made it a point to surround Frankie with neuro-typical kids as well as kids with physical and mental challenges.

I tried so hard  to shield her from the inevitable...rejection. 

There's MY ignorance- I quickly learned I can't shield her from this. 

When they're this little, in their eyes, everyone is the same!!

As Frankie got older, I found myself having to explain her condition to her peers. They started asking questions. GREAT questions like... "Why does Frankie wear those things on her feet? Why doesn't she ever say hi?" 

That's when I knew I had I to give Frankie (and other children with unique abilities) a voice. My insides were screaming!! I could sense Frankie's were, too!  I wanted to tell her story--in the hopes of bringing more understanding about her condition and in a way her peers could grasp. 

Soon after, "This Girls' Got Grit" was born. 

Empathy is so hard to teach, but my hopes are to help educate children and even adults--to learn more about Cerebral Palsy and other conditions that may cause physical and mental challenges-and to be reminded that everyone has a story. We are ALL different! 

I'm hopeful that by attempting to teach empathy, we can be one step closer to being more accepting of people (not just children!) with challenges and differences. My book is just one of many ways to tap-in to little minds and give them a spark or WANT to be accepting and kind.

Thank GOD I truly think Frankie was born with GRIT! My wish is for her to continue to grow up being strong and tough! If only you all were flies on our wall here. Our girl is so SASSY and if her attitude had hands they would be wearing boxing gloves! No joke!

Outside of home, we want Frankie to get her confidence back so she can greet people with her chin held up high, like she used to! And, to stick up for not only herself, but for her friends and peers. I want her to break out of her shell and be the mayor again!! 

That's what we used to call her because she greeted EVERYONE! Here's a page from my book.

I have to share these last photos I just saw on Frankie's Facebook school page. I got so emotional! Not because 4th grade is over...but because she was doing something she's never done before!!! She's never climbed on one of those inflatable "things"on her own much less have the courage to slide down one---head first!!

That's her coach sliding down the slide with her last week during their field trip. 

Zero fear---they both have GRIT!!

There is no story that's more special than another. Everyone has one. 

I just knew it was my time to tell ours. I feel one of my purposes in life is to help others accept and celebrate people like Frankie. And to support those that are struggling mentally and have physical challenges. We owe it to these special children and adults to be their voice when they don't have one. 

It definitely takes a village to raise a child. I am so grateful for all of Frankie's teachers, therapists, doctors, friends and family that have been so supportive throughout our journey!

 THANK YOU!!!💚

Special thanks to Leslie Click, my very talented (and patient!) Illustrator!

www.thisgirlsgotgrit.com 

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!!??

______________________________________________________________________________

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.

The Butterfly Whisperer

What a month this has been! I have to say I LOVE FALL! School is in sesh again, which is great--the weather gets COOLER and so do I because of it 😛---and the holidays are right around the corner!

So quick newsflash I wanted to share. I just learned Justin Gallegos, who is a runner and happens to have cerebral palsy just received a pro contract with Nike. How cool is that? Justin said on Instagram, "Growing up with a disability, the thought of becoming a professional athlete is as I have said before like the thought of climbing Mt. Everest. It is definitely possible, but the odds are most definitely not in your favor! Hard work pays off!
I can't agree more...that hard work pays off AND there are NO limits. I try to not limit Frankie in activities knowing she may have difficulty with them and certainly don't want her to ever feel she needs to put limits on herself. This Justin guy is a hero!

Since my last post, we've had a lot going on. I'm trying to focus more on my Beautycounter business and my book is coming along--I can't wait for it to be published and am hoping the message it sends will be all worth it. I'm certainly not a "writer" and don't consider myself to be--but after reading the book "Girl Wash your Face," I have felt more empowered to move forward with this dream of mine, despite my negative internal dialogue telling me it's not possible. I mean, here I am trying to instill confidence in Frankie and I myself still struggle. Come on, self!! Get it together!

Speaking of confidence...Confidence is something I'll continue to try to teach Frankie. Can you teach confidence? Well, I think you can through love, praise, encouragement, leadership..the list goes on. This is one of many reasons we've chosen to do Girl Scouts again this year.Frankie had her first Brownies meeting last month and yours truly is leading this precious group of 10. I'm very honored!
Frankie still struggles with some of the crafts we do--and with comprehending our girl scout lessons but the exposure of being around friends & bonding with them, I feel is so important. AND--this year, get ready guys. We're selling cookies! I know I'm going to have to exercise triple time with my Samoas & frozen Thin Mint obsession, for sure. Not only will selling cookies be fun for the girls, it will teach them goal setting, decision making, money management, people skills and business ethics. These 7 & 8 years olds are on their way to success & I love being a part of that.

The Stubborn Gait

Frankie's gait hasn't been improving that much. We have struggled with trying to find the right orthotics and have recently switched orthotist & are now going to Scottish Rite. After seeing our orthopedic surgeon, Dr. Gill, we decided to get Frankie casted for a taller brace in the hopes this will help her foot from turning in and over extending her knee.

Dr. Gill looking at range of motion in her ankle/foot.

Ms. Cecilia (our new orthotist) casting Frankie's right foot/leg.

Two weeks ago, we picked up her new brace at the new Sottish Rite location in Frisco--we were there the first day they opened. Walked in to squeaky floors and a receptionist that walked us all the way to the orthotics area-the disney way! So grateful they are so close to our home.

Trying on her new brace

Her new orthotic is quite large but we're willing to try anything at this point. Our last option is surgery but we are keeping the faith that orthotics and intensive therapy will help. Until then, you can easily spot her with a knee-high brace covered with butterflies.

Our Ballerina

Frankie loves her adaptive ballet classes every Saturday at Studio3 Dance. Could I have enrolled her in a regular ballet class? Been there, done that and well---Frankie had a hard time keeping up with the dance moves and I didn't want her to take away attention needed from the other dancers. This new place we're at now is perfect for us--she is paired up with an older girl and they work on dance moves, one on one. There's even a recital at the end of the year!---http://studio3dance.com

Frankie & Karina

Thera-play

Therapy is going GREAT--We love Rashi our Physical Therapist who happens to be an Occupational Therapist as well. Win-win! This past month, we've been working on balance and strength. Going up stairs without a railing is still tough--but we're getting there. Mark and I are also trying to work on exercises at home--stretching is still so important and a pain in the rear, to be honest.😩 BUT! It's needed and we have no choice but to push through it. Aside from that, Frankie still needs a lot of Occupational Therapy and we are hoping our schedule, along with the school's permission to allow for early release will allow this to happen.

Education

Frankie adores her teacher, Ms. Plunkett. Academically, she's still slipping further behind which is a huge concern. I've scheduled a meeting with her special education teacher to hopefully come up with a new plan of action. I question whether it's best for her to stay in a mainstream classroom. She definitely needs a lot more one on one-there's no question, so our request for a paraprofessional continues. We have a lot of important decisions to make in terms of what we are going to do...My grip keeps slipping but I have faith that everything will work out.

Thursday evenings, Frankie goes to her faith formation class at our church for kids with special needs. We've made it a tradition to hit Jason's Deli before her class that starts at 6pm--and she gets out at 7pm. Late for a school night, I know--but she loves it! She has at least one volunteer that works one on one with her--sometimes two and a special education teacher that leads the class. She loves the attention and the slower-pace learning environment.

As I sit in the lobby waiting for Frankie, I'm able to chat with the parents of the special needs children in Frankie's class. Last week, our topic of conversation was seizures. One of the parents, who happens to be a dear friend of mine was talking about her son having over 100 seizures a day-- Crazy! The other parent was saying both her sons have seizures and they've had to administer oxygen after some of them. I sat there fully engaged and quietly listening...being thankful ours weren't that frequent and severe, and also realizing that we aren't alone. They say misery loves company and being around others that have similar challenges brings me comfort, as selfish & brutal as that sounds. I'm not saying we are all miserable---we all have been gifted a tougher hand in the card game of life. The silver lining is that this has given us parents a bond like no other....and I'm so grateful for that. 💗

At the end of these weekly classes right before dismissal, the teacher goes around the room and asks the kids what they are thankful for. OF COURSE, I eavesdrop during this time, ya'll know me! 😁 I love hearing what Frankie has to say. The past few weeks she's been saying the same thing--she's thankful for teachers. She knows they will be tickled pink and say..."OH, Frankie---we love that!" Or.."AWWW!." So--she's stuck on that answer. Smart kid!  I'm ok with that but I know she's thankful for many other things.

The Butterfly Lesson

Gotta leave with this. Yesterday, Mark was shaving our cat, Paco in our backyard. Frankie and I were sitting out there too, watching the barber (Mark) work his magic. I have to post this photo so you all have a visual--Paco really does love this despite his grumpy face.😸

As we were all sitting there outside, I noticed there was a dead Monarch butterfly on the ground so I grabbed it and said, "look Frankie!" She wanted to hold it so she grabbed it by it's wings. She asked if it was real and I told her it was, but that it was dead. She asked, "What does dead mean?" I gave her the simple version/answer and I told her dead means when something is not moving or in heaven. She kept studying it and talking to it...then she threw it hard on the ground. Even though it was dead, I said, "don't just throw it down like that, Frankie." I picked it up and then asked her if she knew that butterflies used to be caterpillars. (This is a tough lesson for someone like Frankie, but I attempted it.) She was nodding as if she was understanding and then she grabbed it from my hand again and said "well, I wish it was alive." We were back and forth holding the dead butterfly for about 5 minutes---she then placed it down on the ground, rather than throwing it. THEN---the most amazing thing happened. The butterfly's wings started flapping. I yelled to Mark (even though he was right by us) and said..."Mark look!!! It's alive!!!" After the butterfly flapped it's wings for a few seconds it stopped. Mark said calmly, "Well, since you all were holding it so much if it's alive now then it won't be able to fly." Right after that it started flapping its' wings again---I was cheering it on like a kid! "GO, GO, GO!!" It tried so hard and then started flying higher and higher---then it went over our fence and flew out of our sight!! I couldn't believe what I was seeing!
My lesson from this was not only that Frankie is a butterfly whisperer. I truly believe that our thoughts have energy. I kept thinking about Frankie holding the butterfly and saying..."I wish it were alive." Call me crazy but maybe the butterfly felt these thoughts or maybe this was truly a miracle? I mean--do butterflies play possum for over 5 minutes?
Whatever this was that we witnessed, it was absolutely beautiful.

I'mpossible

Science Project 2017

Rumor has it that you can be a masterpiece and a work in progress, simultaneously. I believe this to be true!I see this masterpiece before my eyes everyday. I can't believe it's been a year since my last post. I just couldn't procrastinate any more.

This past year in first grade, Frankie has progressed academically. Her homework assignments and projects have been a bit challenging for her to do solo. I try to help her as much as I can and struggle with enabling her too much to problem solve, etc...Am I doing too much for her? Too little? Her main weaknesses academically are reading comprehension, math, science and social studies. Well shoot...that's all the subjects, right! ha!

Aside from school work, I have to say we were super proud Frankie received the
core value award at the end of the year for persistence & an award for music.She was beaming!

While Frankie was in first grade, I decided to lead a girl scout troop for Daisies. I wanted to give Frankie the opportunity to join an amazing organization that I loved when I was younger and still cherish. We did a lot of volunteering at a local nursing home that was extremely rewarding. We took a few field trips and Frankie, no doubt made lasting friendships.

The most triumphant thing since my last post was Frankie was seizure free for over a year until the last day of school. I was having a coughing fit that night and happened to get up to check on her. She was sitting up on her bed just staring....I tried to get her attention but failed. I quickly woke Mark up and we both sat by her calmly. I grabbed my phone to take a video since our neurologist likes to see these episodes. Viewing this can help her determine what part of the brain the seizures are coming from and the severity of them. Thankfully, this seizure didn't last more than 5 minutes. WHEW. I was already changing from my pajamas into shorts to head to the ER while Mark was trying to get her to talk. After a few minutes of staring, Frankie fell asleep. Mark moved an arm chair next to the bed and slept right by her as I cuddled right next to her. I was one-eyed Willy that night..slept with one eye open and the other one almost shut,praying she would be OK. Thankfully, she slept peacefully through the night.

Thankfully Frankie's neurologist was able to increase her seizure med since Frankie had recently gained weight.  It's always a plus when you have some wiggle room for a med increase!! I kept our plans to drive to San Antonio to see my sister that morning. We stayed there about a week-so happy we did because we hit another milestone...Frankie mastered swinging on a swing for more than a minute. Doesn't sound like a big deal, but it is for us! She's now able to keep her right hand on the chain link for a while without it slipping. I still have to yell, "straight, bend, straight, bend," to remind her to move those long legs so she can swing herself. This newfound freedom is priceless.

Two weeks had lapsed after the increase in Frankie's seizure medication.Sure enough, she became more irritable & sleepy. (Have I ever mentioned I hate seizure meds???) I called our neuro and she told us to up our dose of vitamin B6 which TOTALLY helped. B6 is known to help with some of the ugly symptoms Keppra can sadly gift you.It took another 3 weeks for her to be back to her normal self. Longest.three.weeks.ever.

Physically, there has been some regression with Frankie's gait, strength and balance. We did a gait study to help us determine where the weakness is coming from that is causing her foot to turn in. The results showed that the weakness was coming from the knee and hip area which wasn't a huge surprise. As her gait continued to become increasingly worse, so did my anxiety.Fortunately, we were blessed to have an amazing physical therapist at the school that worked with Frankie. She was so good at keeping me informed and suggesting exercises we could do at home to help with this new beast...equinovarus is its' name. (fancy word for foot turning in.)

We relied on the Physical Therapist at school a lot since the school pushed back on allowing Frankie to get out of school early for private PT, OT and Speech therapy.This was a battle we had to deal with the whole year. Could we have taken her to private therapy after school? She was so exhausted after an 8 hour school day so after-school therapy would have been counter productive even if the therapists had time slots available.


We also had an amazing adaptive PE coach at school that worked one on one with her. Mr. Swinden  would play Frankie's favorite tunes while walking around the school to help improve her endurance. 20 minutes was our goal. I happened to pull up on the last day of school to see them in action. They were sweating like rockstars...except they weren't listening to rock, of course. I think it was the Havana song!!

Summer finally rolled around and we were trying to make up for lost therapy time. Unfortunately, Frankie's orthopedic surgeon & neurologist think she will need surgery very soon to correct her foot condition. The surgical procedure they are proposing is called the Rancho Procedure. This would lengthen her posterior tibialis and transfer her anterior tibialis. It's unfortunate that we may have to resort to this, but I have to be positive and believe we have no other choice. Dr. Jan, Frankie's neuro wished they could have performed this surgery on her legs when she was younger, but it didn't exist.  The recovery time is around 6 weeks so she'll be rockin' a wheelchair around for a while. We are still not sure whether to have the surgery this Fall or Spring. I still hang on to the hope that we can somehow avoid the surgery altogether.

In the meantime, we have been extremely challenged by trying to find the right orthotics to fit without hurting and causing blisters. Marilyn Monroe says..."Give a girl the right shoes and she can conquer the world." Well..we're trying to do just that! I'm pretty sure we've seen John (our orthotist) 8 times in the last few months trying to modify her custom orthotics.This is another reason we are leaning towards surgery since it's been so hard modifying her braces.

Private PT and OT have resumed with our same therapists this Summer. YAY! I was shocked to receive a letter recently though that our insurance wouldn't cover speech therapy anymore. Wait, WUT?? The explanation went something like..'ongoing private therapy would not improve Frankie's speech because her condition is too severe.' Seriously...this makes zero sense. She has progressed significantly in speech thanks to previous private therapy. Here we go...another battle to fight.

In PT, Mallory focused on strengthening Frankie's glutes (probably her weakest muscle...and mine!hehe) She also worked on getting her foot to turn out instead of in...this is tough! It's not like you can just tell her..."Hey Frankie, turn your foot out!" Imagine if you your arm falls asleep and someone asked you to move it. It's pretty close to impossible. The key is to strengthen the muscle groups that are affected and possibly stimulate them with an ESTIM machine to "wake them up." I have to mention, neuroplasticity and that it IS possible to rewire the brain and thus create movement in places you never thought possible.The brain rewires itself. It's pretty fascinating.

In OT, Jennifer continued to do weight bearing activities to help strengthen Frankie's right arm. She also worked on isolated muscle strengthening in her right hand and wrist which is more difficult. Bimanual activities like opening up lunch items, getting dressed, etc...are still very hard. Being able to get dressed independently has been our top priority. This is a goal the school doesn't touch. It's not an educational need. I'm happy about her attempts to get dressed but I cringe when she struggles. It takes her about...15 minutes in the morning if I can lay out her clothes. If I don't? Well..we are looking at a good hour. ha! If I happen to walk in while she's trying to get dressed, game over. She HAS to do it herself and refuses to ask for help...kinda' like some adults. (guilty!) 🙋I feel her frustration and I can't help but think about her poor tee-necklines that are stretching like crazy. A lot of her shirts are turning out to be one shoulder flash dance tops. When it comes to putting on socks, orthotics and shoes, these are still mom and dad duties.She will get there!Dressess? She'll refuse to put one on. Not because she is a tomboy like I was...if it has a seam around the belly, forget about it. Seams are annoying...even the seams on socks. So now we're dealing with sensory issues. She's so dang determined, tho. Another example of her fierce persistence.

We are still hoping to have occupational therapy outside of school to help us help HER overcome these much needed skills. I won't even go into taking a shower/bath on here. I'll just say that this is the longest we've gone without private OT and it's tough doing this alone. I'll leave it right there.

So Summer is supposed to be about PLAY time! Frankie loves the park and is determined to master the monkey bars. I watch her watch the other kids at school on there and she finds pleasure in that. Although, she wants to do it too!! We've spent numerous hours this Summer at the school's playground. Mark or I will carry her as she goes through the motions of grabbing the bars.
I wish we had bars like those below.....these were at Morgan's Wonderland in San Antonio when we visited this Summer. Amazing park for kids with special needs. How cool, is this?? The thrill is REAL without having to be carried! They even have swings that people can swing on if they are in wheelchairs.

Private tutoring twice a week this Summer was well worth it. One on one time was much needed to help with reading, math and overall comprehension. Frankie also attended a  Constraint Induced Therapy camp which lasted 3 weeks in downtown Dallas. This is our 3rd year participating in this intensive therapy. The occupational therapists cast Frankie's strong arm (the one that is not affected by the stroke) and encourage her to use the affected arm. The therapists make it fun even though the frustration of not being able to use the dominant hand is real. They dance, do crafts and play games. Christine, Frankie's therapist and her have quite the bond. She asked me on the 3rd day, "Did you know Frankie wants to be a singer?" I laugh. "Yes. Her favorite song is...'This girl is on FIRE!'"

We ended our Summer at the beach in Florida. A tradition we will hopefully continue indefinitely. A few days after we got home, Frankie started 2nd grade. She really likes her teacher and we're hoping for a stellar year! Crazy thing is that Frankie's friend she met while we lived in Virginia has not only moved here, she is in her 2nd grade class AND sits at the same table she does! It's a small world we live in.

Closing with this!

It's been at least 5 weeks since we've been to church. Every Sunday we miss, Frankie asks why we aren't going and I have come up with numerous excuses as to why we haven't been able to go.   She LOVES church. I'm not sure if it's the singing she likes or the peace she feels. Last weekend...we went, it was long overdue. While almost there, I pointed to the humongous church and said...there it is! She quickly said, "mommy, my stomach tickles." My first thought was oh no...she's going to be sick. I quickly looked at my rear view mirror to see her beaming with a huge smile! "My tummy tickles so much," she said.  I MELTED because I just knew what she was feeling. I told her, "That tickle you feel in your tummy are butterflies because you're happy!" Gosh, I remember getting those feelings going to Skateland every Saturday. For her to have that feeling going to church? Wow!
During mass there was a gentleman that sang during the readings. His voice was bold and very loud...very...A little different than what we're used to. Frankie nudged me and said with her inside-voice, "When I grow up, I'm going to be a singer." I whispered back..."SHH..of course you will be...but shhhh!!!" Anything is possible!


I'mpossible

*Frankie's adventures/progress will now be on Instagram. Gotta roll with the times, I guess. frankie_and_feli.