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Sunday, December 29, 2013

Stroke Deficits

I hope everyone had a Merry Christmas (if you celebrate) and were able to have some fun and get some relaxation in. I had a great Christmas, spent with DH, the two boys, and my parents. It was fun and enjoyable, and pretty much stress-free (though having to give Evan two time-outs on Christmas day wasn't a highlight!) .

It's been about 2.5 months since my stroke. I noticed a lot of improvements until my surgery two weeks ago, then that week was pretty awful. It was like I was regressing. Thankfully, the doctor warned us that might happen, and things started to get back on track and things have been going rather well in the last week or so.  I feel stronger, more energetic, and just more "together" in general. That being said, there are still several deficits I'm dealing with:

- Lower right quadrant field cut in my eyesight
- Speech issues (minor, but I notice it, especially when I'm tired)
- Fine motor skills with my right hand (like typing)
- Spelling in written communication
- Feeling foggy (comparable to when you're over-tired)
- Multi-tasking
- Issues with orientation (for example: figuring which way to orient a sock to get it on straight)
- Issues reading and/or writing numbers (especially on the computer)
- Easily frustrated, especially with the kids.

It will be interesting to see how these deficits evolve over the next few weeks and months, or if new ones appear. The doctors said full recovery would take 6-12 months, but it could be a life-time in the making.

The good thing is I'm feeling more like myself, and more confident that I will be able to live a "normal" life. Here's hoping all the worst is behind us now, and that things keep improving from here on out.

Monday, December 23, 2013

11 Weeks

Carter has been with us for 11 weeks now! It's amazing how much he's grown and changed already! I forgot how fast babies change!

- At his 2 month check up, all his measurements were around the 93rd percentile! Such a big boy!
- We've had to break out the 3-6 month sleepers already!
- He's sleeping better at night. Usually 5-6 hour stretches, but has graced us with 8 hour stretches a couple of times. We're hoping it keeps getting better, because we sure like our sleep!
- He usually has 2-3 good naps during the day, but they seem to be at random times still. So, he hasn't put himself on a schedule yet.
- He's having so much more active wakeful time now! He loves when we talk to him and read him books.
- He gives lots of smiles, especially when we're interacting with him! He gives this shy smile that's just so cute.
- He's found the TV a few times, but doesn't watch for long.
- He loves watching Evan and DH play!
- He likes sitting at the table with us when we're eating.
- He's so strong and can hold his head up well.
- He gets so angry when he's hungry! I think he might have a temper ;)
- He has found his hands and loves to chew on them (and his arms too).

Looking forward to what the next few weeks will bring!

Thanks to my friend Amy for this amazing photo!

Wednesday, December 18, 2013

Enough!

Okay, I had my surgery on Monday and all went well. I was even home the next day, so yippee! Horrray! Everything is amazing!!! I feel perfect, and everything is bliss and wonderful!! La! La! La!

So...not...if you can't read sarcasm in that. I'm so done with all of this. Enough already. I wave my white flag.

I think I've had a pretty good attitude through all of this, but I'm just done. I'm going to say it: this is just not fair. This stuff doesn't happen to me. It's something you read about and be glad it's not you or a loved one.

And now, at the so-called "end", I'm sitting at the kitchen table in a complete fog, with a hugely swollen face (looking like I just finished a few rounds in the ring), and not having any energy to interact with my family.

This plain just sucks.

/end pity party for now

Friday, December 13, 2013

The Next Stage

The next big step in my recover from my stroke is to have surgery to get my bone flap put back in (the part of my skull that was removed in order to gain access to my brain to remove the bleed).

Tentatively, this surgery is scheduled for this coming Monday (Dec. 16th)! Ack! This came on rather suddenly at my appointment with the neurosurgeon on Dec. 6th. I was under the impression it would be done in January sometime, so doing it so soon was a bit of a shock.

And, as weird as it might sound, I'm not actually too nervous about the surgery itself, but about the hospital stay afterwards (which is only supposed to be 1-2 days (!! )). This is mostly because of my experience in the hospital after my last surgery. I did not write about that experience, but it was not a positive one. I remember feeling like I was treated like a child by the staff. I distinctly remember one of the nurses spoon feeding me (when I could feed myself), telling all my visitors about my..um...washroom business, and generally having no dignity or privacy. I get angry even thinking about it now. Yes, I was a stroke patient, but I was also a person, and didn't feel like I was treated with respect. I also felt ignored by many people, especially the doctors and specialists who seemed to stream in and out of the room and were only giving/getting information to/from my husband or other family members. I felt invisible.

I am much stronger now than I was then, but I find myself pre-emptively getting my back up about this hospital stay. I'll be dammed if I don't have a voice this time! I've been envisioning how I'm gong to be telling people exactly just how  things are going to go and when. Thankfully, after talking to my social worker, I've realized that might not be the best attitude to go into this with! Yes, I still want to make sure I use my voice if there is something that feels wrong or I'm uncomfortable with, but I don't plan on telling people off the whole time like I imagine!

Hopefully all will go well, and a few days later I'll be home with a normal shaped head. Wish me luck!

As an aside, I've been trying to find something to buy myself to commemorate this time in my life. I was thinking something like this neuron necklace:  If you have any ideas, please leave them in the comments!

Wednesday, December 11, 2013

It's DONE! Well, stroke-done.

I started Carter's baby blanket in April and just finished this past weekend. My goal was to finish it before he was born, but with all that has happened, I figure I get a pass.


Fig. 1: The "complete" blanket

Unfortunately, it's not as nice as it could have been if I didn't try to finish it a week after my stroke (and then stopped and started again once I knew what I was doing). So, there is now a physical reminder in the blanket which will be forever known as the stroke line.

Fig. 2: The "stroke line" is clearly visibly  near the top.

Oh well... at least the end user is still happy with the product.

 Fig. 3: Carter snuggled in the mommy-made blanket.

Tuesday, December 10, 2013

An Award

Today I received an Outreach Award for my efforts over  the last two years! It is nice that my work is being recognized, and that people see the value in education and outreach :)

The nicer thing was seeing so many people that I worked with and receiving so many warm greetings and hugs.  It's nice to know so many people are following how I'm doing and that they care so much. It's nice to feel loved and supported :)

Many people told me today that they have been reading my blog - so welcome to all my new readers! Please feel free to leave comments!

Wednesday, December 4, 2013

This Is Me

Fig. 1: Minutes after Carter was born during a home water birth.

Fig. 2: Happy morning with both kids a couple days after Carter was born.

Fig. 3: Cuddles with Carter a few days after my surgery. They shaved the left side of my hair to remove essentially the left portion of my skull from the crown of my head to my ear. You can see the staples along the top of my head. 

Fig. 4: a better look at the staples.  Those were taken our the day  I was discharged from the hospital and went to the rehab centre. 


Fig. 5: Posing with Evan at his 3rd birthday celebration at home (Nov. 2)! You can see how my head is misshapen on the left side (closer to Evan) above the ear (that's from the swelling of my brain, which is going down). My head will look normal after they replace the skull on that side - we'll hopefully find out soon when that surgery will be done. 

Fig. 6: cuddles with Carter at home!! Isn't my new hairstyle the best (I find it hard looking at myself now)? I'm looking forward to having my long hair back (so is Evan, who uses it like a security blanket). 

Monday, December 2, 2013

Chills

The time between going into the ER and a couple days after my brain surgery is basically gone from my memory, except for flashes. During that time, I  was mostly unaware of what was going on and unresponsive when anyone tried to speak to me (or so I'm told, but I can't say for sure).

One lucid moment often flashes in my memory and gives me the chills: at one point, I don't know when or where, someone asked me if I wanted them to do "all they could do" -- not explaining any further, but the implications were clear.  They then asked me if there was anyone else I wanted involved in that decision, and I distinctly remember answering "yes, my husband."

This coupled with  (later filled in by family members):

- The doctors would only consider surgery if the situation became dire
- The brain surgeons told DH I has an 85% chance of making it
- Each of my family members and lots of others have told me I'm lucky to be here

I really put all of this together my first weekend home (Nov. 2), and finally realized that I very well could have died. DIED. That reality and the implications keep hitting me now and then, and I'm sure will continue to do so for some time. Sometimes it's scary as hell, and other times just makes me feel thankful.

Sunday, December 1, 2013

Growing Up

There have been so many changes in Evan lately - he is no longer a toddler and definitely a little boy.

Watching him play independently is amazing - he uses voices, sound effects, comes up with crazy scenarios, wants us to "watch him" or "look at this!".

Playing with him is even more fun. The other day, we were playing with his cars, and making them jump over barriers, and getting them to bash into each other, and getting them to race. It was like I got to play like a little boy too . Watching him and DH play is hilarious. They just have so much fun together, and I love seeing them rough-house, laughing hysterically, and just being boys together. I cant wait until Carter gets in the mix too!

His sense of humour is developing. I love seeing him laugh when he sees something funny on TV or something - it's so cool that he gets verbal humour! It's also awesome when he says/does something funny on purpose  - like when he changes the words of a story, or makes "mommy's angry face"! LOL!

Some of the things he says and does just makes me realize he's getting older.

- He can get undressed and dressed all by himself
- He can go to the bathroom by himself (don't worry, I won't get int potty training details here!)
- Sometimes when we ask him to do something is he says "um, just a minute, I'm busy"
- He loves to negotiate, and always starts with "Well, how about...?" (with the "well" dragged out super long). 
- He's a big fan of playing games on the iPad
- He loves helping with adult chores - like shovelling the driveway, putting away laundry, and raking leaves 
- Recent conversation after him seeing a commercial for a certain toy:

"Mom, I want that"
"Well, maybe Santa will bring it for you"
"But, we can just go to the toy store and buy it"
"We can't just spend money anytime you want something"
"But, it's okay, I have money" (he goes to DH's bowl where he keeps his keys and change and grabs the coins) "see? Now I have money. Let's go to the toy store"
"Evan, they might not have it there"
"Well, we can just go to another store."
Sigh!!

And my favourite: he tells me and DH he loves us just randomly :)

He has an amazing memory. He remembers that I broke a latch on a container that holds a set of his blocks when he was about a year old! He's also really good at playing memory with cards (he's way better than I am!

I think that it's awesome he tells me about his day when he gets home, and that we can have extended conversations.


Evan being pretty happy with himself after getting dressed for daycare on his own :)