It's OK to be the goose!

So much has happened these last 2 months. Frankie and I were able to spend close to a month in McAllen, where my parents, brother and sister in law live. Mama Didi and Papa needed extra care, so all the sibs took turns going down there. Frankie LOVED putting on her Doc McStuffins lab coat and playing doctor. Thankfully, she was also able to spend time with her cousins Zach and Jaqueline, since my oldest sister's "shift" overlapped with mine. =) 

During our precious time there, we were very fortunate to have a summer camp that Frankie could attend. My childhood friend, Taryn owns a dance studio where the camp took place. Every day, I would drop Frankie off for 3-4 hours to play with 10 other children her age where they danced, played games and did arts and crafts. Taryn’s daughter, Ellaryn was in the camp as well. Frankie and Elle became very good friends and had many play dates together.

One day during camp, I decided to pick Frankie up early. While peaking in the front door, I saw that all the kids were playing duck, duck goose. I watched as the children chased each other after they were called the goose! Ellaryn finished chasing a girl that she named goose and she was able to tag her before she sat down! So, Ellaryn had another turn. I was thinking to myself…If Frankie is goose, I hope she knows how to play this game and I hope she is able to get up and walk fast! Sure enough, Ellaryn tapped Frankie’s head and yelled, “GOOSE!” I gulped. Frankie took a while to get up, but she did. By the time she got up, Ellaryn was still close by running in place! She was waiting for Frankie to stand up and then ran very, VERY slow so that Frankie could catch her.  Tears rolled down my face. I had just witnessed a young child having empathy for another. I wanted to run in there and give sweet Elle a big hug and thank her for being so sweet. I waited until the game was over and told her mother, Taryn what a precious angel she is raising. I don’t believe empathy can be taught though. I think it comes from the heart and soul.

After returning home from McAllen, we had an appointment with Dr. Jan, Frankie’s neurologist. Frankie had been having more “daydreaming spells” during our trip. Were they absent seizures, or was it simply daydreaming? It’s so hard to tell. During every appointment with Dr. Jan, Frankie has to do the cat walk on a runway, photo below. It's great because these walks are always videotaped so we can track her progress. After a thorough assessment, Dr. Jan was concerned with Frankie's hip rotation and no weight gain. So, we left her practice with a script to up Frankie's seizure med, one to see an orthopedic surgeon and a phone number for a dietician.

This past week, Frankie started her CIMT camp in downtown Dallas. (Constraint Induced Movement Therapy.) For three weeks, two hours a day, they will be casting Frankie’s stronger arm, in the hopes to get her to use her affected arm/hand more. Good old neuroplasticity!! We are asked to keep the cast on at home as well.... at least 3 hours a day. We did CIMT at UVA a couple of years ago and Frankie did extremely well. Here she is showing finger isolation with her right hand after day two this week. Thank goodness it's the index finger!! ;) She also played a mean game of angry birds!

I can't get over how this Summer is flying by! Kinder is right around the corner. We’ve been trying to work on reading and writing to help prepare us. Frankie has been doing great with reading. She knows how to read over 70 words or so, or maybe she has memorized them? At night, she doesn’t want us to read Knuffle Bunny or her fairy tale books, she wants us to play with her sight word flashcards. As far as handwriting goes, we recently got a script from Dr. Jan stating that Frankie needs to start learning the keyboard at school. We have halted our handwriting tutoring for now, but we will still working on it at home. For now, we need to introduce the keyboard since this will more than likely be her primary means of writing at school. A part of me is a little sad about this. Having a keyboard is just one more thing that will make Frankie “different” than her peers. But I’m very thankful that this resource is available. 

The latest specialist appointment we've had was with our neuro psychologist earlier in the week at Children's House. Dr. Beatle is amazing! We went over Frankie’s results from an evaluation we had a month ago. I’d like to keep most of our results private but I will say that they were very eye opening. I have to remind myself that our little girl can overcome any challenge and we have to keep pressing on with what we're doing. It’s definitely going to be a lot more difficult for her to learn than her peers; however, this Dr has given us specific ways to modify teaching methods both in the classroom and at home based on her challenges so that she can learn at her highest potential.

Shifting topics...TGIF! Frankie had a great time in the rehab pool today. Where there are toys and water, there is JOY! She was the youngest gal in the pool, but didn't mind one bit! I actually saw a couple of young men who appeared to be injured war vets in the pool next to ours. Even if they weren't, it reminded me how life can change in the blink of an eye and to be grateful for every precious moment we have.

I have to end with this. This past Saturday, Mark, Frankie and I were sitting at the table eating dinner at home. All of a sudden, Frankie started chewing and screamed so loud!! I thought she had bit her tongue! Mark and I both looked at each other and before we could ask her if she was OK, she said, “We forgot to pray!!!” We both laughed with relief. I melted with pride and joy. After spending lots of time with my sister Cici and her family in McAllen, she picked up on praying before every meal, like they do. Warms my heart! Thank you, Cici! 

My biggest lesson learned since my last post is that it's OK to be the goose....even if you're not prepared to be. Others can lift you up, when you can't do so on your own. 

An angel within....

What a month this has been! Wish I had a happier post. I gotta keep it real.

I was so happy to have made my girls' trip with my childhood besties a few weeks ago at the lake.  It's an annual trip and one that I look forward to every year. This past one marked the third time I’ve left Frankie overnight. In retrospect, I think this vacay with my soul sisters gave me my armor for what was about to happen.

The following week went well. At least Monday did. At The Handwriting Clinic, www.thehandwritingclinic.com on Tuesday, Frankie was concentrating while asked to do certain tasks but I could tell she wasn’t herself. During a tracing task, she stared off to the right and her eyes were locked. I quickly knew something was wrong. I said, “Jan…she’s having one!!” We counted 10 seconds before we could get Frankie’s attention. Right after that, Jan acted like it was no big deal and tried to get Frankie to do another task. Meanwhile, I was trembling and grabbed my phone, stepped outside and called our neurologist. Frankie was able to proceed with her session and, thankfully were were able to get in to see the doctor the next day!  Jan, who is our tutor and a decorated OT, had emailed me later that day to check on us and explained to me that the reason why she was so calm was because she could sense Frankie’s anxious reaction to my panic. I was so grateful for this. 

The next day, I had lunch with some friends at a yummy place called Whiskey Cake before I had to go pick up Frankie early at school for her doctor’s appointment. I contemplated telling my friends that I hope they don’t shy away from inviting Frankie over for play-dates with their kids because of her recent seizures. I just wanted to make sure they are informed and not afraid. After telling them, they all agreed that the seizures wouldn’t deter them from being around Frankie. I was touched. 
I had to skip out of our lunch early to pick Frankie up at school so that I could take her to her Neuro appointment at 1CP Place www.1cpplace.com. During our visit with Dr. Jan, Frankie was asked to stand against the wall to measure her height. She started to stare off. I said, “Dr. Jan…she’s having one!!” We both tried to get her attention and couldn’t. This one lasted for 10 seconds as well. Her eyes were fixed to the right. Crazy thing is I was ELATED that Dr. Jan was able to see this with her own eyes at her own practice. She confirmed this was indeed a seizure. After a thorough assessment, Dr. Jan upped Frankie’s dose of Keppra quite a bit. She also recommended serial casting and custom SMOs. I had been ordering over the counter orthotics but they just aren’t cutting it anymore!Frankie's growing feet need even more support. She continues to wear her custom noodle brace which has really helped her to gain strength and muscle in her soleus. (That's a fancy word for calf muscle.)

On Saturday, April 23^rd, I invited a couple of friends over for dinner. Around 1pm, I lied down to rest in the hopes that Frankie would also since she got up early that morning. I knew she would probably be up late that night since she had friends coming over. She ended up taking a nap which she rarely does. As soon as she woke up, she looked pale and like she wasn’t feeling well. She didn’t utter a word, even after I asked her several questions. She had goose bumps, so I took her outside to get some fresh air and to sit in the sun for a few minutes. She still looked different and didn’t say a word. We could tell something wasn’t right.

Next thing we knew, Frankie had gone number one in her pants while sitting outside. Mark quickly picked her up and rinsed her off upstairs. The last time she had an accident was when she was 2 years old. My friend had just made it over and I told her Frankie wasn’t feeling well. Next thing I knew, Mark yelled from upstairs, “Start the timer!” I knew this meant SEIZURE. I quickly told him I was going to pull the car out and told my dear friend, Mariesa to stay put. I grabbed our Diastat syringe that we keep in our cupboard which is to be administered rectally if a seizure lasts more than 5 minutes. If a seizure lasts that long it can become life threatening.

There we were, off to the same ER we have been to 3 times now. Just before pulling out of our driveway, we administered the Diastat in the hopes of stopping the seizure instantly. The five minutes had lapsed. I put the pedal to the metal! There were people in golf carts going so slow in our neighborhood. I wanted to honk and roll down my window and scream so I could go around them but I had to think of everyone’s safety, not just Frankie’s. I was trembling but still able to remain some what calm.At this point, Frankie was making a funny noise breathing. She was slightly stiff but completely unresponsive while Mark was cradling her on the front passenger seat. Yes, we didn't strap her in the car seat but know now that we have to find a way to do so. During the LONG ride, Mark kept telling me to pay attention to the road. I asked him to record our baby's face/body with his phone and he managed to do so. This is vital info for Dr. Jan so she can study facial gestures and body twitching to determine what type of seizure she was having. We are pretty convinced it was a grand mal. Her first. And damn, hopefully her last.

At the ER, Mark and I sat together waiting for Frankie to wake up. Her seizure had stopped by the time they got her in the room. I had emailed Dr. Jan right before the seizure asking her what we should do. As soon as we got to the ER, she texted me and asked how she was doing. She had just gotten off a plane. After several texts and phone calls, she asked me to have them check Frankie for a UTI. I have to say we are SO DANG grateful that our neurologist genuinely cares and is available when we are having an emergency. Why test for a UTI? A UTI may possibly have been a trigger since illness is a huge one for seizures and is also a sneaky infection that some kids may not know they have.The only problem with getting a urine sample was that Frankie was still post-ictal and sleeping. After a couple of hours, she started to wake up and began throwing up. After another 2 hours and without a urine sample, we were able to go home since Frankie came back to baseline, cognitively.

During our time in the ER, I had a text thread going on with my brother and sisters letting them know what was happening. I didn’t want to tell my parents anything since they were not feeling well at the time. They were all so supportive and praying hard! We felt the prayers!!I thank medicine and divine intervention for helping us through this last one.

I scheduled an appointment with Frankie's pediatrician the next day and they tested her for a UTI. It was negative. After that, everything has been great! It's been a nervous waiting game to see if there will be more seizures during these next 2 weeks. It takes 2 weeks for a dosage increase to take affect.Thankfully, Frankie has been doing awesome in school and in swim lessons. She's definitely back to her precious self. She hit another milestone too! She lost her first tooth while we had lunch with Nana at Schlotsky's! The tooth fairy came for the first time and Frankie was tickled.

Now that Frankie was feeling better, we were able to tackle some appointments. Frankie went to Hanger Clinic www.hangerclinic.com to get fitted for the custom SMOs that Dr. Jan recommended since the ones she is wearing now aren't giving her enough support. We scheduled this appointment a couple of days before she had to be serial casted on her right foot. The serial cast has to stay on for 3-4 weeks and is supposed to help increase the range of motion for her foot. She can only flex it a little past the neutral position. The more flexibility she has, the stronger her gait. The stronger her gait, the more likely she is to run. Frankie tolerated her cast well the first two days. We were warned that she may have sleepless nights because of cramping. The following day, she was crying in so much pain, so I felt the need to remove the cast thinking a blister was forming. I felt a little guilty because there was NO blister after it was removed. I hate that we had to give up so soon but I didn’t want to take the chance of Frankie having blisters or numbness. My guess is we will attempt this again next week.
 SMO casting

Serial casting

 

So, orthotics....CHECK! PT, OT and ST are going great. Frankie's speech is really taking off! Her vocabulary has expanded tremendously and her words are becoming more clear and easier to understand.Last week, we were sitting on the couch and out of the blue she said, "A girl at school told me to run. Outside. I can't. I fell and look. I have a boo boo." She pointed to her knee and I saw some redness. I grabbed her hand and said, "Frankie, you will be able to run VERY soon. You are getting stronger every day! You will be able to run very fast...you'll see!" I quickly wrote down what she had just told me word for word so I wouldn't forget the conversation and could also document her sentence structure, etc...Meanwhile my insides were a mess. I was a little heartbroken about what she told me but at the same time, I was so very proud of her for opening up to me and to be able to articulate clearly what had transpired at school.

Moving forward, we continue to ride the wave! I often wonder how you parents that have multiple kids are able to juggle everything! We would have loved for Frankie to have a sibling but I don't know if I could have handled it? Being the only child, I am so thankful she has learned to play alone and been content doing so. There are many times where she talks to herself and has long conversations with her imaginary friend(s). I suppose this is normal.She can definitely see things I can't. Here's how I know this.

This past October, I booked our Perez family reunion at a hotel on the river walk in San Antonio. I met with the catering person the day before the function with Frankie in tow and my sister, Cici to finalize the dining room set up. We all walked into the dining room and Frankie said, “Look at the baby!” She was pointing to these tables that were folded up against the wall. Cici and I didn’t think too much of it but Frankie kept pointing and saying, “look!”  We all walked closer to the tables and she kept pointing and we saw nothing. I glanced at our caterer that works at the hotel and she looked like she had just seen a ghost. I giggled jokingly and asked her, “Is this place haunted or something? “ She said it was!  Spine chilling! I had NO idea when booking this venue that this hotel was known to be haunted. Had I known that, it would have been the LAST place we would have considered. My hair was sticking up and we all started smiling nervously.

 

I know our little girl has a guardian angel and many people that pray for her, which is why I feel she is protected. My spiritual faith is growing more and more and with that, I myself can see more things that I used to be blind to.I also feel more uplifted in times of crisis, especially after starting to read this book called "Fight Back with Joy" that is part of a bible study.

I'm closing with this quote I recently found that I LOVE. Feeling so blessed this Mother's day.

Children often have imaginary playmates. I suspect that half of them are really their guardian angels. ~Quoted in The Angels' Little Instruction Book by Eileen Elias Freeman, 1994

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