Tuesday, May 26, 2009

A Bright Spot

In my dreary depressing day yesterday, there was a lovely bright spot.  Her name is Joanne.

Joanne is an Alberta artist and heard about Dawsyn through a mutual friend's blog.  She found a link to my blog through Cynthia's blog and then linked us to her virtual world on her blog!  I LOVE technology!!

Joanne contact me and offered one of her original paintings for our live auction.  It's a beautiful watercolor called "Fiesta Pears".   I'm so excited for you all to see it for yourselves ... but I'm a techno-idiot so can't post a picture here.

Joanne drove into Calgary to meet me at Alberta Children's Hospital yesterday afternoon to deliver this picture.   She is every bit as lovely as the pictures she paint!  After a harrowing couple of hours with Dawsyn, her brief visit encouraged my spirit and truly brightened my day!  Thank you, Joanne!!

Please visit her website at www.joannegiesbrecht.com or her blog at www.thistledown-arts.blogspot.com.  While you're doing that, I may just call Cynthia for a blogspot tutorial!!

A DAY IN THE LIFE

Yesterday was Dawsyn's monthly IVIG (Intravenous Immunoglobulin) Treatment.  We sent Matthew off to school and headed off to Alberta Children's Hospital for the day.  Last month the treatment went really smoothly ... get the IV set up, watch some Dora the Explorer, have some lunch and a little nap, watch a more Dora and go home.  We had convinced the doctor to let us try the treatment without benadryl to prevent an allergic reaction.  She did great!!  That's what we hoped for again.

All started well.  Dawsyn was in a great mood and bossy as usual.  She advised the nurses on how to do their jobs ... after all, she's been getting IV's for 8 years now, she knows the routine!  "Squeeze my arm with that thingy, use this vein here, it's looking particularly juicy today, wrap it all up tight incase I decide to take it all out myself before the treatment's over!"  Routine!

Unfortunately, after about 1 1/2 hours of watching DVD's, playing Go Fish and being all together pleasant, Dawsyn started to cough.  I told the nurses not to worry, she is often phlemy ... it's not an allergic reaction THIS time.  Then the wheezing started and the gig was up!  The dreaded benadryl was drawn up and injected through the IV site and within 30 seconds all H - E - double hockey sticks had broken loose!

The screaming, the kicking, the hitting, the biting and the fighting.  She wants to be held and comforted but is hyper-sensitive so it doesn't feel good to be touched.  Hold me ... don't touch me ... hold me ... don't touch me ... and all the while screaming as if she's on fire and there is nothing I can do to help her!  Eventually she fell into a fitfull sleep.  When she woke she was less miserable but remained grumpy for the rest of the day.  The ride home was fun.  She would reach over and pinch or hit me and absolutely refused to wear her seatbelt ... we're travelling on the QE2 so I can't exactly pull over to put it back on her every 3 minutes!  She had one more "benadryl melt-down" at bedtime and then she slept well for the night.  

It's not the first time this has happened.  This is Dawsyn's regular reaction to benadryl but there doesn't seem to be anything else to give her for allergic reaction to the immunoglobulin.    Why she didn't react last month but did this month, I don't know but we will have to give her the benadryl as a preventive measure from now on.  That means we can expect this melt-down every time she has a treatment.  

She slept it off and woke up happy and busy this morning.  She found a phone while I brushed my teeth and was making calls by 7:30!  Good thing my friends get up early too!!   Somehow she can meet the next day like nothing's happened and I'm left feeling I've been run over by a train!  

On the bright side ... yes, there is a bright side ... these treatments really seem to be helping.  Since we've started the IVIG treatments in January, we've gone from 12-15 seizures nightly to only one or two every few days.  It's been a remarkable improvement and we're witnessing many positive effects of fewer seizures.  She's learning faster and more easily, she's less sleepy at school, she's less irritable (except for the DAY OF the treatment!) and all-in-all is doing very well.   It also means that we often get to sleep through a whole night without being awakened by a seizure ... 11:00 to 7:00!  What a treat!!  

There have also been some negative positives ... is that possible?  Apparently!  Because Dawsyn is feeling so much better, she is back to being HYPER and has been driving me CRAZY!!  I keep telling myself that it really is a good thing that she's feeling so good but it's been exhausting trying to keep up with her.  We are back to not only having to watch her nonstop but having to DO something with her nonstop.  She's no longer content to sit and play games on her computer or play the piano, she has to have one of us DOING something with her at all times or else she's doing something she shouldn't be.  The biggest temptations lately are the stove, the microwave and the phones.  She likes to crawl up onto the stove and turn it on ... she says she's making macaroni!  She turns the microwave (usually empty) on and lets it run because she likes to count down the numbers with the timer!  That's safer for her than the stove but not so good for the microwave.   The phones!  Well, if you've phoned here lately or if I've phoned you, your number is somewhere in the phone history so don't be surprised if you get a call from her!  She does love to visit.  At 7:37 this morning she called my cousin who lives in the Ukraine!!  His Canadian cell phone number is stored in my cell phone for the times he's back in Canada.  I don't know what kind of message she got but she wasn't very impressed that there wasn't a real people on the other end!  Maybe you should check your messages Al, she may have left you a nasty one about answering when she calls!  By the time we left for school at 8:15, I had taken the phone away from her at least a dozen times.

So, is the trade-off worth it?  Yesterday, holding her and crying because I could do nothing to help her I'd have said a resounding "NO"!  However, today I know she's at school learning to read and socializing with her classmates because she didn't have any seizures last night so I guess I'll have to say "yes".   We'll see what tomorrow holds ... probably a few more phone calls!

Thursday, May 21, 2009

WHAT FUN IT WILL BE!

I've just had a meeting with a few of my fund raising helpers and am so excited!  Our buddy Norm Morris is back from Hawaii and has hit the ground running.  In one morning he accomplished more than I have in a week.  He has found us an auctioneer so now we are having a LIVE auction as well as the silent auction.  He has secured some FABULOUS items for those auctions and is just full of great ideas.  We are so very glad to have him on board!!  Thank you, thank you, Norm.

Zoe and I are doing call-backs on businesses who have offered items for the auction and hope to have ticked off many more boxes on our "To Do" lists by the time the kids get home from school tonight.  

I'm off to see what more can be accomplished today!

Tuesday, May 12, 2009

Fund Raising Plans

We had a meeting tonight to plan our next fund raising event.  It will be a meal and silent auction on June 12, 2009.  The meal is planned and the committee is now approaching businesses and individuals for donations of items for the silent auction.  

To those of you who have already committed to provide an item, our sincerest thanks!  We already have an offer of a brand new set of golf clubs and a painting!!  We are looking forward to seeing lots of fun stuff come in.


Sunday, May 10, 2009

Mother's Day

It was a really nice Mother's Day.  At church, the children all went to the front and sang their own version of "Mama Mia" and all the ladies went home with a rose.  

After church we picked up Zoe and the boys and took them all out for Mother's Day lunch ('cause her hubby had to work).  Lunch was a thank you for a job well done.  This morning, Zoe and her family were up bright and early and headed to Calgary where Zoe ran 5K in the Mother's Day Run. In doing so, she raised over $700 for 4 Paws for Ability!  What a trooper!!  

Once all the money from the past two weeks is submitted, I think we are just under the $5,000CDN mark.   I don't think that's too bad considering we haven't even done an official fund raiser yet!!

The rest of the day was spent just hanging out.  It was nice to have a relaxing day because tomorrow we hit the ground running once again!  

Saturday, May 9, 2009

DIDSBURY SHOW & SHINE

The BBQ fell through but we knew we wouldn't be able to get that news out to everybody so should be there anyway.  We went down at 11 am, set up our table with it's paw print tablecloth and started to distribute information about 4 Paws for Ability and Dawsyn.   We plastered the window behind us with posters with pictures and managed to draw a little attention.  Our goal was no longer to raise $$ so much as raise awareness.  

We handed out puppy stickers to the children and doggie treats to the dogs that went by and gave their respective parents an information package about service dogs specifically highlighting Dawsyn's need.   Many friends dropped by a gave us their donation on the spot which was very encouraging but humbling at the same time.  We understand why fundraising is part of the requirement to receive a 4 Paws dog but it's difficult as well.  On the other hand, I was very excited to give an information package to the Dad of a boy with autism and encourage him to check out the website to see what a service dog could do for his son.  THAT is why they ask us to fund raise.  It not only helps us to raise the required training dollars but also educates others about the availability of service dogs for "untraditional" illnesses.  

A real treat this afternoon was meeting a dog that was very nearly identical to our Moshi. Deacon is a Siberian Husky that differs from Moshi only by being a male and having blue eyes rather than brown.  I actually got tears in my eyes he was so similar.  Even Dawsyn immediately called him Moshi.  We've offered to dog-sit anytime and am hopeful that we will be taken up on that offer!  However, in our excitement over meeting the dog, we forgot to ask his owner what his name was!!  Silly dog people! 

The reporter from the Didsbury Review cancelled our interview for Friday night so that will have to be rescheduled for sometime next week.   We hope to have a full story in the paper along with information about an upcoming fund raiser either this week or next.

Wednesday, May 6, 2009

CHANGE TO "DOGS FOR DAWSYN" FUNDRAISER

I have just been advised that there may have to be some changes to the "Dogs for Dawsyn" fundraiser.  I will post changes as they become available.

Sorry for the confusion.

Tuesday, May 5, 2009

Okay, so I'm not very good at this blogging stuff!  Mostly I think the humdrum of our day to day life is just too boring to subject you all to.

Dawsyn is participating in swimming lessons with her classmates.  This is all well and good except that the swimming class consists of nine seven and eight year olds and one instructor.  It is my humble opinion that one instructor does not have enough eyes, ears or arms to keep track of nine children in three feet of water even if one of those children isn't Dawsyn.  To instruct eight average children PLUS Dawsyn, she would have to possess powers that I can only dream of!!  So, guess who else is taking swimming lesson ... MOM!   Every afternoon for the next two weeks, my precious six hours of "me" time (translation "clean the house, do the laundry, cook the meals, plan a fundraising event or six, take a nap, have coffee with a friend" time) is interrupted with a trip to the swimming pool.  To make matters worse, many other parents also come to the pool.  However, they sit comfortably in the gallery drinking their London Fogs and Cafe Mochas while I am soaking wet trying to keep Dawsyn just a little bit interested in what the instructor is trying to teach them.    Just what I need, an audience!  On the bright side, Dawsyn absolutely LOVES the water and would swim (and I use the term loosely) all day if she were able.  As much as I begrudge the hour from my day, I wouldn't deprive her of the experience for anything.

I have discovered that "Coffee with the Girls" is really an essential part of every week ... everyday if I could get away with it!!  On Tuesday I met a couple of friends for a quick coffee and walked away with a fundraiser planned and ready to be executed by Saturday.  Brilliant minds loaded with good quality caffiene!  

This Saturday, May 9, Didsbury hosts its annual Show and Shine.  Thanks to two local business men who happen to be our friends and neighbours, we will be having a "Dogs for Dawsyn" BBQ on Main Street in the middle of all the Show and Shine traffic.  We are really excited to finally be doing something publicly to get the word out about this new opportunity to help Dawsyn.  

The next two days will be very busy distributing posters and information packets around town to promote the BBQ.

The local newspaper, The Didsbury Review, has asked to do a story about Dawsyn.  This will be a great opportunity to educate our community about Dravet's Syndrome as well as put in a plug for 4 Paws for Ability.  I will post a copy of the article when it is published ... if I can figure out how!!