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 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
