CRAZYFUN is the word I choose to describe these last few months. This past October,we planned a Perez family reunion in San Antonio and it reminded me how precious family is. I still can't believe our huge turnout! It was well worth the planning. I loved seeing relatives that we hadn't seen in decades. Meeting new family was amazing!
Halloween was right around the corner, and Frankie chose to be a cha-cha dancer when given a catalog of costumes to choose from. I was MORE than ok with that! We had so much fun trick or treating in our new hood with my great friend, Crissey and her family. This year, Frankie was able to walk up door steps with more ease.
Thanksgiving was nice spending it with the Flewelling cousins.We hosted this year. It was so nice to have all of the Flewelling cousins together again. Here they are and yes..we had our Christmas tree up during our Thanksgiving celebration! =)
Frankie had her Christmas musical at school prior to us leaving to the valley for Christmas. I was so worried she wouldn't perform or would be too timid to sing...I couldn't have been more wrong. She sang her sweet heart out. I even had other parents look back at us while Frankie bolted out her tunes. All I could say was,"That's my girl!" I was so very proud of her. We spent Christmas down in the valley at our ranch. All of my siblings and their family were actually under one roof at the same time, which made it so very special.
Our
private PT, OT and ST continue weekly at Children's House in Frisco.In
physical therapy, Francesca finally accomplished stepping up and down a
step without using a railing or a helping hand. This was a HUGE accomplishment! We also
had a bike called an Armtryke donated to us through Children's House by
Grapevine Ambucs. It's an adaptive bike that has lots of straps to make
sure your child is safe and to ensure balance is maintained. It's still a
bit of a challenge to keep Frankie's right hand on the handlebar, even
with the glove that was given to us. We know we will overcome this
little hurdle like we do all the others.
Speech has been going great! Frankie adores her therapist! We are focusing on articulation now and trying to include action verbs in sentences. We
ordered another Benik glove for Frankie's right hand. This glove forces
the thumb to be pulled out, rather than tucked in her fist. She doesn't
like wearing it so I'm still trying to think of ways/incentives for her
to keep it on. This is the longest we have gone without doing ESTIM on
her right arm, and it shows. We are waiting for our therapist to get her
certification so that we can use it during our OT sessions.These past
few months in OT, we have been focusing on strengthening the right hand and
arm and working on bi-manual activities. I didn't realize that we have
totally been neglecting working on fine motor skills on the LEFT
hand...the hand that Frankie will be writing with.
Aside from therapy, Frankie is flourishing at school. I'm so grateful that she tells me she loves it. I am not exaggerating by saying that every day after school, Frankie says hi to everyone as we walk out of the school to walk to our car. Funny thing is now some parents are saying, "HI FRANKIE!" back. They know her name now.She will always be our little mayor..so stinkin' friendly to everyone. Who knew spreading happiness can be so easy?
These past few months, I have seen all of Frankie's classmates color these beautiful paintings that are sometimes displayed outside the classroom. Frankie's are usually close to blank. Why can't she draw a happy face? I get an ugly ache in my stomach about that, but I force myself to brush that feeling off and think, "Give her time, she will get there!"
Not
only do I see beautiful paintings from other kids,most of the students
in Frankie's class can write their names. Frankie still has a hard time
tracing letters. We think there may be some visual/motor issues
hindering her to focus on lines and to keep her hand steady. Imagine if
you were born to be right handed but are forced to use your left hand.
Because of this challenge alone, Mark and I decided we would invest in
handwriting classes for Frankie this Winter/Spring rather than focus on
sports and dance. We found an amazing occupational therapist named Jan
who owns a handwriting clinic in Plano, Texas. Our first meeting was an
evaluation. It was SO very eye opening and yes, I sobbed in front of Jan and her intern after realizing how far behind we really are.I'm sure they loved their
first impression of me! Our second meeting was one on one, with me and Jan.
This involved teaching me how to teach Frankie the proper way to hold a
pencil, different strategies to get her to strengthen her grip,
etc.. I was quickly told to stop teaching Frankie capital letters and to only focus on lower case letters. And, we also need to COLOR more...even though Frankie doesn't care to. We have been attending these classes once a week and we have
already seen some fabulous results! During these tutoring sessions, they not only work on handwriting, they do many other activities to strengthen her fine motor skills for her LEFT hand...the one we haven't been focusing on.
Because
we have been noticing visual issues that haven't been corrected with
her current glasses, we saw another pediatric opthamologist to get more
answers. During our visit 2 weeks ago, we waited in the lobby after they
dilated Frankie's eyes. I was becoming very concerned because she was
having a hard time standing up during our short wait. My
first thought was, oh no....seizure!? I asked the girl at the front desk
to get the Dr. and they quickly called us back. I didn't realize that
when they dilate your eyes, they are using a muscle relaxer. They seemed to be surprised that Frankie was having a bad reaction, but they proceeded with the exam.
After the exam was completed, the Dr.gave us a weaker script which was surprising, and one
that would help correct a stigmatism in the right eye. He also referred
us to a retina specialist in Dallas for a more thorough evaluation. Our
appointment is in 3 weeks and I'm SO looking forward to learning more
about what vision issues we are dealing with. Since Frankie's lesion in
her brain is close to the optic nerve, it doesn't surprise me that
glasses may not be a cure all. I want to avoid surgery at all costs. <Deep breath. It's alright. I can handle this.>
We
continue to see Dr. Jan, Frankie's neurologist who has cerebral palsy
herself. Dr. Jan never had the opportunity to take a dance class as
a child so she started ballet/jazz classes for kids with CP taught by
physical therapists. Brilliant!! Frankie enjoyed the ballet classes and
we are looking forward to enrolling her in dance again in the Fall.
Every time we see Dr. Jan, she evaluates Frankie's progress thoroughly.She looks at the BIG picture. She checks her range of motion in her legs and arms, watches (and videotapes) her walk so that we can track her progress, checks her eyes, heart, the list goes on...I never leave there without a question unanswered. Frankie has been having headaches recently, so we saw Dr. Jan last week. (photo below.) She increased the dosage on her seizure medication and didn't think there was any need for another MRI or EEG at this time. Whew. Who likes those?
A couple of months ago, Dr Jan recommended a "noodle brace" for Frankie's right foot. She herself wears them. This brace is designed to keep Frankie from overextending her right leg and to help her gait. It took 6 long weeks for our custom brace to come in. Now that it's here, I am SO amazed at how tolerant Frankie has been wearing it. Shoe shopping has been a bit challenging, especially when you get side tracked eyeing cute clothes. Thankfully, after a few short hours with Frankie's brace in hand, I found a few pair that fit great.
So there's school, therapy and play time! We have to make time to play! Frankie has been to some play dates and she has met and played with a few kids that will be in her kindergarten class next year. We are so grateful to have such awesome neighbors!
All in all, there are days when I feel consumed with worry and questions. These are the days I do more meditating, exercising (yes, it's therapy!) and praying. I try not to compare Frankie to other peers, but it's tough when you are being compared to others by the school and therapists.Thankfully, there are more days when I feel so damn blessed. I am a firm believer that positive thinking leads to positive outcomes. I have the 4:8 Principle book to remind me of that.
"When the road ahead seems too long, look back to see how far you've come. For, even if the hill before you is steep, the view gives you hope to finish the journey." -Adira Kessler
