SOAR!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

California Dreamin'

WOW! It has been almost 5 months since my last post. One of the reasons for this is because we have had A LOT going on in regards to Frankie. Every time I wanted to post here, I hesitated because there was so much to say and I didn't want to re-live some of the things that we were going through. Well, I can't delay any further.I love posting here because it's therapeutic, it updates friends/family on Frankie's progress and it may help others that are going through a similar journey.

So, Summer ended and Frankie started kindergarten. Even though she attended preschool the past 4 years, this new kinder environment is very different in that her class is much larger and she doesn't get the attention she was getting before. We expected this, but didn't think it would be this tough. Frankie would cry every night and every morning about not wanting to go to school. She would cry about not wanting to eat in the cafeteria, cry about the noise there, cry at the thought of recess,...the list goes on. We struggled a lot with trying to calm her down at home. I continued to contemplate. Is she at the right school? She has to share a classroom (more like an open room) with 1st graders. How is she able to pay attention to her teacher? The student teacher ratio is 1 teacher for 24 students. Does she belong in a mainstream classroom? Should I consider homeschooling? I've been trying to figure out our options and even hired our Neuropsychologist to attend our last ARD meeting as an advocate. 

Thankfully, the at-home crying about not wanting to go to school is getting better. I feel like we have a great team that is trying to help us determine ways we can create an environment in which she can learn at school at her fullest potential. One thing that hasn't helped matters is that Frankie was getting sick frequently so she has missed several days of school. 
Let's see...strep a few times, double ear infection, upper respiratory infection.....the list goes on. I'm guessing being sick is not abnormal when school starts;but these bugs she was getting were non stop and relentless. Not only did we miss out on school days, we missed out on a lot of social and family functions. 

On a brighter side, Frankie recently got 2 As on her report card....in PE and Music. ha! I remain very grateful. I'm grateful that she LOVES music & PE and that she did ok in reading. I say OK but that's compared to her peers. She loves her teacher, is willing to learn and I am determined to make sure she has the resources to do so.

A week after school started, Frankie had a princess birthday party. The big 6!! She was surprised to see Princess Ana show up at our front door and had a blast with all her sweet friends. This was definitely a great buffer in regards to brighting up her mood during the first tough weeks at school! 

In terms of health, when Frankie becomes ill she is more susceptible to having seizures. These past few months, we have found ourselves dealing with a few ugly Esses (my made-up word for seizures.) Not big ones, but small ones. We've also had several pediatrician & ER visits over the last few months. Because of all this, our neurologist encouraged us to get a follow up MRI of the brain and an EEG. She ordered the MRI to make sure the porencaphlic cyst in Frankie's brain has stayed the same, since our last few visits with her didn't go very well. Frankie hadn't gained weight, not even an ounce in over a year and she didn't seem to be progressing at school. And even more, she wasn't cooperative during our follow up screening tests so we knew we had to follow through with getting this done.  
Dr. Jan ordered the EEG because of the recent seizure activity. EEGS help detect the type of electrical activity in the brain and it's location. This would help determine whether we need to add another seizure medication. Do I want this? NO....new meds=new side affects and some can be ugly. BUT, if  we need to add another med, we NEED to. We'll deal with it.

We didn't walk out of Dr. Jan's office with just those 2 scripts! She also recommended a nutritionist because she was very concerned about no weight gain and we were given two more referrals for opthamologists since we suspect Frankie may have visual field cuts.

My first phone call was to a nutritionist, Suzanne Barker. Our first meeting with Suzanne was at Market Street...a fantastic store close to our home. It's kind of like a Whole Foods in that they have a wide array of vitamins, organic and gluten free foods. After our first meeting there and taking TONS of notes, I was about to drive off and I totally lost it. I had this immense feeling of guilt! HUGE! I learned SO very much in those 2 hours my head was literally throbbing. How could I have been feeding Frankie the things I was giving her? Why didn't I insist in seeing a nutritionist sooner? 

The day after I met Suzanne I quickly went to Sprouts and Whole Foods (spent a fortune) and bought supplements and gluten free items that I was convinced would help us. Since our first meeting we have decreased our gluten intake significantly. We are also "eating right for our blood type." I read this book YEARS ago. I continue to be a believer in that there are foods that agree with you and foods that don't, depending on your blood type. Frankie hasn't had chicken in 3 months, just to name one food we've eliminated. Happy to say that after our first month, Frankie gained 3 solid pounds!!And...her reflux symptoms were almost gone. AMAZING!!


So that was the easy appointment. On November 10th, we had our EEG at Children's hospital in Dallas and they asked us to arrive there sleep deprived. Sleep deprivation is another trigger for seizures so we know they wanted to see some action when placing all the electrodes on her head. They also wanted her to fall asleep because they can get a better picture of seizure activity when the mind is at rest. 

Frankie was a champ during the procedure. I was able to lay right next to her when her head was wrapped and electrodes were placed on her scalp. She kept asking me why we were there. I told her that Dr. Jan wanted to see a movie of her brain. She felt relieved in knowing there was a reason we were there, even though I don't think she fully understood the circumstances. 

During the procedure Frankie had to blow in this pinwheel for five seconds every 15 seconds to deprive her brain of oxygen. This was HARD TO WATCH. Thankfully, she was so compliant! I almost wanted to nudge her and say, "stop doing it!" To see this being forced was no fun, but I knew it was for her own good. They also kept flashing lights over her eyes since this is another trigger for seizures. We then tried to fall asleep (this at 10am) but couldn't....we got pretty close right before the time for the procedure lapsed. At that point, we were both thankful it was over and hoped they got ample info to make the EEG successful.

The MRI was done the following week on Nov 17th at Children's and it was a bit more nerve-racking. At least for me. I hate having to put Frankie under anesthesia. Mark, Frankie and I sat in the prep room at the hospital before the anesthesia was administered and she kept asking why she was there. She cried and I did too...but I kept turning around because I didn't want her to see me with tears. I suppose I was crying not because this is such a serious procedure, because it's not. I was sitting there thinking about the million questions she will have in the future, wondering what the results would be and how many other times she may have to endure this.

After what seemed like an hour of waiting, they told us they would only allow one person in with her right before she went under. I was full of tears so I asked Mark to go in with her.  This was a rare occasion! I felt mentally weak. I couldn't be strong for my own daughter! I feel like I failed her for not being the one to walk in with her but was SO thankful Mark was there, strong as can be.I guess some men ARE made of steel.

After a a week, the MRI & EEG results were back. MRI showed NO change YAY!! I was hoping that the cyst would miraculously be gone or that there would be no change. THANK you baby Jesus for this! The EEG results showed spiking during the procedure but no real seizure activity. This is good. Really, really good! Seizure med & dosage stay the same, at least for now.

After these procedures & a HUGE sigh of relief, we had our Winter Break. Christmas was here and we were so thankful to spend it with family. One of our favorite outlets is spending time at my family's ranch. Mark, Frankie and I spent a few days alone there and it was just what we needed. I'm thrilled that she LOVES it there as much as we do AND that she doesn't mind opening up the gates when we drive through different pastures. (I never liked that.)

As far as therapy goes, Frankie has joined a social group program with our Neuropsychologist, Dr. Beadle who we adore!  Even though we know Frankie is very social and plays well with others, we felt a program with Dr. Beadle would allow her more time to get to know Frankie. During this 5 week program, Frankie will explore a variety of social thinking topics such as group cooperation, following rules of conversation, regulating behaviors and emotions, and thinking about how others think. She is loving these sessions every Monday after school. Here they are below pretending like they are passengers on an airplane! 

Our private physical therapy, occupational therapy and speech therapy continue weekly at Our Children's House. Frankie loves all of her therapists and looks forward to going every time! In OT, we continue to work on strengthening her right hand.  She is trying to keep it on a grip for an extended period, like a chain on a swing. We are also working on bimanual activities and fine motor skills. Frankie's PT continues to try to strengthen her legs.In the photo below,  she is trying to stretch her calf muscles out and puts her on a wedge while playing ball. We continue to work on her gait since she tends to toe walk on the right foot. This is because of the spasticity on the right side. Thankfully, she's wearing her fancy noodle brace again in addition to her orthotics. This brace helps to decrease leg extension and should help her drop her toes when walking. "Heel toe, Frankie! Heel, toe!" That's what we continue to tell her. We are still waiting for the day that she will run. I guarantee  you though, she'll break those braces and haul tail like Forest Gump did if she needs to!!

Over all, we continue to ride the wave! I am so grateful for a fantastic team of doctors, teachers, therapists, family and friends in our village. Frankie is tolerating school a little bit better now. She made a great friend in her class, Olivia who is so precious! I can't get over how chatty & giggly they are when they're together. They "get" each other and I couldn't be more thankful for that.

I leave with this. This past Saturday, Frankie's big sis, Abigail visited us on her way to California. She drove many miles out of her way to see us before she arrives there to pursue an acting career. This, after graduating from college early as a Theatre Performance major. Abigail has cerebral palsy as well and has overcome so much. She is truly an inspiration to us and countless others. Thank you, Abigail for reminding us to always dream BIG. Even when we have setbacks.We send you off with love & faith in knowing you are going to ROCK it in Cali! Don't forget us little people!!! Your California dreamin' has come true! 

Last quote by rikki rogers

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