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.

Tuesday, November 1, 2016

November Epilepsy Awareness Month

November is Epilepsy Awareness month. 


This year I will be posting and blogging Rhett's story. Although Rhett's seizures are quite controlled through meds and a past neurosurgery, it's important to share what he has been through, how far he has come and how the seizures affect him even though they are not visible to your eye. An observer may not notice Rhett's seizures and they are not of the "grand mal" (old term)...generalized tonic clonic type, yet they are still important, they still cause changes and damage. My decision to share is a reminder to everyone including myself how amazing Rhett is and that Epilepsy affects people, always. We all can handle a little more compassion and awareness towards our friends living with seizures. 


So, join us for a month of celebration (yes, we have much to celebrate!), education and remembering all we've been through.
xxx

Friday, September 30, 2016

Forest Walk




Walking in the cool fall sunshine, we  explored our local forest to identify and recognize the trees that live in our area. It was so lovely to walk and pay attention to our surroundings, to be.




Of course, nature isn't everyone's interest and there were moments of me reaffirming to one of our scholars that we were there to to LEARN and OBSERVE and it's much more interesting if you PARTICIPATE. Ack! Even though this is the ideal way to learn it doesn't mean it's always easy, especially when one isn't interested in trees. Oy!



However, we all enjoyed being outside, with our friends and even learned new information and spike our interests in the difference between Spruce, Pine and Fir trees. And that is the most important part of learning isn't? Interest. Desire. Questions.



An afternoon well spent, an education well met.


Forest Walk




Walking in the cool fall sunshine, we  explored our local forest to identify and recognize the trees that live in our area. It was so lovely to walk and pay attention to our surroundings, to be.




Of course, nature isn't everyone's interest and there were moments of me reaffirming to one of our scholars that we were there to to LEARN and OBSERVE and it's much more interesting if you PARTICIPATE. Ack! Even though this is the ideal way to learn it doesn't mean it's always easy, especially when one isn't interested in trees. Oy!



However, we all enjoyed being outside, with our friends and even learned new information and spike our interests in the difference between Spruce, Pine and Fir trees. And that is the most important part of learning isn't? Interest. Desire. Questions.



An afternoon well spent, an education well met.