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| Science Project 2017 |
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.
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