Saturday, October 31, 2009

Happy Samhain!

Blessed be, and happy halloween! Today is Samhain*, and we're celebrating by going to the cemetery for a picnic and some grave rubbings to honour those we've lost and spend some quiet time with them, remembering how they touched our lives. Samhain is one of my favourite sabbats and I can't wait to celebrate. Skyler and I already had an early morning ritual. Which I should explain is not some sort of crazy thing where we sit in a circle chanting and sacrificing animals. Basically we sat down in the bedroom with some items that belonged to our loved ones and we talked about the people that came before us who died, my grama, my papa, his sister Sophie. Skyler babbled too and gave his input. We talked about how we missed them and how they are always a part of our lives. We gave our thanks for another summer past and all the good things in life, and the hard times that we've overcome, and then we had breakfast!

Tonight we'll probably take him to my moms, my dads, and Chuck's parents just to show off his costume and maybe get some treats for the grown-ups. Other than that it will likely be a quiet evening. Living in an apartment I don't expect we'll have any kids trick or treating. Which sucks because it's so fun to give out candy or to go trick or treating, but I think Skyler is just too little for that still. Maybe next year, hopefully he will be walking by then and can participate and have a bit more fun. What are your plans for halloween? I hope you all have a good one this year!

*In the link, if you scroll down to the bottom-ish where it says Neopaganism it gives you some idea of how Wiccans celebrate it. :)

Wednesday, October 28, 2009

Magic Baby

I don't know how many times I have already said it, but I love our paediatric opthalmologist. Chuck called his office today, after he spent forever on the phone with the tax people. He faxed over the forms to the opthalmologist's receptionist and also the letter we got from the government saying that we didn't qualify. The doctor himself called us back at 5pm (it was amusing because we were on our way to the CNIB for the halloween party) and he was mad. Not at us, but at the stupid situation. He said it was ridiculous that they expected him to get an accurate diagnosis from an infant and that we need the benefit because we are doing everything we possibly can to help our son's visual development. He wanted to know if there was a number he could call to give them a piece of his mind. He said he will fax us back the form saying whatever it needs to say for them to approve us. Yay!

On monday I registered for another ECE class, which I honestly couldn't afford, but I had to do it because I now am classified as an ECE in training, which means a raise and full time hours. Which is a huge plus. I'm going to miss the extra couple hours with Skyler, but I am finding the day goes by quickly in the kinders room. I am getting used to having all these kids calling my name everyday. Asking me to do up their buttons, tie their shoes, settle disputes, look what they can do, and on and on and on. I worry about them wearing their mittens and hats and jackets when we go outside. Today I was done work and I went back to the room to sign myself out, and I saw one of our kinders had left her mitts in the room so I went back outside and gave them to her. I just couldn't stand the thought of her little fingers freezing. I guess I am a mommy at heart.

The CNIB halloween party was a blast, we met more parents of blind kids obviously, we shared stories and promised to meet up again at the Christmas party. Everyone loved our cute little wizard of course. I asked our CNIB OT if she knew the kid we met at the pool, and we described him, she confirmed that she did indeed know who he was and that he had been at the last Christmas party. I hope we'll see him at the christmas party this year! There were lots of activities for the kids to do at the party, including crafts and a tactile room for the kids (with bowls of jello and pudding and grapes, just like a normal halloween party where they blindfold people or turn out the lights except we didn't need the blindfolds for the kids at this party ;P) And there were tons of snacks and goodies. I made a foam ghost with Skyler (I let him play with the stickers and he actually liked the sensation of them sticking to his fingers) and I made a skeleton to decorate the apartment or the daycare centre. Whichever.

And now what you have all been waiting for, my little wizard!
(oh and don't mind the pjs under his robe hehe)

Not Enough

So we got a letter from the government today. Apparently our son just isn't blind enough for them. Which means we don't qualify for the disability tax credit. Isn't that lovely? The letter states that because he is such a young age that the opthalmologist cannot ascertain with 100% certainty that he is legally blind (20/200) he doesn't qualify and we can reapply once we get an accurate diagnosis of legal blindness. Oh and he is on life sustaining drug therapy, but that doesn't qualify either somehow. Life is wonderful. We have to pay out of pocket for all his drugs and therapies that he needs to live and thrive. Of course I do this gladly because I love him more than life itself, but honestly Canada, this is ridiculous. I don't pay taxes out my nose for our healthcare system only for you to tell me that my son is not disabled enough to qualify for any benefits.

On a much more happy note, but also related to his blindness, (which I swear he is actually blind/visually impaired no matter what the government thinks) tomorrow is the CNIB halloween party. I have been looking for an entire month for a cute costume that would fit him, and I have found absolutely nothing. So today I got the brilliant idea that hey, I have a lot of fabric just lying around in my craft closet, and a sewing machine.. You can see where this is going. I thought about making a witch costume, but he is a boy and I can just see how that conversation would go with random people. So what's the next best thing? A wizard! I spent the last 3-4 hours cutting and sewing my little fingers off, and let me say for something I threw together last minute without a pattern or anything it's not too shabby at all. I'm kind of proud of myself. Anyway I shall have to get a picture of him wearing it tomorrow. Hopefully I will find the time to make him a little wizard's hat before the party. I've been working 8 hour days lately so I haven't had much time for anything.

Sunday, October 25, 2009

Through the Eyes of a Child

Spending the day with so many school age children I am reminded of many things that I had forgotten along the way as I became an adult. I had forgotten what it is like to be innocent and curious.

The kids on Friday said something that at first I found very insensitive and upsetting, but after thinking a moment I realized they only said this because they didn't understand, and they were naturally curious. On the bus ride on the way back to school from the corn maze we had two different centres from different schools on the bus (to save money because the bus was about $500 a trip), the bus stopped to drop off the kids from the first school. There were 3 boys on the seat behind me (from my centre) they were about 7 and 8 years old. They watched as a boy about their age with a shiny bald head got off the bus and walked into his school with the other kids. They snickered and laughed and asked each other "look at that kid! why is that kid bald?" I waited a moment as I listened to them and formulated my response. I turned around in my seat and I interrupted them. They all stopped to listen as I said "Sometimes people get very sick and have to take a medication that makes all their hair fall out." their response was a serious "Oh" and they quieted for a few moments, which was then followed with a subject change.

I think I gave the best response I could for their age, and I'm sure that if they are still curious they can ask a parent or me for more information. I just said what needed to be said, enough for them to understand that it was not a choice the little boy made, and that it's something serious. What I hope they learned from it is that it's not very nice to laugh about that. My intentions were to give the children the simplest version of information they need to interact with a child who has cancer. I would hope that any interaction they have in the future with a child whose hair has fallen out from chemo would not involve laughter because the child is bald. I would hope they would be respectful with their questions and treat the child like any other they might play with.

Another thing I have noticed at my daycare is lots of children like to pretend they are blind. I know this is them exploring their world and learned and assimilating things, but I am very tempted at times to step in and intervene. Mostly I like to take the opportunity to teach them something about blind people. When I see them closing their eyes and shouting to their friends "I'm blind, look at me I'm blind" as they amble around bumping into things I often will take the time to tell them a bit about real blind people. Most importantly I try to normalize it and show them that being blind does not make a person that much different from the rest of us. They can get around on their own, they can read and write, they can do almost anything we can do, even if they have to do it in a different way sometimes.

The CNIB sends Skyler books, I swear we get 2-4 new books a week from them and they are piling up. I can't send them back fast enough, but I do love it because we are exposed to all sorts of new stories we wouldn't have read otherwise. And it means not having to travel to the library, but most importantly it means exposure to Braille. Which I wouldn't be able to find at our local library anyway. They recently sent us a book called Keep Your Ear on the Ball and I must be hormonal or something, but I cried while reading it. It's the first book they've sent that was written specifically about a blind kid. The others have all been just normal books any kid would have, that someone has added Braille pages to. This one was about a new kid at school who is blind. The other kids are so helpful, they want to open his straw, and bring him his lunch and help him walk, but everytime they ask he says "Thanks, but no thanks." and little by little they realize he can do just about everything on his own. Except play kickball. Anyway they find a way for him to play kickball at the end, and he finds a way to accept their help when he needs it. (They give him a whistle so he can signal them to stop talking so he can hear the ball).

I found it to be a very touching book. I really want to read it to my kids at the daycare later, and maybe get a copy for home. I think it might help other kids understand more about Skyler when he does start going to school.

Saturday, October 24, 2009

Moments to Treasure Sometimes Happen in the Middle of the Night

Yesterday we took the kids in daycare on a field trip to a corn maze. It was lots of fun, but it was freezing! We ended up going back to the school 2 hours earlier than we'd planned. I'm getting more and more used to being a daycare "teacher" as they call us. I want to make this post a short one, because it's late at night and Skyler is wide awake, but he is not fussing at all. I will get to that in a minute though, first I want to thank Corrie for the lovely award!

And now for the real reason I wanted to write a post at midnight on a Saturday. Someone decided he is too grown up to sleep tonight, and he went down for a bit at his bedtime but then woke up and decided he wasn't going back to bed. So he is now enjoying his Saturday night, staying up late, snacking on cheerios and watching a movie with daddy. Moments I live for as a mom of a visually impaired baby. My breath is just taken away as I watch him staring so intently at the screen, popping cheerios in his mouth and laughing at the movie, just like a big boy. (It happens to be Tinkerbell he's watching. It's nice and colourful and bright! Perfect for his vision)

Thursday, October 22, 2009

I Like Blind People

About two minutes later....

Sorry. Just had to share that. Anyway, our meal plan has been going well so far. I like having food in the house and a good idea of what we're eating each day. I also packed my lunch for Wednesday (I was working an eight hour day) and it was yummy and delicious! I had a ham sandwich, carrots & cucumbers with dip, and a banana. The kinders had their fun lunch (we make them a hot lunch once a week) and there was extras so I got to have some delicious macaroni and cheese (it was made from actual noodles and shredded mozzarella, not KD) and one of my coworkers brought cookies to share. So it was quite a yummy and filling lunch that day.

We've been going to swimming every Tuesday and Thursday still, and I am still loving it! It's a great time for us to spend together as a family. We all enjoy it, and Skyler is exhausted afterward! Huge bonus. Last night he didn't sleep very well at all. So I am hoping (fingers crossed, knocking on wood) that tonight he will sleep much better since we just got home from swimming.

Also I noticed on Thursday nights, the last few times we have gone that in the change room at the same time as us there are a few special needs kids with a very nice lady who must take care of them. One of these children is a blind boy. He must be about 10 or so, today while we were showering off after swimming the blind boy heard Chuck talking and asked his caregiver who the man he heard was. She said "that's a gentleman who is here with his baby, and his... partner? wife? girlfriend?" I said "wife", and then as we stepped out of the shower I approached the woman. I said "I don't mean to be rude or anything, but he is blind right?" and she confirmed. So I went on to tell her with a smile, that my son is blind as well. And we spoke for a moment. She was very friendly, and told me a little about the boy. He came over from Africa many years ago sent by Red Cross, her mother is his caregiver and he has lived with her since he came here. He woke up on Christmas day when he was younger and realized he was completely blind. He can only see light, on occasion. We spoke briefly about the CNIB and she asked if Skyler's vision was something that surgery could fix. I said no, it's the optic nerves, and she said the boy's condition was static as well since he is lacking his retinas.

It was a pleasant exchange in the locker rooms, and I'm happy that I wasn't too shy to say hello and start up a conversation with them. My favourite part was as we walked away she said to the boy "remember you asked who the man was, and I said he was here with his wife and their baby, well his baby is blind too." and the boy said "Just like me?!" very excitedly, and she said "yes just like you" and he said "That's cool. I like blind people!" haha it was just so cute. Melted my little heart.

Tuesday, October 20, 2009


Wow, so I'm in between my shifts today and napping on my couch. I wake up after about two hours, sobbing. I was sobbing in my sleep and as I woke up. Want to know why? I dreamt I was going to a funeral for a little girl. Maybe about six or eight years old. Her little sister was handicapped in some way that caused her not to be able to walk. And I remember one part of the dream like it was a scene from a movie. Where the little girl who was still alive, sat atop her sister's coffin. After that, there was a part where we lowered her into the ground, the coffin just kept going down and down and down until it disappeared from sight entirely. The hole was neverending. I remember wandering around the funeral asking how she died. It was something to do with her playing a game with her sister and something went wrong.. I don't remember the details.

That my dear friends, was extremely disturbing. I hope that wasn't a premonitory dream. Especially since I work at a daycare. *shudders*.

I hope you all have more pleasant dreams than I do. I'm almost afraid to close my eyes again. I woke up sobbing, I couldn't imagine going through that for real. Especially not with my own child. Horrifying.

Monday, October 19, 2009

Why Am I Awake Again?

It's 4am. Technically I woke up at 3. Although the baby is still sound asleep. I made the mistake of going to bed at 8:30. I admit I was exhausted, but in retrospect, not the best idea. Whenever I go to sleep too early, I have a tendancy to wake up too early and not be able to fall back asleep. My mind was just going too fast, and there were too many not so pleasant things running through my brain so I decided to grab my laptop and retreat into the internet.

The weekend has been good. Chuck and I sat down and came up with a 2 week meal plan on Saturday. Since over the last few weeks we have eaten sporadically and mostly junk food/fast food. Which is soo not healthy. I decided I was tired of it and I started making a meal plan like our daycare does for snack. Except I couldn't figure out how to use Excel properly so I just downloaded a template online, and when Chuck woke up I showed him and he was like "no no no.. let me make one for you" cause he's a whiz at Excel. Anyway it turned out beautifully (way better than the template I had) and he started to really get into the planning thing and we came up with a lovely menu for ourselves. A lot of healthy things, and everything on it is perfect for Skyler as well.

So after making our menu we went grocery shopping and bought enough food for basically the entire month and we set to work. Yesterday was waffles (homemade with the waffle iron & batter made from scratch) with fresh raspberries and whipped cream. So tasty. We had scheduled it as brunch because on Sundays we tend to sleep in a bit. So after our brunch we went to the Y to go swimming/have a playdate with a friend and her baby. Skyler loved it of course and took a 3 hour nap after while Chuck and I made dinner. We made a roast, with carrots, onions, mashed potatoes and gravy, with dinner rolls. It was so delicious. When Sky woke up he had some mashed potatoes which he loved eating and playing with. I gave him a bowl full just so he could mush them around with his fingers.

Then we watched a bit of tv and I went to bed super early. Which pretty much leads me to right now. Quite boring when I see it all typed out like that. Haha. Oh except today is the 19th, and that means it is exactly one month until my little monster turns a whole year old! Insanity I tell you. Where did my itty bitty baby go? He is already walking around the house, oh and he has a new word, "Nee". It's cute sometimes it sounds like he is saying "I need you" when he is lying in his crib. He is pulling himself up all over the place now, and he is trying his hardest to crawl. He is getting there too. I am exhilerated/terrified! How quickly it goes by.

In terms of seizures, I haven't noticed anything that would lead me to believe his little excitement flails are anything serious. He still is only doing them one at a time, and only when he is excited it seems. Obviously we will continue to monitor it, and as his neuro said, if it's infantile spasms they will get progressively worse over two weeks. I imagine we will notice that and take immediate action if that happens. Gotta love having a child with special needs. I suppose this will make me very well prepared for the next child, typical or not. At least I will know what signs I am looking for if anything ever does happen. (At least in terms of SOD & seizures)

Oh and while we were at the Y we signed Skyler up for the waiting list on the Lil' Dippers class. It's a swim class for babies - 5 year olds, where you get them used to the water, and they sing songs and play games and show you how to teach your child different techniques in the water. It should be lots of fun. I think Chuck would probably even come with us. We signed up for the day that has the shortest waiting list, Wednesday at 11:15am. There are twelve people before us. The other days had like 25 people so hopefully this won't take years to get into or something.. Either way we are going to continue taking him swimming on Tuesday and Thursday nights.

He is just too cute.

Friday, October 16, 2009

Neuro - Seizures

Okay so the appointment went well. Each time I see Skyler's neurologist I realize how much I like him. He was happy we called and that we pay such close attention to Skyler, he said they waited a week on purpose to see if the actions increased (which they didn't, they actually decreased, he hasn't done it even once today) the doctor said with Infantile Spasms they always get much worse over a week to two week period. He reviewed the video I took of Skyler and said that it was definitely not a seizure. But as we were sitting there Skyler did the thing he does when he gets excited he flailed his arms. The doctor said that that movement looked like what happens during a seizure, except for the fact that it was isolated, and he had a look of excitement (not common with seizures, the child is usually in pain). He said to monitor it, and he would put Skyler on the waiting list for an EEG (which is 2-3 months) and that if by that time we didn't think it necessary I'm to call and cancel it. If he has the same movements in clusters and it begins increasing he wants us to call and they will bump someone else to get him seen immediately.

His neuro is a great, caring doctor who takes us very seriously and commends our parenting skills and the fact that we are very attentive and attuned to our son and his needs. I felt good leaving the appointment even though his flailing thing looked kind of like a seizure. I honestly think it is just what he does when he is excited. He has always done it, and never in clusters, and it's just his arms, normally the legs would contract too. Anyway I am glad that if it is a seizure we will find out, and have him seen right away.

Aside from that, it's been a long and not very good day. Work was alright, the kinders were well behaved, as well behaved as children can be of course. But the rest of it.. Eh I can't wait for this day to be over.

My Dear Daughter

Dear Sophie,

Yesterday was Pregnancy and Infant Loss Awareness Day, and I feel like I should have written something about you, but the truth is I think of you everyday. Every time I see the picture of your flowers that hangs above our bed. Every time I look at your little brother's toes. I think about you every day when I log onto my computer and write a post in my blog. You were the reason I started writing this. I'm sorry it's turned into so much about your brother. I wish you could be here too. I wish he could get to know you, and you could teach him all sorts of naughty things the way big sisters do.

I know that you know I miss you, and will always love you. And some days I see children who are two and I wonder what you would be doing now. Sometimes I wonder what life would be like if I hadn't lost you. Completely different I'm sure. Perhaps I would still believe in the fairytale pregnancy where nothing goes wrong ever, and everyone has a perfect little baby when their nine months are up. Perhaps I'd have a different job, maybe your dad and I would be trying for our second right about now. I just don't know. It's probably pointless to speculate, but I suppose it's how I deal with losing you. By remembering that my life just wouldn't be the same. That there was some twist of fate at some point. We were going to have our first baby, and then suddenly we weren't.

Sophie I know you will always be an important part of my life, and your daddy's and your brother's too. We love you and we miss you, and in my mind every day is Pregnancy & Infant Loss Remembrance day.

Thursday, October 15, 2009


Took him swimming again tonight. It was great, Chuck and I both went in the water with him and we played. He was a bit sleepy this time so he snuggled us a lot in the water, but just enjoyed the waves, and I helped him "swim" a bit and he laughed and had a good time. Again once we were done, he was ready to pass out in our arms as we changed him. I really like our Y, there are two pools (the main tank, and the family pool) and a hot tub and steam room. They have men, women, and family change rooms. And they just renovated the whole place this year, so the change rooms are spacious and there are huge individual change rooms within the family change room with benches. It makes it so easy to get changed and ready to swim.

Today was a pretty long day for our family. Chuck got asked to sub at another centre run by the Y, so he was there from 11 until 6, while I watched Skyler until 3 and then went to work for my normal shift at my school. We had a few incidents today. One of our grade fours is having a bit of an aggression problem. Obviously I am not going to go into details because of confidentiality, but he's not special needs, I think it's more a matter of never being told the word "no" and so when he is told no at our centre he has a habit of throwing things and getting very upset. Today he purposely hurt another child. It was not good. We also had another incident with a couple grade two boys fighting. We dealt with it all, told them violence is not acceptable, or tolerated in our centre. And the parents were spoken with. Hopefully it doesn't happen again.

Tomorrow is going to be even more hectic. I work 7-9 and then at 10:45 Skyler has his neuro appointment, then I'm back to work from 12 until 6. Chuck has an interview at 4, for a job with an alarm company, which is for overnights. Which he is excited about because it will mean he can continue working at our centre. The kids love him and he loves playing with them too. He's always out in the field playing soccer or tug of war or whatever the kids want to do. The centre he was at today actually offered him a full time position but he had to decline because he has a job interview tomorrow and the hours might not work out for taking care of Skyler. We could probably make it work if we need to though, so it's nice to have the option if the interview tomorrow doesn't pan out.

I'll update you tomorrow about his neuro appointment, but it will have to wait until I'm done work so it may not be until 6 or 7. Hope you all are well!

Wednesday, October 14, 2009

Swimming = Sleeping??

So I think we will definitely be making swim time a routine. Last night my little baby, slept an entire ten hours straight, completely uninterrupted! For the first time ever! He did not wake even once. Which means I slept through the night as well. Apparently swimming is at the perfect time, and just the right thing to tire him out and help him sleep. Anyway I just had to share that little triumph with you all. Hope you are well as well!

Tuesday, October 13, 2009

It's Fun to Play at the Y M C A

Thank you, he is adorable :D haha. I finally took him to the gym to go swimming tonight. It was lots of fun! We swam from 7 until 7:30 (which is perfect because his bedtime is 8) and he laughed and giggled and smiled and kicked and had a great time in the water. As soon as we got him out of the water he fussed until he was dried, dressed and in his car seat. He just crashed, the second I put him in it. We transfered him from car seat to crib as soon as we got home and he hasn't made a peep. Which is fantastic! I really enjoyed myself, I think we're going to go on Thursday too. And I'm considering taking an aquafit class for me. It's Tuesdays & Thursdays too, right after Skyler's swim time.

And yes I think the glasses are helping his strabismus too! He is getting better at reaching for things when he wears them. I think he has better depth perception because he is using both eyes instead of just one. Plus they are so cute on him of course. He is the cutest baby. In my eyes at least. And while he has stopped doing the head shaking thing he is back to his old chewing nothing thing. He occasionally starts chewing even though his mouth is empty. I think I read somewhere that that could also be a seizure. /Sigh. Here's hoping we just make it to Friday heh.

I've had my own issues too, over the last few days my wrist has started doing that thing again where it's locked up inside. I don't know what exactly is wrong with it, but it feels like the bones are locking together, if I bend it or put any weight on it the pain is excrutiating. My old boss (the chiropractor) used to just take my hand and flick the wrist back into place or something, but he is in Toronto now, so I am debating what to do with it. Live with the pain? Physio? Wrist brace? Cortisone shots? Mind you I have had physio for my wrists before, and braces too. I used to have carpal tunnel pretty bad in both wrists and physio helped a lot, but this pain feels different. Way more hurty heh heh. Anyway, I hope you all are in better shape than I am. (i.e. not falling apart haha)

I'm Thankful For My Family

Thanksgiving was good, my mom asked me to bring dessert, and I'm not much of a traditional thanksgiving food kind of girl, I don't much care for turkey and pumpkin pie is low on the list of things I enjoy eating so I spent a good amount of time coming up with something original for our dessert. I ended up creating something all on my own. First I made a giant chocolate chip cookie in the bottom of a cake pan. Then I let that cool while I made home made caramel. Once that finished I poured it on top of the cookie. Then I mixed together two packages of cream cheese with 3/4 cup of sugar and a cup of cool whip, I poured that in as my next layer once the caramel had cooled. Then Chuck grated pure milk chocolate shavings on top, followed by a melted chocolate drizzle. The end result was fantastic, and I think it goes without saying that we were lucky no one was diabetic.

We had dinner at my moms, some of my family was there, a couple of my mom's friends. It was good. The food was great, lots of laughs were had. I think my mom was very happy we came. I felt wanted, which is always a good feeling. And everyone loved dessert the best, so I think I'll be making that again soon. Especially since it only cost me 10 bucks to make. Not bad since it fed 12 people and I had some left over. (Plus we cut it into huge pieces). Skyler was pretty well behaved as usual. He hasn't had much in the way of seizures or whatever they are. Hopefully we can go until Friday without having to take him to the ER.

I'm really really hoping to take Skyler to the gym today. There's a preschool (0-5) free play swim time from 11:15am until 1pm, but he's napping now and I think he's going to sleep through it, which is okay because there's one from 7-7:30pm which would be perfect cause we'll just have finished work at 6. There's also a big play structure at the Y for him to play on, now that he's learning to pull himself up and walk it's all he wants to do. I think it will be fun to get him involved in swimming when he's young. They also have lots of other programs I can take him to which I am looking forward to.

Speaking of the walking thing, he now does not like his exersaucer. He realizes that he can stand in it, but he's not going anywhere and that is just unacceptable. Yesterday I was holding his hands and he led me on a walk through the entire apartment twice, and as soon as I tried to pick him up he threw a fit. I put him back down and let him walk again and he was fine, try to pick him up again a few minutes later and he threw another fit. Here we go now. Hard to explain to an almost one year old that we can't always get whatever we want, but I just tell him exactly that in a calm voice. I let him scream at me and I assure him that it's okay to be upset, but he still can't get what he wants all the time. He will eventually understand even if he doesn't yet.

Here's a picture of Skyler at his grama's house on Thanksgiving.

Saturday, October 10, 2009

Baby On The Go

Still in the clear on the head shaking front which is good. I'm having an easier time keeping the panic at bay knowing that he is only doing it about 3 times a day now and nowhere near as severe. Some days I honestly do wonder though what it's like to have a baby without special needs. Do other parents worry this much? Probably at times I bet. I just don't know. Hard for me to tell since I've never had a typical one. I get the feeling though that if I do have a typical baby I will always feel like I'm forgetting something. You know that feeling you get when you're in bed and the baby is sound asleep and you wake up suddenly, freaking out because you think you forgot to give him his last dose of prednisone? I imagine it will be like that except when I wake up freaking out about not giving the typical baby their drugs I will realize they don't need drugs and I'll have to try to fall back asleep. I mean I have been off birth control for 7 or 8 years and I still sometimes have that feeling that I've forgotten to take my pill, or that it's time to take it. I'm strange I know.

On the movement front Skyler is in full mobility mode. He refuses now to stay stationary for any period of time. And he is figuring out this whole crawling thing too. He now will go from sitting to being on his stomach with his bum in the air. He still has this whole problem of leaving his face on the carpet though. Haha. So he is moving his body, but his face is in the carpet. Poor kid is going to get rug burn on his nose if he doesn't figure out how to lift his torso up or at least his head very soon. I mean he will lift his torso and his head while lying still, but hasn't figured out how to do the leg part at the same time. Last night he was sitting on my lap facing me and my arms were down at my sides. He put his hands on my shoulders and pulled himself to standing without a moment's hesitation or a faltering movement. It was just wham hey mom now I'm standing. And I'm sitting there looking at him like O.o I feel like my baby knows magic tricks or something.

I want to thank everyone for all the wonderful comments. Especially on the posts about seizures. It makes a world of difference to me that you all comment and reassure me, and have such great suggestions or advice. Thank you.

In other news, Chuck came to work with me yesterday, and has an admirer. Haha. One of our grade one girls was cold when we took them outside (because it snowed!! We had a blizzard yesterday, it's only October 10th. Sigh) so she put her hands in his jacket pocket and he warmed them with his hand. When one of the other teachers offered to take her inside because she was freezing she smiled shyly and giggled saying she would rather stay outside with Chuck. It was so cute. We did bring them in about 5 minutes later though so don't worry she didn't get hypothermia or anything.

I'm finding myself way more in charge than ever before. I've started to realize that we have about 55 kids in my room, and the other staff aren't very good at getting their attention or getting them to do what they need to do. So I've started stepping up to the plate. And they're actually responding to me quite well. I swear I get a rush everytime I manage to get everyone listening and doing what they are supposed to be doing. It's an amazing thing to have the attention of 55 kids between 6 and 9 all at once. I even had them clean up their mess properly yesterday before they could go outside. It's been chaos before, they would leave toys everywhere because "I didn't play with it so I don't have to clean it up!" well that excuse doesn't fly with me anymore. I make everyone tidy up everything together. We all need to help each other.

It's 7 am and I'm tired, Skyler has gotten very used to being up this early so he is of course awake now, and I want to sleep because it's Saturday on a long weekend. By the way happy Thanksgiving to my fellow Canucks. I can't believe we have snow for thanksgiving this year, normally we don't get snow until Hallowe'en. Wow I am all over the place. Clearly it's time to try and put the kid back to bed. I'll hopefully post some thanksgiving pics after the weekend's over. Take care everyone.

Thursday, October 8, 2009

I Just Go On & On & On

I may have mentioned at some point before that I have Panic Disorder. I have had it almost as long as I can remember, in fact I think I was 8 when it developed. I had begun to ponder the meaning of life in my own little way. My grandma had taken me to Sunday school at the chapel by her house and I had recieved a very incomplete and random catholic education, okay well rather it was not an education but more of a few teachings. Someone had bought me a kid's bible as well and I was a huge reader (even at that age, I was reading full novels, my teachers made me go to the resource room at school and read Little House on the Prairie when I was 6 or 7) and I used to read the stories in that bible.

Except, I suppose the problem was that it was the old testament or something. But at the time, I had no idea there were different testaments or what a testament was. Basically I was taught, the bible is the bible, every word is true. Accept it, pray to God every night and beg for his forgiveness for being alive and hope that he decides not to send you to hell. That was the kind of "religious education" I recieved. So I believed that the bible times existed somewhere in some sort of space-time dimension of its own because I couldn't figure out how the dinosaurs fit into the whole equation. I reasoned to myself that if on the first day God made Earth, etc etc and then he made Adam, well when did he make the dinosaurs? Where were they? I couldn't figure it out. So in my mind they all just existed in separate realities/dimensions.

Anyway one of the stories I read was about Isaac (I think that's his name) the one who was told to tie up his son, take him to some big rock and kill him to prove that he loved God. Well at that point in my life it didn't raise the same red flags that it does now. What that story did was confuse the heck out of me. I'm not trying to bash anyone's religion at all. I know now that people believe different things about the bible. But that story (to me) was terrifying. I spent every night praying to God to please please not make my parents kill me or send me to hell. I know in the story he didn't end up killing the kid, but honestly if anyone asked me to tie up my kid and kill him to prove my love, well that's not someone I want to put my faith into. That would make me run the other way.

So at night I would begin to panic, I would lie in bed, staring at the walls too afraid to sleep. Too afraid that what if heaven didn't really exist, what if after life there was nothing. Just blackness. No thought, no love, no feeling, nothing at all. And I would hyperventilate, I would sweat, my stomach would tie itself in knots, my heart would beat so fast, I felt like I was going to die. I diagnosed myself by the time I was 10. My mom had taken a psychology class in university and her textbooks were one of my favourite reading materials. I learned about psychosomatic symptoms, I learned about anxiety disorder, panic attacks, manic depression, so on and so forth. I discovered that what was wrong with me was a panic attack, that I wasn't dying.

They would come to be frequently at school, I was shy and nervous, I hated talking in front of people. It didn't matter who, teachers, classmates, anybody. If I had to stand up and talk in front of anyone I would have a panic attack. If I hadn't finished my homework and I was worried the teacher would ask me something about it I would have a panic attack. Sometimes I had them randomly for seemingly no reason at all. The only good thing about it was that at least I realized that I wasn't dying and that it would eventually pass. One of the worst parts about having a panic attack is when you freak out that you are having a panic attack, or when you don't know it's a panic attack and you freak out because you think you are going to die.Hypochondriasis was another condition I struggled with for a while. My chest would sometimes hurt from the panic attacks, which I thought was an indicator of a heart attack, which it can be. But probably in my case the chest pain was due to the palpitations and all the epinephrine rushing through my veins. You have to understand I was still a child when all of this happened. I suppose you could say I matured a bit quickly. These were the things I worried about as a kid. Death, the afterlife, heart attacks, brain tumors, etc. I was aware I wasn't normal. The teachers wanted me to skip a grade because I was at a higher reading, higher comprehension level, and everything else than the grade I was in. My parents let me decide and I said no, because the older kids picked on me.

When I was about 14 I learned that I could somewhat control the attacks, I had the power to on occasion calm myself down. By university I decided to step out of my shell of shyness. I walked up to people, I introduced myself. Of course my blood pressure and heart rate were through the roof, but I managed to do it nonetheless. And I found I got a huge rush from meeting new people, from being outgoing. It was something I had never done before. Normally I was the one in the corner, hardly making eye contact, afraid someone would look at me. Slowly I've come out of my shell. I no longer panic when I have to talk to people, (except sometimes on the phone if I know I have to deliver some bad news, or if it's something scary like health problem related) I can stand in front of my entire daycare with 75 kids and talk to them without hyperventilating.

But over the last few days I've been having them again. And it's been bad. My worst trigger of all has always been the hospital. It's sometimes called white coat anxiety. Just seeing a doctor would make my blood pressure rise, for the longest time none of my doctors could ever get an accurate reading of my blood pressure or heart rate. One time I was admitted to the hospital and the nurse who was taking my blood pressure and heartrate was speechless. He said to me "I am not even going to write this number down, this is insane." I was basically in tachychardia almost. Though I had told them I had panic attacks so they knew what it was from.

This whole business with the seizures is killing me. I talked to the nurse on the phone today, his appointment is for next Friday at 10:45. It's perfect timing. But she asked me how often he has these spasms or whatever they are. I told her on Saturday I did a running count for the day and it was 20. She said that was too high. She said if he did that again to take him straight to the ER and tell the doctors about what's been going on, and the neurology appointment. She said that from what I've described she isn't 100% it's a seizure, but if it is that it needs to be taken care of right away. Luckily today he has only had THREE, and they were very small. It was half a second and he barely moved his head. Nothing like the video I posted. So we're in the clear for today..

Anyway I started out attempting to tell you about my recent panic attacks, but ended up giving you my life story. Oops. So to make up for that, have some adorableness.

Wednesday, October 7, 2009

Flash Skyler

It's take your husband to work day! Also known as my centre is short staffed. Chuck's mom used to run a daycare in her home for basically all of his childhood, and he has his classification as a childcare worker, and he used to work one on one with special needs kids (ones who had behavioural problems) plus he wasn't doing anything so I recruited him to come to work with me. My supervisor was awesome about it as she is with most things and said she'd bring him an employment package tomorrow to make sure he gets paid. She ended up calling me into work at 1, (I normally start my afternoon shift at 3, and chuck was going to start at 3) so I went in, Chuck brought me and he had the baby of course because bestfriend/babysitter doesn't get off her work until 3. So he got a Y shirt and talked to supervisor for a bit. Supervisor had been called to a meeting and needed me to take her place for the afternoon. Turned out she wasn't able to get back to the centre so I ended up taking her place in the kinders room all afternoon while Chuck took my place in the big room with the 1-3s.

It's funny because he used to work with one of the girls who I work with now, so I imagine he was able to acclimate quickly with the staff. And he tells me the older boys actually behaved for him. Apparently all he had to do was give them "the look" and they stopped what they were doing. Haha, I think it's funny because there hasn't been a guy working in the daycare like ever. He also had one of the girls hanging off him the entire time. I laughed, I have several of the girls hanging off me at any one point in time. Sometimes the boys too. All in all I think it went well. He's great with kids too, so that is always awesome.

As for my little monster OMG is all I have to say. This morning we were settling in, about to put him down for a nap, I was in my PJs snacking on the brownies I made last night, when the phone rang. Except it wasn't a call. It was the buzzer. The appointment with his CNIB OT that Chuck told me was scheduled for tomorrow was actually today. UH OH! Haha, so I quickly tidied up and changed my clothes before she got to the apartment door. We had a good visit, Skyler is doing so much more than last time she saw him. I showed her how he takes steps now. Except I have been helping him by lifting one arm a little to prompt him to take a step. Anyway she was impressed and wrote up a good report for him (she always does).

Now for the OMG part. I got home from work and picked up my baby, I had him on my lap facing me, hugging him, and he started climbing me! I put him down on the floor and held his hands and he was gone, like walking away from me. Walking all over the place, walking fast! Walking without me prompting him in the slightest. It's scary!! On the one hand I am like omgomgomg walk walk walk baby! Go baby go! On the other hand, no no no no you are my tiny little baby! No walking! Stay here with mommy! Ahh. I am so delighted with his mobility. It's mindblowing. I put him down in his crib half an hour ago, he had his head up in the left half of the crib, bum in the right half, he was on his back. I can hear him babbling and then eventually crying on the monitor. So I go in and he is up in the very right hand corner of the crib on his stomach, head on the right, bum on the left. Like what happened to my little baby who doesn't go anywhere?? I'm so excited and freaked out. It's just awesome/scary.

Oh and along the lines of scary. I called the Neuro's office today, and spoke to the nurse, I described to her what he does and she asked me if I could take a video of it. I said I already had. She said it didn't sound like Infantile Spasms, she said she wasn't sure what it was and she would have to talk to the neurologist and call me back. I waited for her to call me back, but hours passed by and nothing, so I went to work and my phone was on silent. When I got out of work I checked my voice mail. She had left me a message saying they were going to schedule him for an appointment next week and she wanted me to call back and schedule it right away. She also went on to say that if it becomes more frequent or intense to take him to the ER immediately.. She didn't say why, and I called back but the office was closed. I left a message saying I needed to book his appointment and to call me back tomorrow.. But now I am stressing about this. I want to, no I need to know why I should take him to the ER. Clearly they are worried that this is serious. So now I am too.

Tuesday, October 6, 2009

Faeries Get Their Wings

Okay apparently I am having the urge to post every day now or something. But seriously, my baby is too cute to keep him all to myself, and he has been so much fun the last couple days. Aside from the whole bedtime & non sleeping thing of course. He has been having too much fun walking holding my hands. We walked all around the apartment this morning and he played with his crib from the other side for the first time, and then we walked into the kitchen and he sat down because "Oh wow! What is this feeling on my feet?" he had never been on the kitchen tile before! I forget how new he is to the world sometimes. The kitchen floor is extremely unexciting to me, but when we stepped onto it, I saw his face I could just tell he was intrigued by the new feeling. So he slowly lowered himself to the ground so he could sit on it and feel it with his hands. I decided to step over him, so I walked over him over and over and he thought it was hysterical. He was just laughing his little baby butt off. And he does this thing where when he laughs he laughs so loud and so long that he stops making sound, and then he growls. It's so funny to watch and listen to!!

Oh and as I mentioned yesterday for those of you who missed it. My friend just started her own blog and is starting down the road to becoming a mommy. So if you have the time to stop by her blog I'm sure she'll appreciate it. :D

Without further ado, the reason I wake up every morning with a smile on my face:How cute are my boys? Seriously.

Monday, October 5, 2009

Life's a Gas

Ever have those days when everyone wants money that you just don't have, and your baby absolutely refuses to sleep more than oh an hour at a time, and you can't pay the car insurance because you're the only one bringing in an income and you're only working part time, and your already-has-enough-issues-baby is having what are likely seizures about 25 times a day, oh and has also caught the same cold as you? No? Okay maybe that's just me.

But really I shouldn't complain, look at everything I do have:

-a wonderful online network of support. (That's you!)
-fantastic friends who are willing to bail me out and help in whatever way they can even without me asking.
-a beautiful amazing baby who only needs smile or laugh to bring the light back into my life.
-a loving, caring husband who stays up with the baby when he won't sleep all night, and cooks me dinner, and does the housework (mostly) without complaining.
-a job that I really do enjoy.
-free membership to the gym which I swear I will eventually use..
-not to mention all the creature comforts, and necessities of life that I have.

Some people have it much worse I know. So while I complain about some things, I am also most grateful for other things.

Anyway in other news, my best friend is embarking upon a exhilerating and terrifying journey of her own right now, as she tries to become a mother on her own! If you have the time, please stop by her blog and give her some words of encouragement. She can use it!

Now, as a reward for listening to me whine, I give you the cutest baby ever (who has two of those stacking ring toys).

Sunday, October 4, 2009

First Steps

He did it! He took his first steps while holding my hands. He's been standing quite well (as long as he has something to hold onto for balance) for 2 months now, but he normally just stands, any effort to get him to move anywhere is met with much resistance. Until today that is. We were playing on the floor, and I did some tummy time with him (he's still trying to figure out the whole crawling thing. He sort of flails every limb randomly) and he started to get annoyed with that so I rolled him onto his back and held out my thumbs for him. He pulled himself up to sitting, then standing, and then !!! he took 3 steps towards me! I freaked out and started praising him frantically in a falsetto voice. He did it again several times, probably feeding off the positive feedback from mommy. To which I responded by picking him up and snuggling him and covering him in kisses. Then I laid him down to change his diaper, which normally is something he just lays there for, but not today. He rolled over three times during the course of his diaper change. Stationary baby no more.

So it begins..

Friday, October 2, 2009

Head Shaking

Okay, so if you read the post beneath this, I finally managed to take a video of what he does, I intend to show this to his neuro to help the diagnosing process. But I thought I might as well get everyone else's take on it. Especially anyone who's seen a seizure that looks like this before.


There's always something isn't there? You think you're okay, and then something pops up. I'm sick, I have this stupid cold and I feel like hell because of it, but really I can deal. That's not that bad. Then Chuck says to me this morning that he thinks our son may be having seizures. It's not out of the realm of possibility. If his ACTH levels are low that's what happens. But he's been on stress pred for a long time, so it isn't like he's been low on his cortisol replacement therapy. Of course we're not certain that what we're seeing is an infantile spasm (baby form of seizure). For the past month he's been randomly shaking his head like he is saying "no" which we thought was cute. And he does it when he doesn't want his soother, like if he's lying down on his back and you put the soother in his mouth and he's crying and upset and doesn't want his soother he will shake his head (in the same way we shake our heads no) to get the soother out.

But he also does this head shaking thing randomly, like while he is drinking milk and while he is just sitting there. I know head shaking is also a sign of an ear infection in babies, but he doesn't have any of the other symptoms and last time we had the ped check his ears they were fine (and he had been doing the head shaking thing before). So now I'm concerned. We're setting up another appointment with the NP, and the neurologist to check it out. Seizures are a known symptom of Septo Optic Dysplasia, but I had really hoped we wouldn't have to deal with them.

I'm feeling somewhat overwhelmed, if it is seizures what am I going to do?? I mean yes I know logically what I will do. I will research every possible thing I need to know about them, choose the best treatment option out of what's presented to us by his team of specialists (the treatment is actually prednisone, so I'm guessing they will up the dosage) and monitor the situation blah blah blah etc. But I am wondering when will he get a break? When will we get a break? We had gotten so used to all his current issues and taking care of everything and being comfortable with it. I'm just not ready to add seizures to that list. Plus seizures generally mean a lower intellectual capacity. Not that I am saying I will love him any less if he is mentally/developmentally disabled. I will always love him just the same, he is perfect, he is my baby, but what about when he goes to school? What about when kids start calling him a "retard"?? I don't want that for my baby. I don't want that for anyone's baby. I wish people would stop using that word.

All I can do is hope it's just him being him and not a sign of a bigger problem, and know that even if it is, we'll deal.

This just sucks.