A little bit of Country…

It has been exactly a month since we last posted, and as much as things have changed, so many things have remained the same. 

Please let me get out my twangy guitar to regale you with my sorrowful song… 

This month has been a bit of a jumble for us. I lost my job back in June, and though it was devastating and worrisome for me, I now have the mindset that it has given me the gift of time. I have finally been able to work on that house I was complaining about in the last blog. I have also been able to spend some time with my family, which has been a huge blessing. Dates with my husband? Unheard of until this gift was dropped in my lap. I am not sure if I can adequately express in words how much I have been missing him. Suffice it to say, reconnecting has been glorious. 

We have also attended numerous appointments, therapy sessions, information sessions and check-ups with Pepper. 

Pepper is developing slowly, but she is progressing, which is key. To have her regress, or for her to suddenly lose a milestone would be not only devastating for all of us, but it could also mean bigger problems for our little angel. Thankfully, her therapists have reported to us that they see improvement in her development. At 21 months, Pepper is still not crawling, or talking, or pulling herself up into a standing position, but she has much better muscle tone and core strength, and her balance is getting better as well. She is still saying “mama”  and sometimes throws in a “dada” or a “hey” for good measure.  She’s not reciting Shakespeare or anything, but we couldn’t be prouder of our little chatterbox. 

On a clinical note, Pepper has been seen by the ketogenic diet clinic at Sick Kids and has been approved. She is currently on a wait list, and needs to have a swallowing assessment before she can begin. We need to be sure that our little trooper doesn’t aspirate any fluids when she is drinking. We don’t want her to suffer severe pneumonia or irreversible damage to her lungs.  We have learned about the many different diets prescribed by the clinic, and how they may possibly help Pepper to become seizure free. This diet requires dedication and perseverance in abundance. If this blog is a testament to anything, it should be to the fact that we have both in spades.  The diet basically changes the way her body metabolizes energy. Where a traditional diet will consist of approximately 55% carbohydrates, the ketogenic diet is based on 90% fat, 6% protein and 4% carbohydrate. Sounds delicious, I know. But it has been proven to be effective. We’re praying for a miracle here, and are hoping that this will be our answer. 

Physically, Pepper is now having daily seizures. Previously, she would have a break of couple of days without seizures, but now she is guaranteed at least one, and sometimes two or three. She is four seizures away from ~500 seizure count and we still are no closer to determining the cause. It’s heartbreaking and it’s hard to feel comfortable taking her out of town with so much unpredictability. Even day trips can be stressful. 

Emotionally, it has been a struggle to keep my head above water. I have had periods where I have wanted to disconnect entirely from my friends,  from the internet, from anything outside of my husband and children. My head keeps telling me, “retreat, retreat!” I have also found myself lacking the energy I normally have. I know it’s bad when I am walking in a crowd and I do not pick up my pace to cut through it. (I am a commuter to the core. I walk fast, and with purpose).  Good thing I still have my walking shoes though, because in October, I will be running in the Toronto Scotiabank Waterfront Marathon to raise money for Epilepsy Halton Peel Hamilton, an association that has offered us support and allowed us to meet some really great people. In October I will run for Pepper, so I best be lifting myself out of this funk and onto a track. 

As much as things have changed however, so much remains the same. Our little glowing heart Canadian girl has been keeping us busy and happy. Pepper continues to beam sunshine into our hearts on a daily basis.  A little bit of Country, but a whole lot of Rock and Roll.