Which is worse, the disease or the cure?

....Or maybe there is no cure, and that's where the problem is. On Wednesday I took Mark on a three hour trip to the neurology clinic at the Alberta Children's Hospital.Since our car accident in 2001, Mark has been profoundly disabled and has had a history of seizures. For the last 5 years, his seizures have been very well controlled through the Ketogenic diet. He has been seizure-free, in fact, for the last year, as well as for other long stretches on the diet. Prior to starting the diet, he had 30-100 seizures/day even with multiple medications.
Anyway, until I went to this appointment on Wednesday, things were going pretty well for Mark. The medical people feel that it is now time for Mark to come off the ketogenic diet, as long-term it causes various side effects including low bone density. So the plan is to wean the diet, beginning after Christmas, and if (or when) he starts having seizures again, to try a variety of medications he hasn't tried yet. In the meantime, to assess where he is at, there are multiple tests and referrals.
For example, they requested blood/urine tests. I took Mark yesterday morning to the lab fasting, as required for these tests. They wanted 7 vials of blood from my poor little boy and after being there for over 1 1/2 hrs (and we hardly waited in line) and after going through 2 veins, and looking at length for others, they only got 3 or 4 vials, and we have to go back again. This whole time Mark was screaming and Preston wasn't too happy either.
Next we will have a bone density scan, an EEG, a referral to Cardiology in Calgary and most likely Endocrinology. Then the diet will end and the seizure battle will most likely begin.
I wonder if I should have spent Wednesday at the mall.

Say a little prayer for Mark--he could use it.

Have you ever had one of THOSE days?

My Wednesday trip to Calgary for Mark's neurology appointment was a bit of a comedy of errors which all began because I forgot to take his prunes. ***Background: Mark is on a special low carb diet which he gets via tube feed. The only carbs he gets are in the form of 10 mls of prunes with each feed. These prunes are very important because they keep him from getting excessively ketotic on the diet (which could lead to ketosis, diabetic coma, etc.) *** Anyway, I discovered that I had left the prunes at home (sitting on the counter, ready to go) when I was at the appt. at 11:00 feeding Mark. After the appt. I decided to forgo eating in the hospital cafeteria and go directly to Shopper's Home Health where I had an appt. to look at wheelchair vans. For you Canadians, who know Shoppers, usually the home health centre is connected to a Shopper's Drug Mart, which would be an ideal place to get baby food prunes. Having never been there, I followed the directions and hoped for the best. However, no Drug store, just the medical supply store. So I looked at the vans, etc then got back on the highway. I exited at a giant outdoor mall area and started looking for a place to get prunes. All I could find was Superstore, a massive grocery store. I carried Mark in, because his wheelchair was dismantled for travel in the back to the car. I bought the prunes, fed Mark again and then realized it was almost 3:00 and I hadn't eaten. Exhausted, hungry and worried about getting home--I had thought I'd be back about 4:30--I decided to try and find a fast food restaurant. There were a few in a little strip mall, and left Mark in the car while I went in and picked up my takeout. There was no line, I could see the car from the store, and I was inside for about 5 minutes. Anyway, some concerned younger ladies pulled up into the stall next to the car and waited there until I came out, then lectured me about how I shouldn't leave my child alone in the car.
I was so flustered from that experience, that I accidentally got in an exit lane and ended up in the bow valley river bottom before getting back on the highway.
When I got home at 6:00 after listening to Robert Munsch stories all the way, I had a pounding headache and a wishing I had never gotten out of bed that day.

Commander Preston no longer in Command-0

I admit, I am no genius when it comes to potty training my kids. Perhaps my underlying weakness is that I hate to fight. Anyway, Preston doesn't seem to mind fighting and had successfully insisted that he didn't want to use the potty until about the end of September, at which time he was 3 1/2. By that point, I had been praying to find a way to help him past that mindset. An idea came to mind to bring down a little floor desk and set it by his potty. Then, I told him I would give him a surprise if he sat on the potty. From the first time he was intrigued. Where promises of freezies and candy, etc. had failed, a surprise activity to do with mom while sitting on the potty worked. For at least 2 weeks I played matching games, did puzzles, played yahtzee jr., the hungry hippo, did card games, and played with playdoh while Preston did his business on the potty. After a couple of weeks he started sitting on it himself. I was kind when he had accidents, but washed him off in increasingly cold water, and left him shivering while I went to find clean clothes in the laundry room or srubbed up his mess. When one day, he finally pooped in the potty, he realized it was much more pleasant than being hauled off the bathtub to get wiped up, rinsed in cold water, then bathed. He only pooped one more time in his pants, and since then always on the potty.

I let the supply of pullups run out but he absolutely refused to wear underwear--even though we had Diego, Thomas the Train, Transformer and Bob The Builder underwear. So for about a month he was going around commando--just pants up against a bare butt! Two days ago, Rob found a bribe that worked. A Kindersurprise egg, which Rob bought, showed Preston and let him have after he put on underwear! Preston came out doing the hahaha-nanananana-i-got-a-chocolate-egg dance. Anyway, he has been wearing underwear--and I'm pleased to say, we have even changed them--for two days! Now, they may be on upside down, inside out and backwards, but he is still wearing them and that's a breakthrough!

The last frontier...Preston still refuses to try "the big potty" and will only do his business in the training potty which we have to take with us everywhere we go. Wish me luck overcoming that one!

Congratulations, Alyssa!

Today Alyssa presented a speech for the Magrath Lion's Club Remembrance Day speech competition and won! She spoke clearly and with great poise, intonation and conviction. It was delivered completely from memory. She has been asked to deliver her speech at the town Remembrance Day Ceremony next Tuesday. Good work, Alyssa! Here is the text of her speech in case you are interested:

"Would I be Willing?
In the Canadian 2008 election only 59.1 percent of Canadians came out to vote. What is wrong with us? Do we not care that people sacrificed on giant scale, and we can’t take 5 minutes out of our day to vote!! Canadians we need to fix this!

During World War I and World War II, Canadians sacrificed on many levels. For example, during World War II, everyday Canadians had to ration items such as sugar, tea, coffee, meat, and butter. They also planted victory gardens to supply food for the country and to support the war. They bought war bonds. Many people, including women, went to work in wartime industries. In World War I, 600,000 Canadians served in the Armed Forces and 60,000 of them never returned home. In World War II, over one million Canadians served in the armed forces and 43,988 of them were killed. Many others served in the Red Cross, the Merchant Marine and many other supporting services. Most of these people volunteered to serve their country and some even lied about their age or minor disabilities to be allowed to serve. For each individual serving overseas, there was a family that was separated—parents, spouses, siblings and children--who waited and worried. However, despite all these hardships and even when newspapers reported heavy casualties, Canadians were behind the war effort 100%. When looking back on the events of 1914-1918 and 1939-1945, I can only marvel at the unity, determination, self-sacrifice, love of democracy and of country that characterized Canadians of those times.

In contrast, our times have been times of prosperity. In fact, not only have I never had war affect me personally, neither have my parents or grandparents. We have been lucky enough for many years to have great opportunities to pursue our own interests and to increase in prosperity. Perhaps it is unavoidable that this prosperity would make us soft. We are beginning to forget our civic responsibilities. In the 2008 Canadian federal election, for example, only 59.1 percent of Canadians went out to vote. Some try to get out of jury duty and many find it hard to imagine military service. Our World War II veterans are in their 80s and the veterans of the First World War are gone. There is little to remind us of former days of sacrifice for the nation.


Recent economic turmoil, however, is leaving a lot of people wondering if more difficult times are ahead of us than younger people have ever experienced. In addition to world financial troubles, numerous conflicts are brewing around the world and could at any time involve Canadians in a large-scale basis. My generation’s challenges might be military, financial, environmental or social. Regardless of the nature of the trouble, my country may need me to sacrifice and contribute just as it needed my great-grandparents’ contribution. William Shakespeare said, “Be not afraid of greatness; some are born great, some achieve greatness, and others have` greatness thrust upon them.” Perhaps it will only be in difficult times that my generation will be able to find out if it is capable of greatness. I truly hope that I will be ready and willing to do what it takes to serve my country in the twenty-first century. "

Today While the Sun Shines

I remember the year my brother Joe was married in early March in St. George. I stayed at Liz's house in Las Vegas. I remember as Liz and I were driving to LV from Salt Lake we stopped for gas at Mesquite. There, at the gas station, was a little patch of green grass. I asked if we could sit on the grass for a few moments in the warm sun. I smelled it and soaked the feeling it. It had been cold winter in Rocky Mountian House, Canada, and had been about 5 months since I had sat on green grass and felt a warm sun in my face.

With that memory in mind, I have learned to be grateful for warm days late in the fall or early in the spring. This fall we have had unseasonably warm weather here in Magrath especially the week of Halloween and the first couple of days in November. On November 1st, our family enjoyed the 20 Celsius sunny day, playing together in our backyard on the trampoline and in the sand box. Here are our pictures:

Roll of Thunder Hear My Cry

Read this book it is really good if you like Amercian history we read it at school it is about the Logan family in the year 1933 and they are trying to keep there land they are also black people so the people in the missipi comunity are not nice they do alot of cool stuff to try to gain rights. It is a fairly sad book but most people are able to handle it The ending is sad but it is well written. I loved this book and I am sure you will to.
This book is written by Mildred Taylor They should have it at your library.

Alyssa's Blog

EVERYONE WHO KNOW'S ALYSSA PLEASE CHECK OUT HER BLOG PLEASE @ annaalyssarylee.blogspot.com