Sunday, February 5, 2017

Hygge

This winter Hygge resonates with me. The simple enjoyment of Winter. Less busyness. Embracing the cold and snow. Cozying in. Making the home inviting, and simple in these snowy, cold Winter months.

Hyyge (Hyu-gah) originates in Denmark. It refers to a mental state of cozy, togetherness in the heart of winter. Until now, the only Danish part of my life is Lego. 😊  Learning about Hygge does not come from my family heritage yet it truly resonates with me.

To slow down, cozy up, have less commitments, play more, snuggle more, read, wear warm, woolen clothes, drink hot, spicy beverages, have warm homemade soups or chili simmering on the stove, play board games and turn the TV off, enjoy a quiet start to the day in the sun-room, watching the brave, winter birds feast from the feeders and brave the sassy squirrel who never hibernates, enjoy a muppet-esque dog sleeping by my side, content boys, loud boys, hungry boys, my boys, watch the falling snow, light more candles, read books, write here.......all of this is what Hygge means to me.

Sleepy muppet-pup.


As the snow falls and the temperature remains low, I hope you find your state of togetherness and winter peace today.

xx

Thursday, February 2, 2017

He's Doing Great....

....all things considered, for a boy with TS, for a boy with multiple bilateral brain tumors, etc, etc.

 Sadly, this is not enough for me and I want so much more for this boy.  Those "he's doing so well" words feel trite.

As we wait to see Dr. Neuro, Rhett is thrilled to pose for a selfie. LOL Um, not so much.

Yes, I am grateful. Yes, Rhett's health could be oh, so much worse. Yes, we are ever so lucky to have Rhett.

Yes, we want more for him. We want HOPE and encouragement.

After, 100+ "seizures" since Christmas Day (and more before which were not documented), we now wait for testing. VEEG (24 hr stay, video EEG) MRI,  levels, and mental health.  The Neurologist is not convinced that the sensations Rhett is having are seizures as they are focal and affecting one part of his body, not a whole side.  BUT something is going on. The brain sensations, the hand sensation, the memory challenges, the processing challenges ("You're confusing me!").  So, we wait for the chances to get answers.

I hate waiting. Don't you?

Hopefully the VEEG will take place within 3-4 weeks.
MRI? A year?

As expected, CBD Oil was not recommended by Neuro. For a few reasons. All reasons which seem to be based on the Big Pharma control factor.  Oh, Big Pharma, I have such a tolerance-hate attitude towards you.

On a secondary note, a new referral for Opthamology at ACH has been requested as it has been several years since Ophthalmology has seen Rhett. Recently, our family Optometrist expressed concern at the size of the tumor in Rhett's right eye. According to the pictures, Dr. B took two weeks ago, the tumor has grown dramatically. Opthamology usually has a three month wait. Hopefully, it's not longer.

After a 2hr appointment, "hospital cake" is well deserved.

So, there ya have it. Rhett continues to seize several times a day and we are waiting for  the phone calls to inform us on upcoming appointment times.

Tuesday, January 24, 2017

Natural Health Services

Are you interested in CBD Oil? Today we spent a few hours of our time at Natural Health Services with the intent to secure CBD oil for seizure control, anxiety, and attention.

The following is my experience and impression of the The Natural Health Services Clinic in Calgary. May this give you a small insight into the process to assist in your decisions.
The clinic is modern, clean, busy and has state of the art on line booking and medical information forms. I appreciate receiving text reminders of upcoming appointments, and the ability to complete forms on line.
Upon arrival, we signed in with the friendly, very patient receptionist and then it was a short wait before we saw the Doctor. I love a short wait!
The doctor was friendly, inclusive of my son and asked questions about his health and schooling directly to him (as well as me of course.) It is much appreciated that Dr. M spoke directly to Rhett, not over him or around him. So many health care professionals do this, talk of him as if he's not there, and it is unnecessary, to say the least. I digress...
Once a plan is agreed upon, we then moved on to the "store" where a "Bud Specialist" is to educate and help me choose a Licensed Provider. This is where the waiting took place for us! An hour at least before we were able to meet with staff. The boys were antsy but oh so patient in the scheme of things!
Now that I am home, I feel I could have used more detail during the choosing process. The CBD oil prescription we need is "in production" and only one producer in Canada makes it. Ugh! What this means is registering with two producers (no biggie) and ordering two oils to combine and make what I need. A little nerve wracking, but not really since I've been dealing with dosages and splitting meds and blah blah blah for many years.
So now, we wait. After registering with the producers, we wait for the paperwork to be received on their end which should take 2-3 weeks. Then an order is place and shipped directly to our home.
This afternoon, my boy almost lifted off his chair when he heard me report to the doctor the 99 seizures since Christmas Day. As I write this the tally is up to 107, so that is one reason to try CBD oil. Well, a mere 107 reasons.



Friday, January 6, 2017

Special Hands

The Seizure Monster.

Partial Complex Seizures stemming from the Motor Cortex.

A tingly hand, sometimes a tingle in the brain. A hand that will not respond.



10-60 seconds.

48 Partial Complex Seizures since Christmas morning.

One med increase: another 175 mg of Trileptal.

One 9 yr old boy who worries that he is going to need surgery again, who is concerned that he has "that type where you have hundreds of seizures a day that cause damage."


Many hearts melting each time another Seizure Monster rears it's tingly head. Many prayers being sent up for Rhett. Many thoughts and plans and wishes mulled over. Many questions. Many fears. Many hugs and laughs and continuing on.



A few hidden, quiet tears.


Friday, December 30, 2016

The Closing of Christmas

Another Christmas season has come to an end.

The month of December was quieter than usual, in some ways, and jam packed from the 21st on.


We were blessed to ride the Polar Express. It was magical, even to our older children and adults. The Alberta Prairie Railway puts together a Christmas experience worth attending, especially if your children are under 10yrs.  We loved the whole experience! The staff dancing to Hot Chocolate and serving up delicious chocolatey beverage in mugs that are gifted to us. Followed by a gooey, chocolate chip cookie, the reading of the story The Polar Express and then arriving in the North Pole to see Santa and his Elves waiting for the train. Hearing the children yell "Back it up! Back it up! " to encourage the engineer to reverse and pick up the jolly old elf himself, gave me goosebumps.



It truly was a sweet experience and one that our boys will remember forever.

Spending time with those you love, family or friends is an important aspect of Christmas. This year we traveled to my brother's and were blessed to stay with them for two nights, celebrating Christmas with a multitude of family members. Even though it has been years since seeing my SIL's family they opened their hearts to the boys. We all felt special and included. That is how we should all feel on Christmas Day.




Our 5 hour road trip home included two stops to visit with special cousins and friends. It was a long, long day yet worth the effort to spend time with friends & family. Afterward there was still a 3 hr drive facing us in the midst of a gale force Chinook. The weather change by 20 degrees and the winds wreaked havoc on the roads. Thankfully, Brad was driving, the boys were sleeping and we made it home safe and sound.


As we wind down from Christmas, and contemplate taking the decorations down I find that the New Year is on my mind. Resolutions? No. The need to reorganize and refocus? Yes. First, lets start with the home cause it is a Christmas disaster!



Tuesday, December 6, 2016

The Legend of St. Nicholas continues....

Warner's first homeschool Christmas we studied St. Nicholas. He resonated with the legend. Loved the idea of a man riding through the streets and secretly giving gold to help others. So, we adopted a very simple recognition of St. Nicholas Day.



Now, he and Rhett both look forward to St. Nicholas Day. It's "trailer for Christmas, like a preview" according to Warner.



Although one.more.thing. to organize and prepare for at Christmas is the LAST thing I want, St. Nicholas Day is fun. Advent kicks off the season and St. Nicholas Day just keeps it going.

The shoes are set out, the tiny gifts are placed along with chocolate gold coins. Breakfast is slowly baking in the crockpot. This year it's an easy Bumbleberry Crisp. The table is set with festive Santa plates and even a Santa and Rudolph snow globe. We are ready!



If only the rest of Christmas was this simple?!

Happy St. Nicholas Day to you!


Wednesday, November 2, 2016

How It All Began

Our Rhett was a perfectly healthy, aDORable, meeting all his milestones baby....so when the seizures began at eight months we were stunned.....and entertaining denial.  There couldn't be something wrong with our sweet baby. Every parent's fear.



How did the seizures begin? What did they look like?

Baby Rhett, "Bup" as Warner named him, had just woke from a nap. As I went to pick him up, his head was handing to the right and down and he didn't respond when I spoke to him. That was the beginning.


After two more of these episodes over the next two weeks, I knew something was very wrong. I was scared to even tell anyone. Can you imagine that? Witnessing something that is just not right with your babe, but being scared to voice these fears as then they are REAL. Was I simply a new (ish) mom over reacting? Was I exaggerating what I was seeing?

It wasn't until a month later, that anyone else witnessed these episodes other than me. First my mom. We were folding laundry together and Rhett was standing, holding onto the laundry basket. He wasn't walking or fully standing on his own yet. Suddenly his head dropped, his right hand let go of the basket and he wouldn't respond to my mom's voice.

 "Rhett. Rhett. Margo, what's he doing?" said my mom with alarm in her voice. For the record, my mom basically never shows alarm. Seriously. Rarely ever. So just the fact that she saw what I saw and that it scared her terrified me. Even all these years later, as I write this, my eyes tear because hind sight is 100%, and my mom's concern reiterates how obvious and scary those seizures were.


That was the beginning.

Soon, my husband witnessed a seizure.

Now my fears are shared and we act. An appointment is made with our family doctor. Of course, it takes two weeks to see her. In the mean time, the "episodes" are increasing in frequency. They have escalated from once every two weeks, to weekly, to hourly. The evening of the hourly incident we are dining at a friends. They see our baby drop his head onto my shoulder, his right arm stiffen, and the inability to respond when we talk to him. It is hard to share this with others. It is scary. Sad. Unknown. That night we forget about our upcoming doctor's appointment and head to the emergency department at our local Children's Hospital in stead. This is too much. This cannot wait another day let alone week.

Rhett and I spend hours there. Undergoing questions and questions and questions. Finally a psych staff member witnesses a seizure too and sees this is not in my head, he is not seeking attention (seriously, I was asked that), this is not about my marriage or finances or abuse, this is a beautiful baby boy having seizures.



I clearly remember driving home early the next morning, with a sleeping Rhett in his car seat, all bundled up in an ambulatory EEG, talking on the phone to my dear friend MJ, teary that our sweet Rhett has Epilepsy and we don't know why.


This is the beginning of Rhett's seizure story.