Life with Creative Kurtis

This kid continues to amaze me with his creativity. This is a "device" he made the other day. The base is a motor that spins around. This is from his K'nex sets. He then attached a K'nex straw to it. At the very end, he had wire attached to a butterfly (fake, obviously) that he found. He secured the whole thing to the ceiling with tape. Once turned on, the butterfly spun around and around. He made it especially for me.

Very late with this, but better late than never, right?

Down Syndrome Awareness Day (DSAD) was on March 21. I was cleaning out my "favourites" and came across this site that has videos from DSAD 2006. Enjoy.

http://www.showdown.name/#

"My Special Someone"

My mom is special to me because she is sick and she still does many things for me. She takes me to school and takes me and Ryan to Chicopee to learn to ski. Sometimes she takes me and Ryan out to eat for breakfast, lunch or dinner. My favorite thing is she lets me and Ryan stay up late sometimes.
Love,
Kurtis


This was an assignment Kurtis had at school. I cried when I read this. Can you blame me?

I try hard to make life as normal as possible for my kids - it was one of my goals when I found out I had cancer. I didn't want this cancer to take over and be the focus of their lives. Unfortunately, in many ways it is. I can't help that I'm out of commission for at least one week every month. It breaks my heart when someone asks Ryan where Mommy is and he points to the bedroom and signs "sleeping". It breaks my heart when Kurtis asks to go tobogganing in the winter and I have to say no because I can't physically do it. But I am trying so hard to make life as regular as possible. Wherever I can, I do what I can. I'm glad to see it's working to a fairly good degree.

"Mom my Ride"

This is worth a chuckle or two. It is dedicted, with love, to all my "Mom" friends who drive mini-vans.

http://www.youtube.com/watch?v=HEFE3B0Rje0

One of those weeks....

It's been a while since I've blogged - it's just been such an incredibly busy week. Ryan had a doctor's appointment on Monday for his 4-6 year old shots. He was such a trooper for everything - he actually doesn't mind going to the doctor. Although, he did scream for about 10 seconds when he got the needle - I don't blame him there!! Then we drove 1/2 hour to Toys'r'us to get Kurtis's birthday presents. One of the sales ladies just made my day (NOT!) by referring to me as Ryan's grandmother. Oh joy! I know I'm really gray, but I thought it was a "chic" gray - not an Oma gray! Seriously, I'm not too upset - I don't think she really got a good look at me and didn't see my wrinkle free skin LOL - and in all fairness, I guess I could be Ryan's grandmother if I had a baby when I was VERY young.
On Tuesday, I spent the morning doing bookkeeping for Tom and the afternoon I was able to go with Kurtis on his class trip. We went to the local theatre to see a play (that was fairly 'artsy' and mostly above the kids' heads). I was excited that I was finally able to make a class trip as all previous ones coincided with recovery from chemos. On Tuesday afternoon, Kurtis and I did MORE baking - we made cupcakes to take to his class in celebration of his birthday. However, unlike the previous baking experiences, this one was just a cake mix and tinned frosting. I have to admit that it tasted better than from scratch! They were YUMMO (can you tell I've been watching Rachel Ray?? I can only take her in very small doses as she's just a bit too much. I switch between her and Ellen). On Tuesday night, we had a Guelph Down syndrome group meeting and were able to meet two new families. Their babies were both very young - 6 months and 5 months - and soooo adorable. Now, I may be prejudiced, but I honestly think babies with Down syndrome are the cutest babies in the world. There is just something about their faces that makes them gorgeous. It was such a treat to meet these babies and their parents and get to chat a bit. How it brings back memories.......
On Wednesday, I had some errands to run and our normal afternoon activity of speech therapy (another 1/2 hour drive). It was also Kurtis's birthday - I can't believe he's 8! I probably say this every year, but this year, 8 really does seem big.... it's only 2 more years until he's 10! The big hit gift was an Air Hog remote control airplane - my goodness, he was thrilled with it. I couldn't have missed buying it though - everytime he saw it on TV, he yelled at me to come see what he wanted for his birthday. It's so cool to see the uncontained excitement and joy in a child - he really was thrilled! The weather was starting to become nice so we spent the evening playing outside at the park with the new toy. FUN FUN FUN! The rest of the week involved more activities for the kids, more bookkeeping for Tom and more errands. I haven't managed to fit in my nap all week - poor me. (For those of you who don't know, I nap EVERY day. I need that nap as I get very tired otherwise). I did survive without my naps, but I was incredibly tired at night by the time the kids got to bed. I even fell asleep with them last night at 8:00.

Well,,, I'm rambling a bit here - guess that's what you get when you blog when you're tired. I'm a bit more tired than usual as Ryan was awake for about 3 hours last night. In my ramblings above, I neglected to mention that Ryan's behaviour was ATROCIOUS this week - disobeying me at every turn, not able to focus at school, whiny, obstinate and just generally frustrating to his mother. I should have known something was physically wrong and yup, last night we discover the poor kid has an ear infection. He never complained but something was probably bothering him over the past few days. And it probably explains the behaviour all this week - he was fighting that infection and was just "off". So, now Ryan is fast asleep - his head hit the pillow and he was out about 10 seconds later. I'm off to watch a movie with my hubby and then I think it's an early night for me. If you've made it this far, thanks for reading this rambling blog entry!

It's a bird..... it's a plane....

it's jumping boy!

Can you say "NO FEAR"??


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Am I happy or ticked off?

First of all, let me say that this is NOT some type of plea for money. NOT AT ALL. Let's get that straight and out of the way.

I'm on some medication that is quite expensive, and because Tom is self-employed, we don't have drug coverage (on the plus side, we do claim the medical expenses on our tax returns so we do get some of it back in the form of a healthy refund). The anti-emetic pills I'm on when I have chemo are quite expensive and then I'm on some pain medication that also gets a bit pricey. Add a few other medications here and there (other anti-emetics, gastro pills etc) and, let's just say I'm helping to buy my pharmacist a new Mercedes Benz.

I had a meeting with my Community Care Access Centre (CCAC) co-ordinator today. CCAC is the organization through which I get my home care nurse. The nurse disconnects my chemotherapy pump. Anyways, after she left, she called back and said, it popped in her head that we might not have drug coverage because Tom is self-employed. When I replied that no, we don't have coverage, she said that, because I'm being seen by a home care nurse, and we don't have drug coverage, we are eligible for a special card that will cover the cost of drugs - IF the drugs relate to the reason I have a home care nurse come in (which, of course, they do). So, she is processing the card today, and effective immediately, we have drug coverage for me.

For that, I'm very very happy.

I'm also very very angry.

I have been seeing a home care nurse now for 7.5 months. Why has NO ONE mentioned this before? I don't blame the nurse, that's not something they would think to ask. But why did my co-ordinator who first come in not mention it? You think that would be something on a checklist to ask.... quite basic in my opinion. It's not something I would ever think to ask..... why would the government offer us free drugs???

So that's 7 months of drugs that are not covered.

And, no, they will not cover retroactively. And for that, I'm really ticked.

____________________________________

One other piece of good news...

Ryan is eligible for funding from another social services department. This funding helps us hire someone to work with Ryan approximately 2 hours a week. We can also use those funds for respite (instead of using them for Ryan's contract worker). Respite allows me to pay for a babysitter for Ryan OR Kurtis and have that covered. I have fought for more than 2 hours a week for a few years now - it really isn't enough for respite AND Ryan's contract worker. I have asked for 6 hours a week hoping that I'd get 4. But no, they always keep it at 2.

Well, I received my letter today for 2007/2008 funding....drum roll please....

4 HOURS PER WEEK! Yahoo! Still not enough, but it's an improvement! I guess playing the cancer card helped this time. ;) That will allow us, when Ryan starts school full-time in September, to have someone come in 2-4 times a week to help him with school work.

Belated Anniversary to me!

I've been blogging for over a year now - April 3, 2006 was my first post here. It's amazing how fast a year has gone, isn't it?

So, I'm turning the tables on this post.

For a year, you've learned about me, my battle with the beast known as cancer, my family ... our ups and our downs.

Now... What about you? I see that I have a lot of visitors coming to check in.... and I really do appreciate it. But who are you? Post (use the anonymous tool and just your first name if you want) and let me know who you are! If you don't feel comfortable posting on a public site, email me. My email address is annettel100@hotmail.com.

Some people have told me they read my blog but don't post a comment because they're afraid it won't sound very good or very nice. As someone on another blog said: "Forget nice, this is cancer." PLEASE don't worry about how it sounds - I don't care. What matters to me is the strength I gain from your comments. You really have no idea how much it means to me to receive communication in any form: a phone call, a card, a meal, a snack, A POST ON MY BLOG! I can't beat this cancer alone - I need strength from others.

Master Baker

Kurtis picked up a book at his school library a few weeks ago about baking. It's a child's baking book - full of great pictures and great recipes that a kid would want to make. It grabbed his attention and he asked if we could make cookies. I promised him we could and maybe we could even do them Wednesday after school. (Oh... this is the week we got back from St. Lucia - we got back on Monday night and Kurtis brought home the book on Tuesday afternoon). On Wednesday afternoon, he jumps into the car after school and declares "I asked Miss C. if I could bring in cookies for the class and she said it's OK - can we Mom?" .... sure - a double recipe - no problem! Since we weren't doing much anyways that evening, I decided we might as well do them. Well, part of the baking process is the shopping. Kurtis expected ME to do it all by myself, but I thought it was a good learning experience for him to participate in the shopping. So, by the time we got home and unpacked the groceries, it was almost 5:00 pm. In any event, we made two batches of chocolate and vanilla shortbread cookies - rolled into spirals to make owls, shaped into squares and put together to make a checkerboard square cookie and circle cookies (white with chocolate on the outside) with a long stick on the outside so they look like lollipops. It was actually a great experience for us both. Me...always being the one to try to find a teaching opportunity... realized baking is a great teaching tool: a double recipe makes ample opportunities to teach math ( multiplication, addition and fractions). It is also great to talk about the chemistry involved in the baking process. Kurtis was so proud to bring them to class - and I gotta say nearly the whole double batch went!

So, the next thing I promised was that we would make a dinosaur cake on the weekend. No packaged cake mix here... nope, we had to do it from scratch! Now, first of all, I had a discussion with Kurtis about the appearance of the cake. I told him that the people who made the book spend many, many, MANY hours making the cake look just perfect and JUST like a dinosuar.... and since we didn't have that much time, it was unlikely ours would look like that. Also, their recipe called for homemade marizpan to be made in order to shape the spikes for the back.... well, that just wasn't going to happen - primarily because no one likes marzipan in our household. So, we worked hard on our cake that afternoon. We baked, we cut the cake according to the pictures, we made a very delicious buttercream frosting and dyed it green. And out came our beautiful "dinosaur". Let's just say, Kurtis was pleased with the outcome and that's all the really matters, right?

We brought the cake to a get together with some friends the next day. With 8 adults and 8 kids, we demolished a fair chunk of the cake (which Kurtis was NOT pleased with - he was hoping for a lot more leftovers).

And Kurtis made us photocopy a lot of the pages of the book as he hopes to have many more baking projects in the near future.

So, after all that build-up, I can't just leave you without a picture, now can I??? (The toothpicks were left in after transport)

Update - April 10

So.. here I am, 8 days later. Things went pretty good for the first 3-4 days. No anticipatory nausea... in fact, no nausea at all. And my energy was pretty good too. Thank you for your prayers - they worked! Then Sunday hit... nausea and extreme fatigue again. I've said it before, and I'll likely say it again, this is so frustrating!!! I wish I could figure out what is going on! Why do I feel half decent for 3-5 days and then feel worse on day 6? Yesterday and today I'm still dealing with the fatigue and trying to go with the flow and not get too upset about it.

Nuff about that.

CT Scan results: I had a scan done at the beginning of March and found out the results last week. The same... as the time before...and the time before that...and the time before that. So, we continue with the chemo regime and continue to fight the beast.


I was able to make it out long enough yesterday to attend the funeral of a long-time friend of my parents. He passed away after his battle with cancer at the age of 73. Although there was obviously sadness at the funeral, there was also such incredible hope that came through. Having just celebrated Easter, we were reminded how Jesus has conquered Death. Cancer, although it may take our mortal body, has no affect on our eternal life - Jesus made sure of that, once and for all, by dying for us. How blessed we are. At the funeral, we recited a "creed" of our church (Question and answer 1). I'm sharing it here as it is so important to me and the words mean the world to me:

Question: What is your only comfort in life and in death?
Answer: That I am not my own, but belong - body and soul, in life and in death - to my faithful Saviour Jesus Christ. He has fully paid for all my sins with His precious blood and has set me free from the tyranny of the devil. He also watches over me in such a way that not a hair can fall from head without the will of my Father in heaven; in fact, all things must work together for my salvation. Because I belong to Him, Christ, by his Holy Spirit, assures me of eternal life and makes me wholeheartedly willing and ready from now on to live for Him.

Chemo Time Again

Please pray for me today, if you can. Pray that this chemo is "easy", pray for emotional strength for me to get through this and for physical strength as well. Although this chemo is relatively easy from the nausea point of view, the fatigue I experience really gets me down and last time I found it very difficult. I know it's going to be 5 days of fatigue and sleeping, and that by Sunday I'll be OK, but it's still hard to get through those 5 days. I'm also experiencing strong anticipatory nausea. This means that I'm getting sick even before I get my chemo. Last time I threw up once before I got my chemo and once fairly soon after (before the chemo really had a chance to do anything). Pray for this to go away.

I also ask that you pray for Marissa. I actually don't know Marissa, other than through the blog, but my Dad knows her husband and her father-in-law. She is battling breast cancer while also having 3 young children to take care of. She has chemo today as well.

Adventures in the Middle of the Night

Boy, are we having fun with Ryan in the middle of the night!! As Kurtis says, "NOT!"

Over the past few months, Ryan has started to become afraid of the dark. So, occassionally he will wake up, go into the room that is off his bedroom, turn on the light and go back to bed. No problem there. But, in the past month or so, he's decided that's not enough light. So, now, he goes throughout the house and turns EVERY SINGLE light on....and I do mean every light - hall lights, dining room light, the light in Kurtis's bedroom, kitchen light, bathroom light, AND the porch light! Then he comes into our bedroom and says it's time to wake up. This is around 3:00 - 4:00 in the morning, by the way.

Last night I was woken up at 3:30 am by a little boy asking for help with his socks. I look and there is Ryan.... fully dressed for the day. He has taken his pj's and his night time pullup off, put his pj's where they belong, put the pullup in the diaper genie, gotten clothes out of the drawers and fully dressed himself. He usually puts his own socks on too...but I guess at 3:30 he figured he needed some help! I had a bit of a hard time convincing him it wasn't time to get up and that we needed to sleep some more.

Thank goodness we have a lock on the door that he can't reach - othewise he just might have walked himself to school!

I've been tagged (a long time ago)

Nicole tagged me a while ago.... I'm just now getting around to it. I'm supposed to write my 5 favourite things about feminism. So, here goes.

1. Equal pay for equal work. I remember Mom telling me that, when she worked at the bank, a man she worked with received more money than her, for the exact same job, because "he had a family to provide for". How unfair was that?

2. We have our choice of careers.... homemakers to race car drivers. Doctors, teachers, accountants...nothing is off limits anymore.

3. Men are getting more in touch with their "feminine" side... They can do housework, cook dinner, change a diaper and no one cares. I see this as a side effect of feminism because women started expecting the men in their lives to do more - especially where women are bringing home the bacon!

4. Not changing your last name when you get married is OK. I did change my last name, but I think I might keep it if I would ever have the choice again.

That's all for now...