Friday, July 27, 2018

A New / Another Diagnosis

A couple of months ago, Brennen started going through what we thought was a phase of fussiness - irritability, fatigue, and at times just being a bit of a jerk. I know, that sounds harsh, but that's really what it seemed like. He had become a terrible teenager. For several weeks, he was difficult to settle and just wasn't his happy ol' self.

Also around this time, it seemed like he was having more seizures than usual, mostly at night, and they were bigger, lasting longer than normal, and they were scarier for us. Brennen has always had seizures, and we have tried a number of different medications over the years, but they have never really been well controlled.

Around the end of May, we made an appointment to see our pediatrician, just to have him looked at and to rule out anything really serious. Of course, any time Brennen shows signs of discomfort, our first thoughts go to his back or his hips. He has had some major work done inside his little body, and I have a constant fear that something is going to go wrong with the instrumentation one of these days. Andrew and I are always checking for protruding rods and screws, and while we have been assured that everything is where it's supposed to be, I know that things can slip. His x-rays that day looked good, so there was no issue there, but we got in to see the orthopedic surgeon just in case. While chatting with us, she noticed that Brennen was making some slightly unusual eye movements, and she questioned whether or not this could be seizure activity. She ordered an EEG, and we rushed over to have that done right away.

Andrew and I sat with Brennen for over an hour and watched as his brain's electrical activity was recorded on the monitor. Brennen was also under video observation, so that when the EEG and his recorded behavior were displayed simultaneously, correlations could be made between recorded events and any accompanying electrographic changes. Sounds wild, but it was fascinating to watch!

The results showed that Brennen was having more seizures than we realized. Like, a lot more. We can obviously recognize when he has a grand mal (generalized tonic-clonic) seizure, but some of the changes that were picked up on the EEG were so subtle, we would never have recognized them as seizure activity. It was shocking for us to learn that these seizures were happening so frequently, and it breaks my heart to know that Brennen had been suffering through that for so long without us realizing. 

On that day in May, Brennen was given a new diagnosis of Lennox-Gastaut syndrome - a rare and often debilitating form of childhood-onset epilepsy. Lennox-Gastaut is characterized by multiple types of seizures, moderate to severe cognitive impairment, and an abnormal EEG with slow spike-wave complexes. This makes for one of the most difficult forms of epilepsy to treat. Brennen has what is also known as intractable epilepsy - a seizure disorder in which a patient's seizures fail to come under control with treatment.

We have increased Brennen's seizure medication, and that seems to have helped things a little, for now. Giving his brain a rest from so much seizure activity has made him sleep better at night, and as a result, he is happier during the day.  

Seizures have become a regular part of our lives, and I almost hate to say it, but we have sort of gotten used to them. Up until recently, we just accepted that they were part of Brennen's diagnosis - cerebral palsy often comes with a seizure disorder - and we would have to live with that. Now, when I look up Lennox-Gastaut syndrome, I see things like "rare and catastrophic epilepsy" and "diminished quality of life". "Reduced life expectancy" is mentioned there as well. This condition comes with an increased risk of SUDEP - Sudden unexpected death in epilepsy - also referred to as a fatal "complication" of epilepsy.

This shit is real.

While we may have gotten used to the seizures, I won't ever get used to the fact that my child has to suffer and fight for his life on a regular basis. There are still many nights that he wakes up having a seizure, and even when he doesn't, I find myself running to his bedside to make sure he is breathing and that he is still with us.

Brennen has taught me many things over the years, perhaps most of all, to be grateful. I am grateful for every moment shared with him, and for every precious memory made together. There are times when I struggle to find peace, happiness, and the "good" amid the challenges. It isn't easy, but I am grateful for all that I have. Brennen is a blessing. His life is a glorious gift, and I am nothing but grateful. 

Sunday, July 8, 2018

Our Family Getaway

If you follow my blog, you know that Andrew and I love to get out and explore the many little towns and bays around our province. We had been in the habit of sneaking away for a long weekend, or even just for a night whenever we could, and it was easy to do that when it was just the three of us. We could arrange for Brennen to be out on a sleepover, and we would plan a little excursion around the bay to see what sights we could discover. Now that we have three children in our care, it is not so easy to get away. In fact, we haven't had a night to ourselves in almost two years. We have been craving a change of pace and a change of scenery, and as if at just the right moment, an opportunity presented itself that we could not pass up. No, we didn't get away, just the two of us. Who am I kidding, that might not ever happen again, but we did head out for an excursion around the bay - all five of us!

We packed up enough clothes, food, and medical supplies for a couple of days, filled our two vehicles with everything we could possibly need and headed out on the highway, up the western side of the Avalon Peninsula to Winterton - a quaint little town on the scenic Baccalieu Trail.

Yes, you read that right - we took two vehicles. It takes us two vehicles to go anywhere, and if anyone has any possible solution for that, I am all ears! Keep in mind, we have two children who use wheelchairs and an active eight year old boy who requires a booster seat. Brennen stays in his wheelchair in the van, our girlie sits in a car seat with her Kimba stroller folded up in the back. Then there's all the extra gear that we have to bring with us whenever we leave the house. We have thought of every possible and potential option, but other than actually buying a GoBus, we are stuck taking two vehicles. It's not the worst thing in the world. If it gets us to experience views like this, I'm happy!

Andrew and I had never been up that side of the peninsula, so we were excited to explore all that the area had to offer. We visited the Wooden Boat Museum of Newfoundland and Labrador, which tells the story of our province's historic wooden boats.

"The Wooden Boat Museum of Newfoundland and Labrador is a provincial organization dedicated to safeguarding the skills and knowledge of wooden boat builders. More than a museum, we document, celebrate and transmit our wooden boat heritage and explore the role of wooden boats in shaping the cultural identity of our province.

The upper level of the museum featured several rooms set up to showcase the way that people lived in Winterton back in the day. This bedroom reminds me so much of a room at my late grandmother's house. I'm sure she had that same bedspread.. and wash basin.. and doily.

The town of Winterton was absolutely picturesque, with it's charming shoreline and colourful fishing stages. I could have spent hours walking around the community, and I would have if we didn't have three children in tow. Turns out they are not all super interested in little wooden sheds and craft shops. Whatever. There were plenty of activities to please everyone, and we all had a really great time! We made some wonderful memories and came home smelling like sunscreen and wood smoke. What more can you ask for?!

The lodge that we stayed in was surrounded by old churches and saltbox houses. We couldn't have imagined a better view!

There were horses and goats in the backyard that proved to be just as friendly as the locals!

There was no shortage of things to do over the course of our three day getaway. There were many walking trails in the area that were boardwalked and easily accessible, and the weather was perfect for spending as much time as possible outdoors. Outside Pond Park is a large campsite and RV Park that has a beautiful playground right on the water. It is also home to Brenda's Chip Wagon, so you know.. when in Rome.. we had the fish & chips!

We also took the time to explore the nearby communities of Heart's Content and New Perlican. The Heart's Content Cable Station is a provincial historic site and was super interesting! We toured the building, watched a film about the station's history, and learned a little bit of Morse code.

"In July 1866, after nine years and several unsuccessful attempts, the first permanent telegraph cable connecting Europe and North America was hauled ashore at Heart's Content. This little Newfoundland town leaped into the history books and remained a global communications hub for over a century. The cable station opened the world to the outport men and women who worked here and remains a time capsule of the communications technology that connected us all right up to the 1960s."

What can I say about New Perlican? I'll let these colours speak for themselves!

So you guys, the thing is, the lodge where we stayed in Winterton is super accessible and it is available for use by families like mine. There is a ramp to the entrance, and a ramp inside from the main open area to the kitchen and sleeping area. There is a hospital bed, a Hoyer lift, and a wheel-in shower. There were even curved eating utensils in the cutlery drawer!

The owner, Heather, has put quite a lot of thought and effort into the potential needs of many different individuals, and making sure the space is as comfortable and accessible as possible. Her dream is for the lodge to be used and enjoyed by children that are "special and differently-abled and their families".

Heather is a graduate of Memorial University and a pediatrician who has been working in Toronto for the past 36 years. Her practice has always been very highly weighted in doing primary care for children with developmental, physical and chronic disease challenges.

Heather is super sweet and just wanted us to enjoy ourselves on our family getaway. Before we arrived she was emailing me messages like, "Feel free to use my dad's fishing rods if Brennen would like a new experience!" and "Should any of my mother's red currents be ripe, please feel free to pick them and eat them. Or take them home to make jam!"

Honestly, you guys, it is the perfect family getaway. If you are interested in staying at the lodge, please let me know! (email me at It's too good not to share!