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.)
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 23rd, 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
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.
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
