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!
