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.

Our Easter Miracle

Wow...It has taken me a couple of months to post this. I didn't want to have to relive the month of April. I also don't want to bring people down by depressing posts. But it is what it is!  I have to press on with this blog. My purpose is to update family and friends on Frankie's progress and to help other parents/caregivers that face similar challenges.

After my last post, things seemed to be looking up until Frankie's fever and rash persisted. They were relentless. They would not go away. I took Frankie to the ER at a local hospital once again because she seemed dehydrated and her fever wouldn't go down, even with alternating Advil & Tylenol. After an IV of fluids and a test for strep, they let us go and said it was probably a virus causing the fever.

A few days later, I took Frankie to Children's hospital in Plano because her fever was still high and she was dehydrated, once again. I'm so glad I took her in again because by the time they had a room ready, she had a temperature of 107! Forget transferring her to the ICU...they wanted to transport her to Children's in downtown Dallas because they had a team of infectious disease doctors. They knew our history and that Frankie has had this mysterious fever and rash now for weeks. ID doctors are supposed to be some of the smartest docs on the planet so I was thrilled that we would possibly be closer to getting some answers and treatment!  As we were loading her up in the ambulance (I was sitting shotgun next to the driver,) one of the guys in the back that was tending to Frankie said something to the driver via radio. The driver got out of the ambulance and I quickly opened my door and ran to the back to see what was going on. They said Frankie couldn't be transported to the hospital...her blood pressure was dangerously low. I think at this point I couldn't feel my legs and everything around me was blurry. Was I about to have a panic attack? There was no time for that. They rushed Frankie back inside the hospital into their ICU area. I had already called Mark and he was on his way from work to Children's downtown. I remembered to call him back to tell him we were staying at the Plano hospital and to NOT head downtown. Deep breaths. Slow breathing. I managed to stay composed.

The next day, Frankie was finally able to be transported downtown. Once we arrived, we were put in this tiny room and every time a nurse walked in, they had to put on this yellow gown and mask. We secretly called them minions because we needed to laugh at something!  Every person that entered the room had to wear those gowns/masks. We soon learned that Frankie was in quarantine because nobody knew what was going on and she could possibly be contagious.

That night, Mark slept on the floor and I felt so bad. I had a couch to sleep on. We had asked for a bigger room or even an extra recliner but they said they didn't have any. Sleeping comfortably was truly the least of our worries tho...we were hoping that someone could tell us what the HECK was going on with our daughter!! What does she have? A virus? Pardon the medical terminology but Frankie's neutrophils were at ZERO. Yes, ZERO. Her platelet count was extremely high and lymphocytes were WAY out of whack. Could all of this be a side affect of the tryleptol--the anti seizure med that we added a month ago? We had taken her off of this medication not knowing if it was toxic. Kawasaki disease was still on the table too so the doctors ordered an ECHO of Frankie's heart to rule this out after she was stabilized.

I have to say the sonographer was SO very kind. It was nice that he came to our room, well..maybe he had to given she was quarantined. When the procedure was all over, he let Frankie use his instrument to pretend as if she was giving herself an echo. She really enjoyed that. He even said I could videotape it, which I did. Wait, can you see his minion cape in the photo? ;)

Bloodwork was done around the clock and we were told an oncologist and rheumatologist were going to meet with us the following morning if Frankie's numbers didn't improve. A spinal tap would have to be ordered. I gulped. I googled like crazy because I had the lab work numbers in front of me. I wanted to cry. Well, I did cry. I noticed Frankie's liver count was WAY off in addition to everything else....Could she have leukemia because of the crazy platelet numbers? Is this why the oncologist is coming to talk to us? That night was one of the longest nights ever. I got on my knees and prayed. God, NO! Don't let her have a terminal illness. Please heal her! She's a fighter. She will be fine.

Did I mention that next morning would be Easter morning? Meanwhile, we were trying to play games with her, even allowing her to put on my makeup!! I kept trying to keep her mind off of the IV that was in her arm for days AND that we were confined to one room. I honestly think I was more bugged by this than her. How selfish!?

There was a really nice guy that kept visiting us periodically. He's an infectious disease resident. He, too was a minion! They all had to put on those yellow gowns and masks.  I really liked him because he made me laugh (would throw in a joke or two,) and he would mention his thoughts on a possible diagnosis. He threw out things like...maybe she has celiac disease. Maybe this IS Kawasaki disease after all. I felt like I could talk to him like a friend so I begged him to walk down the hall and go check to see if the lab work from that early morning was in. Pa-LEASE!? Can you??

Within an hour, an oncologist came to our room. I really didn't want to see him. I was hoping for an ID doctor to come in and give us good results. I glanced at the oncologist with a fake grin, he looked at me, then at Mark and smiled. He introduced himself and said that Frankie's numbers significantly improved. No spinal tap was needed. He was convinced that we were dealing with some sort of virus, rather than a form of cancer. Can I just tell you how RELIEVED I was? Mark had this look on his face I can't describe. It was one of the happiest days of our lives. It was our Easter miracle.

We were definitely not out of the woods though. The rheumatologist came to our room later that morning to talk to us. She examined Frankie thoroughly. They had to rule out a certain types of autoimmune diseases that could strike with early symptoms such as the ones Frankie was presenting. Thank goodness, they were ruled out for now.

As the days progressed, Frankie continued to improve. Her fever subsided and she slowly came back to her spicy self. On April 18th, I got the best birthday present ever. We were able to be discharged! We happily left the hospital, even though we were extremely grateful for the team who possibly saved Frankie's life. We later learned she was septic.

As we drove off from the hospital, I quickly rolled down the windows of the car. It was our first time to breathe in fresh air in 6 days. It was amazing! I wanted to sing and scream out of happiness. I wish I knew what Frankie was thinking but she was smiling. And giggling. That's all that mattered.

When we drove up to our driveway, one of my besties Amy was placing something on our porch. BUSTED! Our front door was adorned with flowers and gifts from family, neighbors and friends...none that were needed, but much appreciated!Best part of all? We were HOME and healthy.

Because of this crazy medical mystery, I asked our neurologist to order a genetic test for the MTHFR mutation. Actually, my sister, Carissa did. She was able to go with me to our follow up with appointment with Dr. Jan. We go over the test results tomorrow. I have read and studied many of the results that are in and they are fascinating. I will definitely write about them during my next post.

Aside from all this medical stuff, we were able to watch my niece graduate from high school and spend a week on the beaches in Florida. This trip was amazing and much needed! Frankie has always been a beach baby, thank goodness. We took in the fresh air and rarely thought about our real world. It was our little paradise.

Rewinding a bit...A LOT has happened at school since my last post and with our ARD meetings. These are meetings that teachers, specialists and parents/caregivers have that go over academic goals for children that qualify for special education. I don't want to use this platform to get into details, but we are hoping for a brighter year in the FALL, and for more resources for Frankie.I will definitely post more later.

Not surprising to us, Frankie qualified for Summer school. Her last day was last week. Let our Summer begin!!! It was a three week program that focused on literacy and reading. Frankie loved her teacher, but he left after the second week! They had a substitute the last week. The most rewarding thing was that she met Kaylee...a neighbor and now best friend that was in her class. I know these two are going to be tight and hoping they are in the same 1st grade class in the Fall.

We continue to have fun at our neighborhood splash pad, pool and park. We will be leaving to McAllen/beach in a week to sneak in one last vacay in before school starts on August 16th. Seize the day, right?! This Summer is already flying by.

(Thank you, Sara Van Buren for this photo of Frankie!)

I have to leave with this.

Yesterday morning, Frankie said this while she was sitting down eating breakfast. Keep in mind she still struggles with speech. Sometimes, she has a hard time finding the words she wants to say.This can be frustrating for her. So here's the dialogue I wrote down and can't stop thinking about.

Frankie: "Mommy. Last night I went to the ceiling." She paused. "To see Jesus."
Me: "What? Really? Were you flying?
Frankie: "Yes. And I didn't come back."
Me: "What? Why? Why didn't you come back?"
<silence>

As soon as she said this I wrote it down. I was shaking. I called my sister, Carissa and had her talk to Frankie. I was hoping she would possibly open up and tell her more. She kept going on with her story...I'm guessing it was a dream she had or a visitation from HIM.

SOAR!

Today was a day that Mark and Frankie were going to spend the day together. I planned to meet a dear friend for her birthday celebration in Fort Worth. I had also planned to attend a get together tonight. Well, I was bitterly reminded how much epilepsy bites and can sever plans abruptly. It's ok though. What happened to us last night makes us put everything in perspective, once again. 

This past month has been eventful and fun! We had some close friends from Virginia stay with us for a long weekend. They had never been to Texas! Frankie loved showing them the ropes, being the lead during our shopping venture in good ol' downtown Grapevine. Please go there, if you live nearby and haven't been!

Valentine's Day is a hallmark holiday and we happen to love it! Do I have a frog in my pocket for saying 'we?' Maybe. I know Frankie and I love it. =) Frankie had a Valentine's party at school so I decided to volunteer to help with that. Wow. I have even MORE respect for teachers, if that's even possible. Lots of kids, lots of noise and lots of candy surrounded the room. Oh, and lots of love!

In late January, Frankie had a follow up visit with her neurologist Dr. Jan. She always does a thorough exam. She checks Frankie's range of motion in her legs and arms. She videotapes her gait and has her walk and run with and without shoes. She also records her talking. I absolutely love this because it helps us measure progress! Things went SO very well. Frankie's physical therapist, Mallory happened to be at Dr. Jan's office (she works there one day a week) when we were there. They both agreed that we should try Botox. No not on my crow's feet, silly!... on Frankie's ankle area and lower part of her right leg! This should help lessen the spasticity and allow her to have more range of motion in her right foot and leg. This way, she is lest likely to walk on her toes and hopefully be able to put her heal down first while walking. We will be scheduling this appointment soon and not looking forward to her having to endure all the pokes but we are more confident it's for the best after being on the fence about it for two plus years.

Throughout the neuro appointment, Frankie was very communicative and cooperative. In the past, she would clam up and not be very talkative. We realized how much weight Frankie had gained and Dr. Jan said this was the "best appointment to date." Frankie is showing a lot of progress in terms of health, motor skills, fine motor skills and speech. YAY!! Reducing gluten intake and "eating right for our blood type" have truly helped.

Let's see, we visited the dentist and Frankie remains, cavity free. She was so giggly during the exam. It's finally getting easier and pleasant. A few days after the appointment, she lost her 5th tooth. Mark had to tug on it a bit but in the end, it fell out on it's own and...was swallowed down the chute. No worries. I made a really cool fake one out of toilet paper and water....I was pretty impressed by it myself. If she knew her tooth was forever lost she would be devastated. After all, the tooth fairy takes her teeth away at night so that she can make her a pretty necklace out of them when she's older. ;)  Thanks Mimi, for instilling that in her. :)

Weekly private therapy continues, however I was just informed that we may not be able to take Frankie out of school early to take her to therapy anymore. Texas law. Huh? You can take an autistic child out early for therapy, but not one with cerebral palsy. You can also take a child out early for dance, equestrian lessons, etc...because it counts towards a PE credit but...you can't take a child out for physical, occupational and speech therapy. Seems a little strange to me. I literally need to read a law book to accept this.

In physical therapy, Mallory gets Frankie on the treadmill and continues to work on strengthening Frankie's glutes. Backwards walking is a great exercise we do there and at home that can help with this. Mallory & Frankie also do fun stuff like riding on a scooter!  In Speech, Mr. Tim says Frankie is so much more talkative and verbal. Her sentence structure & articulation have improved significantly. Ms. Jennifer, Frankie's occupational therapist continues to try to get her to do bimanual activities. They also do a lot of fine motor activities. Recently, she was having Frankie put some puzzle pieces together while I watched. We were both really concerned because Frankie would try to place a puzzle piece about an inch away from where it belonged. Just another reason why we need to find a vision specialist.Thankfully, I recently found an optomotrist in Prosper who does vision therapy and has worked with kids like Frankie. We have our first exam with her this Monday. We are hoping that glasses and/or vision therapy can improve Frankie's vision and hopefully help her with handwriting & reading. Prism glasses may be an option if she does indeed have field cuts, which is what we suspect. Regardless of what the outcome of the visit is, Frankie's care team & I have all agreed that there is definitely something going on that's not right. No eye doctor has been able to pinpoint the problem as of yet. We have been through many.

As far as school goes, Frankie recently participated in a fun run to raise money for classroom resources, bike racks and playground equipment. It was a chilly morning but Frankie managed to run 22 laps! I was there taking snaps as usual, watching her braids fly in the air lap after lap. She never got tired. Her teacher, Mrs. Jackson whom she adores was by her side the whole time. Everyone had a great time.

School can be fun, but I have been more and more concerned with Frankie's lack of progress. What subjects? Well, really all of them. Math, social studies, science and reading. I look at her progress reports and get that ugly feeling in the gut every time. After consulting with other moms that go through similar challenges with their children, I was encouraged to speak to our special education director for the ISD to see what more we can do. Time is very precious and I can't sit back and do nothing. Frankie's care team agrees that she needs more.

I was able to meet with the director last week. I walked in with a law book, IEP book and a binder full of notes. I had done some research in terms of special ed laws & regulations in Texas since it's significantly different here than it is in Virginia.

The meeting went well and much of the information will be included in our next IEP meeting in a few weeks. One hopeful outcome is that Frankie will soon be learning the keyboard at school too, YAY! That is, if the recent evaluation proves the need. I'm sure it will. Keyboarding  & assistive technology are things I requested at the beginning of the school year but it's taken a while to get the ball rolling.

So...last night was a little crazy. Mark, Frankie and I went out to an early dinner. We all went to bed early, around 9?? even though it was Friday night. Ahem, this is no surprise to those that know us well. Around 10:00pm, Mark and I both sat up in bed at the same time because we heard a strange noise coming from the monitor on my nightstand that's connected to a camera in Frankie's bedroom. It sounded like snoring. Mark jumped out of bed faster than I could. When I walked out of the bedroom to run upstairs, he was already running downstairs to get the Diastat. My heart was racing and I knew Frankie was having a seizure. I quickly grabbed my phone and ran upstairs. Frankie was seizing and having problems breathing through her nose. She was a little congested so Mark grabbed the bulb aspirator to clear up the airways in her nose. (You should never open their mouths during a seizure!) Mark administered the Diastat and I called 9-11. I called paramedics because I was more scared this time. We had the breathing issue and we didn't know how long she had been seizing before we heard the noise. Thankfully, the seizure stopped 2 minutes after the syringe was administered.Shortly after, an ambulance and fire truck show up and about 8 men were squeezed into Frankie's bedroom. They checked her vitals and at that point, she was postictal and out of it. They asked if we wanted her transported to the hospital and we agreed not to. Her vitals were good and we knew she would be most comfortable sleeping the med off at home.

Mark slept with Frankie last night and I'm sure we both didn't really sleep. This morning, I got sweet texts from neighbors that had seen lights & paramedics at our home wondering what was going on. I'm so grateful to live in this community where friends look after you and truly care. I feel secure knowing some of my close friends are just steps away from our home.

We had to wait until 8:15 this AM to call the pediatrician's office to find out a possible seizure-trigger. 9 out of 10 times it's triggered by illness. Our appointment was scheduled later this morning and strep was negative, ears looked good and everything seemed fine. I don't know if I was relieved or not. I wanted a stinkin' culprit! I emailed Dr. Jan to see when we can get in to see her. I'm 95% she is going to add a seizure med to our lovely arsenal of drugs since Frankie is maxed out on her current one.

We have to remain optimistic that one of these days, these seizures will never come back. They are ugly and I want them GONE. SHOO! I'm happy knowing that this is Lent and that crazy-awesome, miraculous things happen during this season. They happen all the time! I took this photo above a few weeks ago and love it so much I wanted to share. The trust our little girl has in us is endless! The impulse to learn on her part is there and we will continue to do everything we can to push her to fly and soar. These seizures, well they are just that. Seizures. Small road blocks that we won't allow consume us.

"One can never consent to creep when one feels an impulse to soar." Helen Keller