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.