fear NOT!

Now that we are acclimated here in Texas, we've been able to spend a little more time with family and get settled in with everything else. I'm not sure where winter was this year, but I think we skipped it. That's alright. HELLO Spring!We are now trying to get Francesca prepped for kindergarten.Unfortunately, for us it's not as easy as signing her up for kinder roundup. We have to go through extensive evaluations to make sure she will have the resources/modifications necessary for her to be able to learn at her highest potential. We are extremely grateful for this! We know she has developmental delays, but I keep scratching my head wondering what the word "delay" really means in terms of a speech or motor skill delay? When my flight is delayed, that means I know the flight will take off eventually. When you are told your child has a speech delay, does this mean your child will eventually be articulate and catch up with his or her peers? Will the "speech plane" ever get here? If so, how long do we have to wait for it?

In the midst of settling in and pondering the unknowns,we have missed my parents and siblings a bunch. For spring break this year, we decided to head to our ranch for some R&R and to spend some time with my parents. These opportunities are cherished and don't happen enough, but when they do you are sure to find a lipstick-stained smooch print on your cheeks from Mama Didi that you don't ever want to wash off.

As soon as we got to the ranch, Frankie wanted to sweep.I was so happy to see her so motivated to do what I dread AND for using her right hand to assist.Thankfully, there were no scorpions in the dust pan this time. =)

Our days at the ranch were short but we tried to stretch them out. Mark took Frankie out fishing in the pond the first day and she caught her first fish…and her second, third, etc…She was so happy and fearless to touch them...definitely takes after her Dad.

One of the highlights of our stay there was the rain! Cattle raisers & farmers love rain so we grew up embracing it. After the first night of hard rain, we woke up to a gorgeous double rainbow.I took the photo below on my phone as soon as I walked out of the screened porch.I quickly scrambled inside for my "nicer" camera and when I hauled tail outside with it, the rainbow was gone. I was just so thankful to have captured it.

After our week down south, we were back to reality.We signed Frankie up for some WAY overdue swimming lessons that has one instructor for every 2 swimmers. Frankie did great the first day. I have to say I was nervous nellie when Frankie was taken under water for more than 5 seconds. It may be hard to believe, but that was her first time being under water for that long.
Holding your breath underwater is one thing, but learning to paddle is another. Frankie is still having a hard time kicking her right leg. I'm confident this will happen in time. Our swim instructor told us to practice on a bed, belly down and have her kick.

Not surprisingly, the other 5 year old in our class is more advanced so I spoke with the owner of the facility and expressed to her that I didn't want to take away from the other girl's advancement, knowing that Frankie is going to need a bit more guidance. They made arrangements for one on one lessons. I think we all felt more at ease.

After our second week of swim lessons, I treated Frankie to her first mani/pedi.since she has been working so hard.Right after sitting down to get her manicure, I was a little worried not knowing if she would be able to keep her right hand open long enough for the polish to dry. OH, what a dilemma we were in!! ;)  That little FEAR of mine was quickly taken away. Soon after Frankie sat down on the pedi chair, a little girl (also 5 years old) sat on the chair next to her. At first, Frankie didn't say a peep. I was telling my nail technician, Quincy that Frankie would be chatting away in no time. She just needed to warm up.
Sure enough, after a few minutes Frankie asked the girl what her name was and the dialogue began. This was the perfect opportunity for Frankie to open up the first page of her storybook. These stories of hers can last a while and sometimes they don't make a lot of sense to others.  She is always so very animated when telling them, moving her arms around and making facial gestures so I, personally am always captured by them. A few minutes after she started telling the sweet girl her story, the girl looked at Frankie in confusion not saying a word. Frankie then looked at the girl and said, "Why are you staring at me?" Quincy and I busted out laughing!!We were both so amazed and amused by Frankie's keen perception of the other girls' reaction.

Easter was here before we knew it. We had our neighborhood Tribute Spring fling and wow!! What an awesome set up they had. Seeing a drone taking photos overhead during the event made me realize how different our world today really is;not just by living here, but in many other ways. The Easter bunny was at the event, so we made a bee line after the Easter egg hunt to see him. I was hoping Frankie's fear of the hairy-scary bunny was gone. Not only did she want to hug him and make him hers, she asked him if she could sit on his lap!! After she asked him, he gave her a big thumbs up meaning yes because remember…rabbits can't talk.As we walked away from the photo area Frankie turned back and shouted to the rabbit, "Oh, and I want 6 eggs!" 

On Easter Sunday, Mark made a killer brunch here at our home. Having family here made it very special. Seeing Frankie with her cousins cracking the cascarones (confetti Easter eggs) on their heads took me back to my childhood days with my first cousins at my grandmother's ranch.

The Spring holidays are over but we will be very busy in April with weekly evaluations at our new school, blastball, private therapy, swimming and the handwriting clinic.We had a little scare this past weekend on April 2nd that made me feel not so overwhelmed by all the things we have going on.

On the night of April 1st, Frankie told me her ear hurt.I was actually somewhat happy that she was telling me this because she can now localize pain.First thing Saturday morning, I called our pediatrician's office to see when I could get her in. In the meantime, Mark was playing upstairs with her and I was getting Frankie's blast ball outfit ready for team photos we had scheduled for 10am that morning.A few seconds after I walked upstairs, she collapsed in her chair next to Mark and thankfully, he caught her before she fell to the ground. We both looked at each other and said, "Let's go!" We said this at the same time because we both knew and feared what was happening to her. Seizure. Within seconds Frankie was responding to us but leaning on Mark's shoulder as he carried her to my car. We didn't care about strapping her in the car seat. She quickly started to cry. This was good because she was alert but I just wanted to step on the pedal and go! Mark was barefoot and ran inside to get his shoes on while I started the car and stroked her. I was trying to keep her awake and calm. A minute later, she threw up and within the next minute, Mark was in the car and we were off to the same emergency room we went to on August 2015.I was on autopilot there because they took such great care of Frankie before and it was the closest place I knew of.

I took this photo of her in the ER only because I wanted to give my siblings the A-OK that everything was going to be better than fine. They are the first ones I text as I know they are always so quick to respond.

The same doctor that was in the emergency room during Frankie's seizure last year was there!  Thankfully Frankie was awake this time. After telling him what had just transpired and her recent ear pain, he looked into her ears with his instrument and pointed to something ketchup-red in the room. He said that her right ear was as red as that.I was so relieved to know we had a culprit.

When I spoke with my brother, David later that day, I was telling him how scared I was. We talked about fear, and he said this. "You can handle FEAR in two ways, Lisa. F@#$ Everything And Run, or Face Everything and React." I told him I think Mark and I did the first acronym that morning…we f@$%ed everything and ran. But, we weren't hysterical and panicking in the process. It's hard to teach yourself to react calmly to something that can be so sudden and scary. What helps me to prep for the "next one" is praying,exercising and knowing what to do in terms of seizure protocol. It's important for me to make my body/mind stronger for the adrenaline rush that may be about to soar through my body at any given moment.

One of my favorite anti-fear quotes is by Dale Carnegie. I'm closing with this.

You can conquer almost any fear if you will only make up your mind to do so. For remember, fear doesn’t exist anywhere except in the mind. ~ Dale Carnegie

Settling in Texas!

I truly missed how therapeutic it is to write things down, type things out and to simply talk about Frankie's progress to others. I can't believe I haven't posted anything here in 4 months. I promised myself I will post monthly again. It's hard to cram all that time into one post, but here it is!

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

"SEIZE" the day...wish I had a sweeter post.

As many of my friends know, I am definitely one to cease the day! Love that saying. I try to make the most out of each day and thank God for how blessed we truly are.

Frankie and I flew to Florida to visit and relax at the beach with both my sisters, Cici & Carissa and their families. After our first day on the sand walking bare foot, Frankie was screaming and telling me her foot hurt...not her right one,the stronger one, but her left. Mimi (Aunt Cari) thought it was a muscle cramp in her foot so we had her shove down a banana and drink lots of water. The pain subsided after a while so we opted to keep her orthotics on while on the beach. NOT fun for most kids, but Frankie was OK with it.

Frankie & MIMI

Frankie & Aunt Cici

The rest of the vacation couldn't have been more fun. Frankie had a blast with her cousins, Zach, Alexis and Jaqueline. We went ghost crab hunting and did a lot of walking on the beach. Frankie waves to EVERYONE and says hi as she is strolling down the coast line. We were calling her the mayor of Crystal Beach!

She even stopped one gentleman on his beach chair and said, "Are you drinking apple juice?" He nodded yes with a half smile. Uh, it was a corona in a bottle. We're not supposed to have bottles on the beach but the mayor didn't care. 

When we flew back from Florida this past week on August 11th, Mark picked us up from the airport. Frankie was so excited to be home. We got in around 4pm and headed to a local restaurant. Frankie seemed tired in the car so she took a nap in her car seat. I decided to give her more time to nap before we ate so I asked Mark to drop me off at Target to get a few items as she slept. As I walked out of the store, Mark said, "I think you need to check on her. She's not answering me." As I opened the back door I saw her eyes rolled to the side. "FRANKIE!!!" I yelled. "FRANKIE!!! Can you hear me?" She didn't respond. Her eyes were open and turned to the right. I knew in my mind that it was a seizure but my heart didn't want to believe it.I told Mark to drive to the ER....He knew of a clinic about 20 minutes away. Meanwhile, I videotaped her seizure with my phone and kept trying to get her attention. I remembered to leave her alone if it is a focal seizure so that's what I tried to do...but I kept attempting to get her attention. She was unresponsive.I was panicked but composed.

We got to the ER and they quickly gave Frankie Ativan. She quickly came out of the seizure but fell asleep. They did a cat scan and kept her on oxygen. After the scan, the Dr said..."I think you need to see this." 

Quick background on brain scans: As some of you know, Mark and I had decided against an MRI for Frankie in the past. I knew she had some sort of lesion on the left side of her brain that was causing the right side to be not as strong. Since she was 7 months old, we have been treating the symptoms. She has been in PT and OT since then and has seen many specialists...from Physiatrists to Neurologists. We didn't need the MRI to give us a crystal ball or to prove what we were living with. We didn't want to put her through anesthesia unless there was a dire need.

So,when I saw the cat scan, I wanted to pass out. Frankie had a huge cyst, covering 2/3 of the left side of her brain. The Dr used the word, "miraculous" to describe Franke's ability to walk, talk, etc...He said if he saw an adult with the same MRI,he or she probably wouldn't be able to move their right side or talk.

That same Dr. said she it appeared she had an arachnoid cyst. Well, Ms. McGoogle looked it up and had my sister do the research on it. Meanwhile, we were being transported via ambulance to ICU at Children's Hospital in Dallas.I was able to ride with Frankie and she was slowly coming out of her sedation. The super cool ambulance was made specifically for children. I was able to choose her favorite show out of a library for her to watch on their flat screen tv. I chose good ol' Curious George. I'm sure she enjoyed it. 

After being in the hospital for 3 days, we learned a lot by the MRI and EEG of the brain. The Neurosurgeon concluded that Frankie has static encephalopathy. Huge second word. The word static, when I first heard it, made me feel much better. The cyst will not get bigger AND...she was born with it. The Neuro team concluded that she had a stroke in utero. This is what I suspected all along. I just didn't realize the cyst was so HUGE! Thank God for neuroplasticity. Frankie's right side of the brain and part of the left has been compensating for the damaged area.The brain CAN rewire itself! Early intervention including therapy is to thank for this. And God. 

Here's a visit from Nana during the EEG. 

We are now out of the hospital, but have to deal with possible seizures. Frankie is on a medicine now twice daily.  I have to thank Uncle Matt, our first visitor for putting the first smile on her face! I also thank Nana and Aunt Kristin for coming to visit us. Ashley, thank you for offering to come and my parents for sending her the biggest Olaf I have ever seen! To my entire family and friends, I thank you for your prayers. I felt them! We didn't want to tell many people that we were in the hospital because we knew everything was going to be OK. With that said, I'm extremely confident that her seizures can be managed by these new meds and she will continue to amaze us everyday. We start school in 2 weeks and will be going to private PT, OT and ST weekly. I see Ballet in the near future too!I'm looking forward to getting into a routine, no doubt. 

We are finally home!

As I sat in front of all the kids at Children's Therapy Center in Virginia during our last day there last month, I have to say I was struck by some intense emotions. Frankie has been a willing patron there for 4 years. I say willing because she has never dreaded going to physical and occupational therapy weekly. In fact, she screams with excitement on our way there every Wednesday. NOT kidding. However, her visits there when she was 6 months old didn't start out that way. There were many tears. At that time, our main goal was to get her to sit and keep her head up. Belly-time...was rough-time. Through the weeks, months and years, therapy has been a part of our lives and our therapy angels have made it fun. Spending our time there every week has been "normal" for the both of us.What IS "normal," anyway?

Here's Frankie playing a little game of "wipeout" with her PT, Ms. Amanda during our last 2 weeks there.

We were able to see Kathryn, our occupational therapist on our last day. THEY are smiling, Mama was crying. The photo says it all. Frankie thinks she hung the moon! And heck ya...we had our Texas tee on! Thank you, Tia Rose!

We worked with Hannah on our last day of PT since Amanda was out. Hannah is a sweetheart! She had Frankie step down from a platform with one one leg at a time, and touch a bubble on the floor with the other foot. This helps build strength and balance.As you can see, Frankie still needs assistance with this. I'm pretty sure I would have a hard time with this exercise too! 

After our last day of therapy,I had time time for my wandering mind to reflect on our last few years in Virginia. I want to hit myself (well,not really,) by not insisting that we have private speech therapy weekly. I see other kids Frankie's age having grown-up dialogue with other kids/adults and I still don't get much of this with Frankie.I purposely ask her open ended questions as soon as I pick her up from school each day in the hopes to get her thinker to spin. Sometimes, she doesn't want to talk. I totally remember not wanting to talk after school, so I get it. Who wants to chat after talking and thinking all day?

But, I keep trying to get her to chat. When I picked her up in the carpool line the last week of school, the first thing SHE asked ME when she was strapped into her seat was, "what's on your chin?" I replied, "which one?" HA...She kept pointing at my chin. I had to laugh and said,"That's a zit. A pimple." Then she quickly belted out the song, "Jesus loves me this I know." I quickly forgot about having to nurse the growth on my chin that she was so quick to point out, and was reminded how happy our little girl has been in the Christian school that she attended!

I must add that she was really proud that Daddy came to school for Daddy Appreciation Day. Mark was trying to take it easy on the carbs that week but I told him he better shove those muffins down, or else! hehe

Our last month in Virginia was eventful. We were able to hit the soccer field a few times. Little Miss F had a hard time hanging with the soccer group. She wanted to go out and do her own thing. Another reminder that we need to get her into more recreational activities with peers so she can get use to following directions and being part of a team.

Saying our last goodbyes was tough. I purposely avoided seeing a few friends (you know who you are) for the last hug. Selfish, I know. BUT, I have always had a  hard time with goodbyes. Actually, I don't believe in goodbyes, because I always have hope I will see people again. BUT...I still don't like them.

After a 3 day drive, we are now residents of Texas again! Yehaw! Frankie was SO awesome during our trip...thank goodness for the TV in the car but she wanted to hear her Christian music from school most of the time. We all have it memorized now. =) Here she is posing after being forced to, right after we hit the Texas state line!

The first two weeks we have been here, Frankie has had a pediatric appointment, (which was needed for therapy scripts in Texas,) a dentist appointment, neurology appointment and an evaluation for physical therapy. We will see the orthopedic surgeon, the orthotist (to get her fitted for braces) and an opthamologist in the next few weeks. We also have our occupational therapy and speech evaluations coming up. Bizzy bees!! We are trying to get all medical appointments out of the way before school starts and we are coming along just fine! We also toured the school we wanted to enroll Frankie at and we now feel comfortable it will be a good fit.YES!!!

We are proud to be in the no-cavity club after her 4th dentist follow up!

I have to say the appointment with Dr.Jan, our new neurologist here has been the highlight of our arrival so far...at least for me. Of course, visiting with family here is priceless, but finding a neurologist like Dr. Jan has been a blessing. She just opened up a practice here in Plano called 1CP place where she specializes in  seeing patients with cerebral palsy. I don't know of another neurologist that has specialized in a single condition but this one does! The fact that she is only minutes away from our home is even more amazing.Patients are flocking here from all over just to see her. Why? Because she herself has cerebral palsy and she knows first hand what it's like. She spent over 2 hours with us during our initial visit. I left there SO hungry for lunch and ready to leave and she asked..."Do you have any more questions?" HOLY, WOW! I'm not used to being anxious to leave a doctor's visit! I usually beg for more time. All my questions were answered and then some. I didn't have to write down notes during our visit because they were all transferred to a portal. I took a few photos of Dr. Jan stretching out Frankie's foot (I need visuals for our therapy homework,) and I had to take one of the new duo smiling from ear to ear...We will be seeing her every 3 months and am certain we are in the best hands.

The past few weeks have been crazy...I'm not even going to sprinkle sugar on that. But! I realize the chaos is just temporary, and some of it may just be made up in my own little head. I have had my moments where I feel like I'm overwhelmed, but this is when I have to step back and make time to be alone and thank God for all of my blessings. Mark granted my wish to escape one evening and took Frankie to her cousin's house. That one day away definitely recharged my battery. I was able to bask in the sun at our neighborhood pool and read a book. As I was walking back home from the pool, I heard the sounds of cicadas & some blaring Mexican music from new homes in the area that are under construction. All of a sudden, there was an extra spring in my step...I really feel like I'm home now, and I love it!

Baby steps...it's OK!

Another month has gone by since my last post and a lot has happened. We have put our house up for sale because Mark finally got a transfer back to Texas with his company. We are beyond elated! We have been waiting for this for years and it's finally happening.To top that off, we found our new home after only 2 days of house hunting! Now for the hard part...we just need to sell our house!

Moving to Texas is a dream come true but I'm sad to leave our friends and specialists behind. I will miss the beautiful scenery here that we are surrounded by.I have taken longer routes to  places just to take in the beauty of this area that we now call home. I step outside more often to feel the cool Virginia breeze.I have also found myself hugging people tighter because I know our time here is limited.On the other hand, I have to admit this whole moving thing has made me a tad anti-social. Deep down I didn't want to tell my friends here that we were leaving because I feared they would distance themselves from us. I know I shouldn't feel that way, but in the past I have experienced people acting different when they know you won't be around for much longer. Thankfully, this precious bunch of friends that I have here have been SO sweet and kind after knowing we are moving HOME to be closer to our family.I feel so blessed for that.

Almost forgot! This blog is not about me, it's about Frankie's progress with hemiplegia. Here it is! This month I received a progress report from her school that she attends with mainstream students. After reading the first section, I wanted to throw up.I realized how far behind we are. I later read the part of the report where it grades the student on social skills. OH MY! Frankie's teachers had such wonderful things to say about her. My nausea quickly subsided and turned into a huge grin. I felt so proud and comforted to know that other people recognize how happy, motivated and persistent our little girl can be. All the other stuff (writing her name, putting sets together, etc..) can all be learned. A personality can NOT be learned. Yea, we have a few things to work on, but we can and will accomplish our academic goals!

This Spring we had our follow up with Dr.Romness at UVA. Frankie could barely walk during our appointment because of a growth spurt. Her balance was way off. During a growth spurt, the bones grow faster than muscles which makes the body ache and in our case, can limit movement. Dr. Romness recommended a huge, hinged brace for Frankie's right foot thinking that it would improve her gait. He also recommended an intensive physical therapy program. Huh? I had never heard of an intensive PT program. It's kind of like a boot camp for 2-4 weeks of intense therapy that includes stretching, gait training, etc...

The following business day I was researching places in Texas that had intensive PT programs and we were off to the "Brace Place" here in Fairfax to get fitted for the ha-yuge brace that was recommended. I hesitated because I really didn't feel that Frankie needed it. After all, Dr. Romness observed her gait when she could barely walk and I knew this was temporary. After the casting appointment (photo below) and being told how heavy the brace would be, I called the Brace Place and told them...STOP! Please don't continue with the casting. Frankie doesn't need it. Here I am, faced with another decision but I feel it was the best one.Go with the mommy gut..right?

At PT and OT, it was time for our annual evaluation. Frankie's grades were right below average BUT!!! I was reminded to not look at the grade but to look at PROGRESS. Frankie took the Peabody test. I was in the room and was so amazed at how she can cut with scissors, holding the paper with her right hand! I was also impressed at how she could stack several blocks without them falling.I can't wait for her to beat me in Jenga. =)

A few weeks ago, we registered Frankie for Top Soccer here in Loudoun county and she loved her first practice! Sadly, she won't be able to make another practice for a while...why? Well, Frankie had a little accident at her Aunt & Uncle's house in Texas on April 28th...Mark's birthday. She fell off a step and twisted her right ankle. She was in excruciating pain! She wouldn't let us even touch her leg or foot. We had X-rays done at an emergency clinic and nothing seemed to be broken.There was no inflammation or bruising so I thought this was a good sign?I had been told that sometimes fractures don't show up for weeks, even months so we couldn't rule this out.

The remainder of our week in Texas was tough but thankfully we were surrounded by family. Frankie was unable to stand but she was still her own happy self.
We flew back to Virginia on Sunday and she was still having a hard time bearing weight on her right leg (which happens to be her affected side.) Anxious Mama couldn't accept this. No way.I needed more answers and a crystal ball that could tell me when she would heal. Well, I know I couldn't get the crystal ball, but I took Frankie to a local orthopedic Dr. yesterday and they did more X-rays.They did one on her tibia, which they didn't do in Texas. Nothing seemed broken but the Dr was convinced that there is indeed a fracture in the foot area, not a sprain. The Dr.proceeded to tell me to stop googling after I TOLD her and insisted that she sprained her ankle. Yup. I convinced myself that she had a ruptured or torn ligament in her ankle. I was worried that she would cause more damage if I continued to encourage her to stand and walk. The Dr said to encourage her to walk, as long as she tolerates it.

The next few weeks will be tough, but we will be just fine. Our love tanks are full after seeing Nana, Poppy, aunts, uncles and cousins. I was also able to have a girls' weekend with childhood friends that will continue to keep me fueled for a long time!

Here is Frankie today....We are back to baby steps, but she will be running again in no time. We will continue to ride the wave!

Growing Pains

So much for me saying "I'm going to post on my blog every month." One of my resolutions this year was to follow through with what I say I'm going to do. I guess I'm not off to a good start. I'll try to change that.

We are so happy to finally see the sun and milder temperatures.Frankie had a blast in the snow though. She absolutely loves to walk in it. We built a snowman for the very first time last weekend. Frankie observed patiently and was so happy to see our little Texas snow-lady, even though she wanted an Olaf.

If I could have background music for this post I would choose, "That's just the way it is," by Bruce Hornsby. This week started off a little rough. On Tuesday morning, I stretched Francesca's leg/foot out as usual while getting her ready for school. After doing so, I put on her braces and shoes. She stood up and could barely walk.At first, I panicked. Then, I remembered that something similar happened to her when she was 3.I asked her if anything hurt and she said "No." I checked for blisters and redness on her foot and didn't find anything.I quickly called Mark and emailed Jill, Frankie's physical therapist.

My first thought was to keep her home from school that day, but she was in a great mood (despite getting over a cold)and she was able to walk with a limp, for lack of a better word. Her gait is very distinct anyway, but now it seemed like she was injured. I drove her to school early and spoke to the teachers explaining Frankie's condition.They assured me she would be ok and that the kids weren't going outside to play that day...she would be pretty sedentary. I asked them to call me if she seemed like she was in pain.

The following day I had two physical therapists observe her gait and we all agreed that it appears she is having a growth spurt.This is common for children with hemiplegia during pre-adolescence. As their little bones grow, spastic muscles become tighter and tighter. Many kids are in excruciating pain. Some children will get Botox (Yes, the same stuff that helps with crows feet) to relax the muscles and allow for more range of motion.Massages and constant stretching are suppose to alleviate this pain and help stretch out the muscles that need to catch up with the growing bones they are attached to. We have a pending appointment with our Orthopedic Surgeon at UVA in two weeks and will hopefully get more answers soon. He may suggest bracing her at night. I'm still waiting on a call back from them to move our appointment sooner.For now, I'm using essential oils during our massages and stretching her like crazy!

On a brighter note, Frankie has been making huge strides in the two preschools that she attends and in therapy.One of our biggest goals this year has nothing to do with her affected side. (right side.) It has to do with her left hand.In the mainstream school that Frankie attends, they are teaching the students to write their names.Yes, in preschool! I panicked when I saw all the other kids writing their names so well. So, what did this Mama do? I darted to Barnes and Noble to try to find workbooks and things that I can do at home to help Frankie write her own name.I have several apps on her IPAD to help with handwriting as well.

The workbooks are helping and so are activities involving fine motor skills. I truly believe Frankie was born to be right handed but now she's having to use her left hand to draw,color,write, etc...Therefore, I think it's even more challenging for her to have the coordination to write with her less dominant hand. We are starting by tracing lines...next, we'll attempt to work on writing her name.It's funny, I find myself trying to jump to a goal so quickly.This is a prime example.I suppose it's partially due to peer pressure & social media pressure? I have to stop and tell myself...HEY, CHILL OUT! NOT ALL CHILDREN DEVELOP AT THE SAME TIME! I will add that I'm pretty stinkin' proud of her though for writing an F for Frankie a few weeks ago!

Private Physical Therapy has been going great except our angel, Jill (pictured below) retired a few weeks ago.She helped teach Frankie how to walk amongst many other things. She was our biggest advocate and assured us Frankie would learn how to walk without a walker, which was recommended by our Physiatrist. She was right! We are very sad to see her go,as you can see in Frankie's long face; but, we'll remain in touch with her indefinitely.

A couple of milestones we have made these last few months are climbing on a chair AND jumping!! We hope running is in the near future...I'm confident it is.We now have a new private PT, Amanda, who Frankie and I have known for a while. She has such a soft and sweet disposition....what a perfect match!

Frankie & Amanda

In OT, Frankie continues to work on grabbing things with her right hand. Weight bearing is very important too so we do a lot of activities where she has her right hand on the floor, and she reaches for toys with her left hand.(pictured above) We continue to do ESTIM at home to help activate the muscles in Frankie's right arm and she's been very tolerant...as long as she has play-doh to play with.

We are still blessed to have Catherine, our private OT working with Frankie.I praise her because it takes A LOT to be an occupational therapist. You have to have a lot of patience.A LOT! This past month we have worked on many things including side stepping and fun yoga poses.We recently painted an Easter egg on paper with righty. The fun never stops!

Francesca continues to get PT, OT and Speech at her IEP school weekly.She adores her therapists there.Unfortunately and fortunately, we were told that Frankie may not qualify for the IEP program next year. This means she will be mainstreamed 100% of the time during the school year. There will be a resource teacher assigned to her and she will be pulled out of class for PT, OT and Speech.I say this is fortunate because this proves there has been significant progress, but unfortunate because I still see a few developmental delays...I know we'll get there.

So, our journey continues. We are just riding the wave! We have our good days and we have our "blah" days, just like everyone else. Every day I choose to have a good day...it's my choice. If something is on the verge of bringing me down, I try to stay positive.I can't tell a fib though...it's been rough week seeing a lot of our progress disappear overnight. Frankie wants to chase Paco and play outside but her legs aren't allowing her to. It's frustrating.Growing pains are NO fun! Gotta keep our chin up...it WILL get better! I would now insert the WHIP IT song by Devo. =) Crack that whip!!!

My point of creating this blog is to update family and friends on Frankie's progress with Right Sided Hemiplegia.I hope to help other parents and/or children that are on a similar journey. I have the most incredible friend here, Danielle, who has a daughter with a similar diagnosis and has helped us so much with her blogs and our long phone chats. She has helped pave the path for us when it comes to therapy, orthotics, etc... I'd like to pay it forward and help others that are on the same cruise ship we are. Also, writing a journal/blog is somewhat therapeutic.I'm going to try to do this once a month. I hope that someday Frankie will read through all these posts, pat herself on the back and let this empower her to be stronger, wiser and to never give up on her dreams!

Frankie just turned 4 and has been in preschool since she was 2. This Fall, we started the school year a bit late because of the CIT program at UVA. She is now going to two schools. "School One," is a public school that provides an awesome IEP program. This program includes having a Physical Therapist, Occupational Therapist and a Speech Therapist work alongside a teacher and assistant.I am so grateful that we have these services here! This is the 3rd school year Frankie has an IEP. Her other school, "School Two" is a private Christian school where she learns & plays with mainstream kids. Student/teacher ratio is 15-1.Last year, Frankie's preschool teacher encouraged us to to get her into a mainstream classroom setting this year to be challenged more.I was a bit apprehensive since Frankie needs a bit more assistance than most kids her age with physical tasks.  For example, most preschools require a child to be potty trained. Yup, we hadn't perfected this MAJOR milestone. Cognitively, I hoped Frankie was where she needed to be, but her speech delay and motor skill challenges have been concerning as well. Would the teachers at "School Two" be able to tend to her if needed? Would they help her open her right hand up to wash her hands? What if she had a potty accident? Would they understand her lingo? What would Frankie do when all the kids are climbing up the ladder on the playground?…twiddle her thumbs?  Oh, the list goes on.I think this picture below speaks for itself. It was taken right before the Halloween parade at "School Two." She's our Super Girl and has made friends with the entire class!

Today, I have to say that both schools are providing the services I feel Frankie needs to thrive.We continue to go to private PT and OT outside of school, once a week.Frankie is no different than other children and adults…to achieve a goal and to continue to progress, it takes work!

About the picture below...What? Our neighbor gave Frankie a scooter last year and it's been collecting dust. I felt like giving it to someone else but deep in my heart I knew that someday Frankie may be able to use it. One of our angels, Jill, whipped one out at therapy this week and WOW…Frankie was doing a great job controlling this thing!

What an awesome month this has been. We leave for UVA again in a week for a follow up CIT appointment and to pick up our E-stim machine.Can't wait to see our UVA team! So pumped! I will learn how to use our newest "prop" and the parameters on the machine will be set. We will be using it daily, I'm hoping.

Wishing all a Happy Thanksgiving! We have so many things to be thankful for this year. I'm sad we will be away from family this year, but so thankful to spend it with dear friends.