All dressed up, places to go.

Todd & I have had opportunity to get out on the town a few times this year and one of the highlights was our meeting Sebastien Sasseville who earlier this year became the first Canadian living with Type 1 Diabetes to summit Mount Everest.

Here we are with Alan Brown (JDRF Victoria Chapter Chair), Sebastien, Me, Todd at the JDRF Promise Ball. Where we had a fabulous time but I'll leave that for a different blog....



What does this post have to do with today? Absolutely nothing.

But I spent the morning shovelling our ^%&%#@ 2-sided driveway (I know that no one really feels sorry for me but it was heavy snow and deep and we sold most of our shovels when we moved here because it's NOT SUPPOSED TO SNOW HERE). Then, feeling peaceful from shovelling the driveway in the quiet calm of a picture-perfect snow-covered winter day (and there was no one around because no one drives in the snow) that I rewarded myself with an afternoon at the lined-up-at-every-store-because-half-the-workers-can't-make-it-to-work-so-stores-are-at-half-staff-but-didn't-affect-the-shoppers frenzied Mall... trying to track down that last unexpected gift... from my inlaws to my children.

So I wanted something to make me smile - and this memory always makes me smile.
Oh yes, and the fact that my kids are very happily playing Monopoly with each other right now!

Diabetes question.

This is a question for those familiar with diabetes:

We have a absolutely fantastic sitter (no, you can't have her name!) but came across an opportunity to use an almost 16-year-old boy to look after the kids last night. This boy has had diabetes for almost 5 years and uses the syringe/pens. I left a note outlining what the kids should have for their snack (at 7:45), what time for bed (8:30), etc. I verbally confirmed that Tomas should be tested before his snack and whenever he or the sitter think he needs to be tested. I left my cell phone number and said we were just going for supper to a nearby restaurant so he should feel free to call anytime. [I didn't mention insulin because in the past when we've been out for supper we just give it to him when we get home (9:00 at the latest). That way the sitter doesn't have to give the needle or calculate the amount.]

When we came home (8:30 - ya ya - we're party animals). I told Todd that I would drive the sitter home and he could give Tomas his bedtime insulin. The sitter said "Oh, I gave him 3 units at snack time. I wasn't sure if I was supposed to give it to him so we found his log book and I just figured it out and gave him the 3." (Which is totally what I would've given him).

The sitter uses NpH (cloudy) but Tomas has switched to Levemir (clear) for his night insulin but this didn't seem to phase the sitter. He said "Tomas said he uses the green pen for bed. So that is what I used". Again, this is true.

OK, am I an overreacting parent because the sitter gave Tomas insulin or should I be thrilled? My husband thinks that this is totally fine and because the boy lives it - it's like second nature to him - he probably didn't even think twice about giving the insulin. I think - if he wasn't sure what to do - he could have called.

In any event, the kids love playing with him (he can throw a grape up and catch it in his mouth on the way down; they played hockey and in fact, were watching hockey on the TV when we came home). I figure I'll just have to be more specific next time although I must say that what he did was totally correct and that it is kind of a nice to have a sitter that just knows.

Diabetes mentoring

The local JDRF put on a workshop this weekend on mentoring other families that have recently received a diagnosis of a child with diabetes. I went.

When we first received the diagnosis - I was desperate for someone to talk too. I craved information. I tried calling the JDRF and they said they'd look into finding someone local but I never heard back (I now know this is because they had no program in place!) I spent hours reading on the Internet. I called our friends back in Edmonton who had a son with diabetes. I called other friends who had experienced the unexpected (so to speak) with a child. I needed someone to listen. To say "it'll be OK". I had NO idea. I was scared shitless. I am thankful to everyone that listened to me. I am thankful to everyone that said "it'll be OK". I am thankful to the Internet for letting me find people who talk about it and how it affects them and their children.

I hope that I can give back to a newly diagnosed family what I received and continue to receive.

-------------------------
At this meeting was a lady (22 years old) who is preparing to run with a diabetes group the 26.2 mile (42 km) marathon in Rio de Janiero, Brazil later this spring. (How cool would that be!). Her mother had planned to attend the meeting but ended up not being able to make it so she sent her daughter who has diabetes. She had many fascinating things to say:

- She used to hate being with other kids with diabetes because it made her realize she was different than her day-to-day friends.
- Then she loved having other friends with diabetes because she was the same as them.
- She didn't like learning about people who accomplished so much and had diabetes - Inspirational people - because it had never occurred to her that she couldn't do whatever she wanted to do because she had diabetes. By meeting these people she began to think that maybe she could NOT do whatever she wanted.
- Now she is preparing to run the marathon to prove that she really can do whatever she wants - and if it wasn't for diabetes she said she can guarantee that she would never be running a marathon.
- Oh ya, and like 1 in 20 with Type 1 D. she has Celiac Disease (no gluten).

------------
I learned from her that our children our normal and diabetes can make them do inspirational things but we need to focus on helping our children do what they want, regardless.

However, as a parent who is still scared about having a child with diabetes and still craves information to know that everything will be OK, I am thankful that I continue to meet inspirational people.

-------------
P.S. I am very tired and typing this so I hope it makes sense! G'night!

Sports Sunday

What an awesome day we had on Sunday. First up was a game by the local hockey team - Victoria Salmon Kings (ya ya, I hear ya 'that is the dumbest name I have ever heard for a hockey team'.... BUT get this - they live on the west coast and play in the ECHL... Eastern Canadian Hockey League). Oh well, never mind. The point is - they won!

YES. She put THE TATTOO ON HER FOREHEAD! She's only 5 - what am I going to do when she's 15????? Note to self: Start looking into convents.




The Beavers and Sparks (5-year-old Girl Guides/Girl Scouts who wear pink!) were the special invited guests so, of course, that was us! Tomas sat with the Beavers (unfortunately, Todd was sitting in row 12, aisle seat, of a plane and had to miss the game) and Toria & I sat with the Sparks. I dashed back and forth to make sure everyone was OK - and I gave Tomas a walkie-talkie to call me if he needed anything. He totally did not. "He did awesome" says the mother as she wipes away the tears from her cheeks... her little boy is growing up.

Fortunately, there is still a little tattoo-wearing girl who needs me.


But the most coolest part was after the game when we got to skate on the ice with the Salmon Kings.






Toria had the Salmon Kings diaper-wearing mascot... a MARMOT! (true story - I guess the same drug-induced haze that led the 'suits' to name a western team playing in the ECHL the Salmon Kings also thought it was OK to put a diaper on a mascot . (OK - totally digressed there) ... Toria had the diaper-wearing mascot, err, Marty, the Mascot sign her helmet! Tomas opted to have the players sign his mini-hockey stick.

AND as is if hockey and skating wasn't exciting enough we then dashed to the pool where there was a JDRF function. We had skated too long and missed the swim but we got there in time for the supper and event thingmagigy. [Clearly the JDRF employee who organized it has no diabetes relative because for a 6:30 Sunday-night dinner she ordered big, gooey, thick crust pizza for the kids... oh ya!!you diabetes parents out there totally get that. 1-hour swim then pizza. At 6:30pm! Yep! (To non-diabetes readers - Pizza's does totally crazy things. It generally makes blood sugar go really really low and then BOOM it is sky high. And in this case, that would happen in the middle of the night when we should be sleeping. That is why - Tomas has pizza at lunch times. Except Sunday night when I got up twice in the middle of the night to check his sugar levels].

However, it was yummy and I was announced as the Family Chair for the Walk to Cure Diabetes. I have no idea what that involves but I guess I'll find out. Yack yack, yack, I'll get to ...
the guest speaker ....

Chris Jarvis who is an Olympic rower (competing this summer in Beijing) who has type 1. He was an awesome inspiration for the kids (and a reminder to us parents that these kids survive diabetes and they can do anything).

The most interesting thing he said was when he was telling us a story about his semi-final race at the Athens Olympics. Apparently, Canada was in 1st place with only meters to go and they were accused by the South Africans of hitting their boat. Eventually, Canada was disqualified and the South Africans won bronze in the final. What he said was that that diabetes actually HELPED him to make sense of this tragic situation... he thought about all the precautions and care he takes to manage his diabetes and the reason he lost his chance at Olympic gold had nothing at all to do with diabetes - it was a total fluke. And that is sorta what life is about. Living life with diabetes not letting diabetes decide your life.[And he's planning on getting gold this summer in Beijing].

And finally in my long-winded blog today... My snowdrops are blooming!

Not 1..

Not 2, not 3, not 4 but (including this post) that is FIVE posts today! I hope that catches everyone up. I've neglected my kids (what do you mean that watching TV for 4 hours a day is bad for them? ... just kidding - they're at school) BUT the dishes in the sink are overflowing not to mention the laundry piles that are lined up down the hall.

Actually, I'm just kidding about that too - for the first time in 3 months I'M ALL CAUGHT UP! Oh sure, I could go and re-organize the pantry or clean-out the craft cabinet but I think Not!

Note to my handsome husband: Skip next paragraph.
I might even go and start hanging around Facebook. I joined last week in an effort to see photos of myself that are going to be published in a magazine. Now, don't get too excited - I represent the middle-age mom demographic for the fitness trainer I go to. If I ever figure out how to get them from Facebook to here - I'll let you know. My fitness trainer never did (hence why I had to join to see them). I've avoided Facebook for so long because I know it is so addictive and do I really want everyone snooping about me like I snoop about them?

To any diabetes bloggers who read this ...
Tomas finally met the pediatric endocrinologist last week and we switched to a new night time insulin (Levemir) which is awesome. He was on npH at night which was producing crazy blood sugar levels and I was checking him almost every night. YIPPEE. For the past two mornings he has woken up at 6.5 and 6.7 (or 115ish).

He also finally met a person who wears a pump (a pager sized device that you wear outside your body (with tubing and a catheter into your tummy or elsewhere) that allows for much greater regulation of insulin then the 3 needles a day he now gets of insulin). He is now thinking about getting the pump. He doesn't want to wear it when he sleeps but he's thinking about it so that's a good start. We do OK with the needles but my understanding is the pump is much easier to monitor and provides much more consistent sugar levels... although his last A1C reading was 6.5%.

And last but not least - Go Riders Go.

What not to say

Scene: It's 1 minute until skating lessons start and I due to @#!@# construction*&^ still have 3 skates to tie plus 2 helmets to find and attach to my 2 children's heads. I'm frantic. I can see the instructors heading onto the ice. EGADS. I can see the other kids and their parents walking towards the ice. shit. I can't tie skates any faster. Phew. Done. Now just for the helmets and we're only 1 minute late.....

Tomas: "Mom, I feel low".
Mom: "Tomas, that's unlikely. You're usually a little high at this time because the insulin has worn off and I haven't given you the next dose plus I gave you an extra snack because of skating. However, thanks for letting me know and I'll test you just in case".

Meanwhile.... I'm telling Toria that she needs to get onto the ice but she won't go until I go with her.

Mom: (reading the glucometer): "3.2 (around 60). Oh Shoot. Your right Tomas, you're really low. Here - eat these glucose tablets." I shovel the glucose tabs into him before ensuring he's OK so I can dash across the lobby to the ice with Toria.

As I run past the entrance where Tomas' coach (and a number of other parents) are standing the coach asks "Is Tomas coming?". As I'm running past and dragging Toria along (I'm completely frazzled at this point) I quickly respond "Yes, but I won't let him come skating until he has more sugar."..... and then I'm gone....

Hmm. As I drop Toria off and begin the dash back across the lobby to Tomas it occurs to me that that probably didn't sound good.

I go back to the coach (& eavesdropping parents) and explain that Tomas has Type 1 diabetes and he's having a low blood sugar episode and he needs to increase his sugar levels back into the normal range before he can come onto the ice.

The coach is an older gentleman and someone you would NEVER think would be teaching kids to skate so when he says "Thank you for explaining that to me - I am a judge and was wondering about your parenting abilities. (uh-oh) However, now that you've explained it to me - I am a Type 2 and I understand about highs and lows. Tell Tomas that we'll be waiting for him when he's ready."

Phew.

Fortunately when I tested Tomas he was up to 6.0 (108) and he went out for the last 15 minutes of skating lessons.

Diabetes and more

I've never blogged about Diabetes (except just after our son, Tomas, was diagnosed) - I try and pretend Tomas is a normal kid that just gets extra medicine (the same way someone with thyroid problems would take a pill). Alas, the time has come that I feel comfortable passing along how it has affected our life.

I do read other diabetes blogs faithfully and they've been fantastic support. I read Mom wants a Diabetes Cure and Sunny Side Up and a few others - I only find the time to read the ones where the parents have a child with diabetes but there are lots of great all-around diabetes blogs around.

When Tomas was first diagnosed this spring - I freaked out. T.G. we had friends in a city where we had previously lived who had a child diagnosed at age 2 with diabetes and they were a huge help in calming me down.

After we'd had 'diabetes in the house' for a few weeks I said "I can handle this. It's only an extra 30 minutes cumulative a day. " But you know what? It's more. It never ends. Ever. And it's not 30 minutes - some days it can be every waking minute wondering why your child has high sugar readings or low sugar readings and how can you make sure they eat their snack when they're at the play date or how do you handle that the other parents don't want them over for a play date because they're afraid something will happen to Tomas (I've prepared a simple hand-out but diabetes is scary and it is a big responsibility). He gets his sugar checked at school at 11:00am and I'm ALWAYS near a phone so I can get it if they call. Yesterday I was at the dentist with my mouth wide open at 11am but I'd told the dentist he'd need to answer the phone if the school phoned.

I try and shelter Tomas from the diabetes work because it will be something he has to deal with EVERY SINGLE DAY FOR THE REST OF HIS LIFE. And it's not like it makes sense everyday. Sometimes Diabetes just goes berserk and you have really high readings all day or really low readings. Or really high THEN really low. It requires constant vigilance. My purse has increased back to diaper bag purse size because of his testing kit, snacks, etc. that I carry everywhere I go. Even if Tomas is not with me - I may get a call and have to go straight to help him.

For those of you wondering - Tomas' diabetes day goes something like this:
7:15am - finger poke
7:30 - needle with NovoRapid insulin mixed with NPH insulin
11:00 - finger poke at school (done by an Education Assistant)
3:00pm - finger poke
5:30 - finger poke
5:30 - needle with NovoRapid insulin
7:30 - finger poke
7:30 - needle with NPH insulin
Middle of the Night - Tomas is checked at least twice a week in the middle of the night - more if his numbers have been off.

PLUS he'll usually have at least one additional finger poke because of odd highs or lows when I'm trying to figure out what the hell is going on.

He eats his meals at 7:30am, 11:30am and 5:30pm
He eats his snacks at 10:00am, 3:00pm and 7:30pm

Tomas' dietitian (who has type 1 diabetes) is excellent. She has helped us ensure that he can still have 'yummy' food (in moderation) but each morsel of food that Tomas eats is measured and the carbohydrates are counted. We record the carbs and insulin amounts in our diabetes record book. And half the time it doesn't make sense. I thought that once you'd been doing this for awhile you'd get it set and just hit 'repeat' for each day. HA HA HA. Every day requires new guesses, measurements and prayers that you've adjusted the food(carbs)/insulin/exercise (uses sugar) to a safe rate that won't damage your child's organs.

[I did just get his A1C levels back and for his first 3 months of diabetes he was 7.6 - we've been told that is very good. For those of you who don't know about A1C levels - that's a discussion for a different email.]

In case anyone is wondering - we've looked at the Insulin Pump but there is no one at the school that is (or can be) trained to help with any insulin adjustments required during school hours (we're lucky to get someone to check his sugar levels). We've also looked at Lantus but there is no one (as above) to give him needles at lunch time. When he is a little older we'll definitely go for the pump.

Mainly I am desperate for child care. We used to have the greatest babysitter in the world. She was a mom, a teacher and was awesome. BUT the big D scared her and she isn't comfortable looking after Tomas anymore.

I'm willing to pay oodles to get someone to look after my kids so my husband and I could at least go for supper or just out for 3 or 4 hours. Never mind getting away for a night or two. I've tried the JDRF, I've tried the local diabetes clinic - the economy is so red hot that no one wants to babysit a kid with diabetes no matter what we'd pay. And quite frankly, at this point I've offered DOUBLE minimum wage. Although I do have a lead on calling the Nursing Department at the local University.

Tomas is the only kid he knows with diabetes. There are no other kids in his school with diabetes. He had another kid in his class this year wearing the medical alert wristband so he thought MAYBE but then he came home and said "Nah, he's just got allergies". He never complains about getting needles, he never complains about finger pokes, he never complains about missing lots of schools when we see all the varying doctors and specialists (well, he does kinda cheer about that).

Tomas does handle his diabetes like it's part of his life which is great although I noticed he got all defensive the other day when another mother asked how he was doing with his diabetes. He turned red and said "it's fine!" then marched away. He doesn't want to be different but so far he has handled it like a pro. We attended the Walk to Cure Diabetes (which was hard for Tomas to understand because he thought he'd be cured after he walked) but didn't meet any other kids and since it was summer the local diabetes clinic closed down. We're hoping to meet kids at the next diabetes clink "check-in" in November.

Tomas is an awesome kid and I am thankful for everyone around who has supported us and the quest for a cure for Type 1 Diabetes.

Thank You!

Thank you for your support in the Walk to Cure Diabetes!
Team Turbo Tomas raised $1500 - that's awesome.

Due to your overwhelming generosity Tomas joined the "Sneaker Club Wall of Honour" and was asked to come onto the stage and 'bang the gong'.

Pledge online

AN UPDATE:


Talk about simple - you can now support Tomas' Walk to Cure Diabetes on June 10, 2007 by pledging online. Use your credit card and earn air miles/aeroplan points. It's a win-win!

Follow the link to the JDRF Canada's pledge a walker:
Pledge A Walker

You can search by either of the following:
Participant:
Team Name: Team Turbo Tomas (remember there is no H in Tomas).

(We're walking at Beaver Lake in Victoria).

Once you find us - you can just follow the secured link to contribute whatever you like. Remember no donation is too small as every cent counts.

Thanks for your support! Tomas & family

Walk To Cure Diabetes

Donation time....

If you're interested in supporting Tomas in the Walk To Cure Diabetes (on June 10, 2007 at Beaver Lake) please either email or call with your donation. Tax receipts will be issued in late Summer 2007 for any donations of $20 or over. You may pay by cheque, cash or credit card (support a good cause and earn aeroplan/air miles!).

The Juvenile Diabetes Research Foundation of Canada is dedicated to finding a cure for diabetes and its complications. And we need your help. The insulin that Tomas receives is NOT a cure.

In addition to tightly managing his diet Tomas' treatment includes finger pokes between 5 and 9 times a day and insulin injections 3 or more times a day.

Over 200,000 Canadians are afflicted with Type 1 (juvenile) diabetes – many of them children. Diabetes is the leading cause of kidney failure and lower limb amputation and a leading cause of adult blindness, nerve damage and heart disease. Insulin is not a cure.

You may be interested to know that Canada has the third highest occurrence rate of Type 1 diabetes in children 14 years or younger in the world and the Type 1 diabetes occurrence rate is rising by 3 - 5% per year; the greatest rise occurring in 5 - 9 year olds. No one knows why but what we do know is the constant demands of Type 1 diabetes. Type 1 diabetes is NOT brought on due to lifestyle choices it is a chronic autoimmune disease.

There have been great advances and each year research provides more promising hope for everything from reducing the number of daily finger pokes to creating an artificial pancreas to restoring the insulin-producing beta cells that are destroyed by Type 1 diabetes and most importantly developing a cure for Type 1 diabetes.

Thank you very much in advance for your generosity. With your support the Juvenile Diabetes Research Foundation will realize its mission; to find a cure for diabetes and its complications through the support of research. We hope that children with diabetes will soon be able to enjoy happy, active, normal lives. Together we can make great strides in finding a cure for diabetes.

For more information check out the JDRF website: http://jdrf.ca/

Thanks, Tomas-hockey-player-K. (and family)

Normal Saturday

We're getting closer to getting back to 'normal' ... whatever that is.

I attended the "Making Tomorrow" conference for parents/teachers of young children at UVic today. Silken Laumann was the keynote speaker (turns out she lives in the next neighbourhood over). Anyway, I didn't call home to check on Tomas ONCE.

Of course, I may have looked at my phone and even started to dial 50 or 60 times but I didn't. I knew Todd & Grandma could handle it and they did.

Todd went for a bike ride this morning (47km) and Grandma was in charge. She did great. Tomas' blood sugar was a little low at lunch but not low low (less than 4.0) and she handled it perfectly.

Tomas' blood sugar was quite high last night (I know because I checked it at 2:30am). The nurses all say that you really don't need to check at night but I am freaked out and would rather check it then have Tomas go into hypoglycemic coma (which is rare but we're still figuring things out so I figure it's OK to check). Although I am totally exhausted.... which is why the nurses say you shouldn't need to check his sugar levels at night - if you're too tired then you can't take care of yourself or your child and you make mistakes.

Getting back on track - I arrived home from the conference at 4:30 and Todd was at the park with Tomas & Toria. Tomas & Todd were trying to teach Toria to ride a 2-wheeler. She's getting closer. Tomas is a cycling speedster and was offering great words of encouragement. As for my mom, she was at the grocery store getting food for supper. (Note to Dad: Seriously- Mom was grocery shopping and she got all the correct ingredients for Beef Strogonaff! Great, eh?)

Good night. C.