She kinda did it!!

Project 365 - Week 4

Jan 22 - Playing with Mommy's old toys....Hello Muppet Babies!

Jan 23 - Sisters hanging out

Jan 24 - My sad attempt at getting my toddler to eat PB.  Mission Failed.

Jan 25 - Watching Kideos.com

Jan 26 - Great mail day...3 things from Babysteals.  (The sweater is awesome!)

Jan 27 - Not impressed that her swimclass is over

Jan 28 - Nicole's new patchtime toy

My MS story

The short and sweet version of my MS story....3 years ago, just a couple of weeks after getting back from our honeymoon I developed a ridiculously horrible pain in my left eye.  The kinda pain where I actually had to close my eye to turn my head.  It lasted a couple of days.  One day while we were out shopping for Christmas ornaments for our very first tree it seemed like something was in my eye.  You know, like when you wake up in the morning and have gunk in your eye.  Except that I couldn't rub it away.  I didn't really think too much of any of it.  Then one day at work I started to lose vision in my eye.  Big time.  Everything was super blurry.  My awesome coworkers talked me into going downstairs to the Emergency Room.  So I did.  And so it began.  I was sent to the Ophthalmologist immediately who did a bunch of testing and told me...you can't see, and I can't see anything wrong with your eye....you need to go back to the ER and tell them it's optic neuritis.  I'll never forget the drive back to the hospital.  It was cold, and snowy and my tears were flowing.  You know how it goes, I had googled all my symptoms and pretty much self diagnosed myself....and when I heard the words optic neuritis I knew it meant MS. 
Optic neuritis is an inflammation of the optic nerve.  MS eats away at the nerve sheath so my brain can't get signals from my eye.  Sort of like the cable of a TV being destroyed.  The TV works, but can't send messages along that cable.    Most cases resolve within a few weeks.  Unfortunately, I was one of the few who never regained vision. 
Following my vision loss I had numerous MRIs and a spinal tap (if I can add, without freezing, ouch!), which all showed signs of MS.  So I have been given that as a diagnosis.  I knew from my research that a MS diagnosis requires more than one symptom so, technically speaking,  I have clinically isolated syndrome.  That is, I have had one MS attack (optic neuritis) and have a positive MRI for MS.  To be officially diagnosed I have to have another relapse.  I asked my neurologist about this....I've only had one thing happen, do I truly have MS? 
He responded with does it really matter?  I knew what he meant.  Sooner or later it will be official.

So I wait.  I know it will come, I just don't know when.  51% of those with optic neuritis and a positive MRI will develop MS within 5 years.  And so like I said, I wait.  And this is also the reason I will poke myself every night.  I will do anything I can to stay healthy for my family.
Huh? Poke myself? Yup.  There is no cure for MS, but there are certainly drugs to treat it.  All of which, may I add, are injections.

After having my first baby, I tried one of the drugs.  It was horrible.  The injections were only three times a week, but brutally painful and left me feeling like I had been hit by a truck every other day.  I was taking so much Ibuprofen I thought I should buy shares.  On top of that I needed to have my liver checked through bloodwork every month.  My liver did not enjoy the drug.  After 10 months of trying to get my body adjusted to the drug I threw in the towel.
I agreed to try a different one...Copaxone...following the birth of Nicole.  I was suppose to start immediately after having her, since the number of relapses increase in the first three months postpartum.  Needless to say there were a lot of other things to deal with without throwing needles into the mix.  Now that things have settled I think I'm as ready as I will ever be.  So I filled my prescription.

Copaxone is injected subcutaneously every day.  Yup, every day.  This is the part that sucks.  The bright side is that I should not have any of those awful flu-like symptoms found with the other drug.  So this is what awaits me every night :

I don't actually lay it all out like this every night but I thought it was kinda funny.  It's part of the package the company sends.  The alcohol swab is missing cause it was recalled.  Also kinda funny.

The injection itself hasn't been all that painful, however, immediately afterwards and for approximately 20 mins there is a horrible stinging feeling that can only be compared to a beesting.  It caught me off guard the first time and I admit I shed a few tears.  The second time I just kept myself busy and told myself it would pass.  A shot of my injection site reaction, a little red (ok like 3 inches of red), itchy, and a mosquito type welt:

Thankfully, by morning it's all gone.  With the other drug I was bruised for months.  So, so far, all is great.  I can't believe I am actually saying that.  Tonight will be the first night I will be doing it alone.  Wish me luck!

Project 365 - Week 3

 





Jan 15 - Nicole's 'do

Jan 16 - Cat in the Hat baby shower

 Jan 17 - Nicole's new purple room

Jan 18 - A walk on a rainy winter day

Jan 19 - Learning to roll over

Jan 20 - A visit to IKEA

Jan 21 - Friday night dinner

 

Patching is so relaxing!

A shot of Nicole in her favorite patchtime activity...SLEEPING!!

Thankful.

It's been a little while since I've updated on Nicole's progress.  I guess that's a good thing.  No news is good news isn't it?  We have finally seemed to get into a rhythm and Nicole's eye issue really doesn't seem to be much of an issue right now.  I know things probably won't stay so static as time passes but for now we are happy and thankful.  The contact seems to go in pretty smoothly on most days.  I do find that as time is passing Nicole is less likely to lay still for me to get the job done.  Usually in the morning she is so excited and happy that she is laughing away and trying to turn over and definitely not cooperating.  Taking the contact out has never really been an issue.  I wait till she is fast asleep and then pop it out.  Patchtime, ugh.  What more can I say.  She definitely is not impressed when the patch goes on.  She usually fusses and then falls asleep.  It takes 6 hours of the day to get 2 hours of awake time in.  Then when the patch comes off she is super happy.  Did I mention...ugh.  We will be heading to the Clinic in a couple of weeks for a check so we'll see what the docs have to say.
Today has been a solemn day in our city as our fallen police officer Sgt. Ryan Russell was laid to rest.  I would like to take this opportunity to thank all the brave men and women of our emergency services who are out there everyday taking good care of us.  You are all awesome!

Project 365 - Week 2

So far so good....2 weeks completed!! =)



Jan 8 - watching Dad clean up after the first snowfall





Jan 9 - Squirrels enjoyed Lilia's bread

  


Jan 10 - Cool building blocks




Jan 11 - Lilia's first haircut




Jan 12 - Making snowangels




Jan 13 - Making dinner




Jan 13b - Checking out the fish






Jan 14 - Trying not to get caught



 

Oops

Today I have learned a lesson about life as a mom to an aphakic baby.  If you are going to make pasta sauce or any other yummy meal with hot peppers, please remember to use gloves.  It is three hours later, with many  handwashes completed, and my fingers still burn.  LOL.  Thankfully, my hubby is home to take out that contact tonight!  Hope the pasta sauce was worth it!! =)

Lilia's First Haircut!

Today was the day I finally did it.  I took my 2 year old baby in for her first ever haircut!  We took her in for the full experience at Melonhead's.  I don't know who had more fun, me or her!  When we first got there they let her warm up and try out all the fancy chairs which included Thomas the train, a horse, a police motorcycle, and a rocket to name a few. 

She finally chose (with a little help!) the girlie flowery car.  Good job, Lilia! 

Dora the hairdresser gave Lilia a bucket full of toys to play with in the car and changed the tv channel from news to Treehouse TV.  Then she began to clip clip clip all that fine blonde hair.  Truth be told I fought back the tears, ok maybe not, but I couldn't believe my little girl was growin' up. 

To finish the cut she got some coconut scented hair gel, a ponytail secured with a star clip, and a sprinkling of princess sparkles.  Then for being such a good girl, Lilia received a loonie (for all my American friends....a Canadian dollar coin) to use in the motorized pony at the front of the store (we then had to kick in our own loonie as goodness knows one go is never enough!). 

Whoever came up with this place is a genius!   Lilia left with a gorgeous look and a certificate (with photo of the day and her locks attached) to go along with her visit.  Must say we had a great time!





Before



After



Project 365 - The Beginning

It is the beginning of a new and fabulous year....and with that comes lists of resolutions and things to be completed in the next 365 days.  Last year I was introduced to a really cool idea called Project 365.  It is basically taking a picture a day to document the year.  I made it to mid-February. =)
This year I am trying again!! Now that I have this platform to showcase my attempts I think I will be much more likely to keep on it!  Let's see how well I do!
Here is my first week, as expected from a mom...lots of pics of my kids! =)




Jan 1 - Enjoying lunch on New Year's Day






Jan 2 - Naptime






Jan 3 - Someone found their thumb






Jan 4 - Being entertained during patchtime






Jan 5 - Look who's 3 months old!






Jan 6 - Coloring time



 


Jan 7 - Staying entertained at the restaurant...thank God for Ipod Apps!

 

Patch Patch Patch

Last Thursday our little Nicole got fitted for a contact lens and we were told to go home and practise for 7-10 days before seeing Dr. Tehrani in regards to patching.  Well, by the time we got home from the appointment there was a message telling us to come in today.  So as a result...ninth visit to the Eye Clinic completed today...and everything is positive again!  (And can you believe it we got in before our scheduled time? Must've been because I brought some of my squares to crochet!)
Dr. Henderson, who assisted in Nicole's surgery, examined her eye:

Taking a look



Here is the update:  Her pupil is still dilated from Atropine drops that she was taking but he thinks some of that will still clear.  He thinks she may have some astigmatism which also may correct itself.  It appears she has developed nystygmus (shaking eye) which will not correct itself.  As well, her eye has turned in slightly.  These are both due to the fact that she has spent nearly 3 months without usable vision.  Mike and I can't really see the nystygmus so we hope it is not very obvious.  As for the turn in her eye, routine is to wait until she has acquired as much vision as possible and then if it hasn't corrected to fix it surgically.  One step at a time though.  Our job now is to get her seeing out of that eye of hers! So today we have started the patching.  Two hours a day, and we have to stimulate her vision as much as possible during that time.  It was hard for me to cover her eye knowing that she would not be able to see but I just kept telling myself that we are doing this for her and hopefully one day she will be thankful (not for a very long time though I suspect ha ha).

My first time wearing a patch!



Mommy makes sure my patch matches my outfit! =)

A quick mention on how the contact inserting is going.  Well, not too too bad I guess.  I have successfully put it in while Nicole has been awake twice.  I have figured out that if I flip her on her left side she really has nowhere to move her head and I can slip the lens in.  I'll be honest, it ain't pretty.  It takes me a few goes to get that sucker in but she is quite patient with me.  I suspect this will change too...but hopefully by that time I will be a pro and I'll get it in on the first go!  I have only gotten the lens out once.  It isn't smooth either but hey, it's only been four days!  Next appointment is in four weeks and apparently every 4 weeks for the first six months.  We definitely are spending a lot of time at the Clinic.  You know it's bad when you bump into the doctors at Tim Horton's and they offer to buy you coffee...or you have entire conversations with the secretary on her way to lunch.  LOL.  Got to find the humor in it!