Monday, August 31, 2009

Absolute Nightmare

We just got back from a 2 hour long appointment with the audiologist to check Skyler's hearing. It was a test I didn't think we needed in the first place. His hearing was checked in the NICU and he passed, after we got him home we were told we had to go to an OT because he was premature. Fine, no problem. So we took him to the OT, his tone and everything was all well and good, well she tried calling his name a few times and he didn't look at her. So she went off and told the audiology department, hey this kid is blind and didn't pay attention to me. I tried to tell her hey my kid can hear just fine, he responds to us all the time at home. But I suppose in her 5 minute evaluation she learned more than I'll ever know about my own child's hearing right?

So the audiologist called and scheduled an appointment for him, and I asked her why it was necessary and she mentioned the OT and said that since he's blind we want to make sure his hearing is okay. Right and he was blind from birth and you tested him then and it was fine. So why would it have changed? Anyways we took him to that appointment today and it was TWO hours of uninterrupted hell. My head is pounding so bad. He was supposed to be asleep for the test, so it was close to his naptime. But they had to glue a bunch of sensors to his head and jam in some earphones. You really think my baby is going to sleep with all this shit on his head? Not bloody likely. So instead of a sleeping baby we got a screaming crying, so mad he can't breathe baby for TWO hours. They kept trying. Eventually they gave up without finishing his left ear and want us to come back for a different kind of appointment in October.

It was hell. He was screaming we were trying to comfort him, he was trying to get the sensors off his head, and the earplugs kept falling out and they kept having to jam them back in. He got so upset he started sweating and the electrodes started falling off. So they were holding them on and taping them back on. It was hell! And I know for a fact my baby doesn't have hearing loss. He can hear me just fine, even if I am whispering. Also Septo-Optic Dysplasia is not linked to hearing loss so I have no idea why they are insisting we test his hearing. Oh and get this she said if he passed they'd be willing to let us go for a year before the next appt. So even if my baby's hearing is fine we have to go back and do this all again in a year?? I don't get it.

Now we have one very very exhausted baby who is too wound up to sleep. And I just know this is messing up his sleep schedule, so sleeping tonight should be fun. Especially since I have training all day tomorrow and have to be up bright and early. Can't wait...

Sunday, August 30, 2009

I Love Braille

I've discovered I can actually read grade 1 Braille with my fingers now! It's kind of fun watching tv and reading at the same time. I'm very excited about teaching it to Skyler. He'll have to learn Braille differently than sighted people learn the alphabet, but I am sure I will get the training required before we come to that. Today we stopped by the store and all the back to school stuff is on sale, and me being me.. I had to get some construction paper and glue and other such craft things. (I also got some gorgeous blue yarn for very cheap, but that wasn't in the school supply section). We got home and I took a few minutes trying to think of my next craft idea. It struck me very suddenly and here's what I came up with:
Yay for construction paper and glue! You can't tell in the picture but I made each card huge, and they're all bright colours so he should have no trouble seeing them. We're going to put them up on the wall along with the English alphabet letters above each card. I know he's young, but it's never too early to encourage literacy.

Friday, August 28, 2009

Neuro update

So happy this morning is over. The appointment went better than expected. We had to wait longer than we expected too, and that sucks, and I was slightly late.. but my supervisor seemed to be understanding. The wait for the appointment turned out to be okay though. The doctor was extremely thorough, as he mentioned a few times that he had obtained all of Sky's files and looked over them before the appointment, and he had things ready to explain to us. But as we talked he found out that we already knew everything there was to know about our son. He kept saying how impressed he was with our knowledge and how on top of everything we were.

Skyler appears to be developing very well, at and above where he needs to be in most areas. He was very impressed with him, and with his ability to babble, and sit up and everything that he does. He said sometimes babies with the septo-optic dysplasia have problems with mental development (which we already knew) but him babbling and doing everything he should be on time, the neuro was not concerned. He said we have the option to get an MRI done to see where everything is at, in a year or so. But he isn't concerned about it, and said it was totally up to us. He said we could see him in one year, but then followed that by saying that we are so together with everything that we could certainly wait two years before going back, and we'd be able to find out much more by then. We chose that option.

My first little meeting at work went well, and I'm excited to get started. It's a school centre, so the youngest kids are kinders (4 or 5 years old). I'm working with the grade 1-3s I think.. Anyway it shall be interesting. I hope you all are well. Please leave a comment and let me know how you're doing!

Tuesday, August 25, 2009


Neurology finally called yesterday. They want us to go this Friday at 8:45. The only problem with that is that Friday is my first day at work and I start 10 am, and the appointment supposedly takes an hour. Apparently it's the first appointment of the day so the doctor shouldn't be late, but if he is I might be late for my first day at work. I didn't realize the scheduling conflict until after I got off the phone with them. I called them back and they said they don't have a lot of options for new patients so it's a take it or leave it until many months later kind of thing. This is one of the appointments I really want to be there for. He has like 4 appointments in the first week of September. Appointments that I had to reschedule several times already and am still going to miss because I start training at work and can't miss it.

Monday Aug 31st is his hearing test (something I'm not entirely convinced he needs.) Sept 1st is endocrinology. Sept. 4th is the newborn follow up clinic and his monthly with the NP. And now he has neurology this Friday. Sept 24th is his opthamology appointment. That one I am excited for, I can't wait to find out a bit more about his useable vision. His CNIB OT came yesterday and I'll tell you more about that in a minute. I'm not quite done with the whole neurology thing yet.

Honestly I am kind of afraid of the Neurology one. First of all I have no clue what they will be doing or how they plan to find what they will be looking for. I'm 99% sure it has to do with the septo-optic dysplasia or de Morsier's syndrome. In kids with de Morsier's often the corpus callosum or septum pellucidum is missing. Which can mean learning disabilities or developmental delays (and also the dreaded R word). I imagine that is what they will try to determine, but I don't know how exactly they go about this, since no MRI has been scheduled that I know of. I'm guessing maybe they look at him and then decide if he needs the MRI? I don't know. Now I have two things to be extremely nervous about on Friday, Neurology and a new job (and possibly being late for said new job). Aren't I a lucky girl?

Back to something less panic inducing. Skyler had his visit with his CNIB vision specialist yesterday who I love love love. She brought us so much Braille stuff! Chuck spoke to her at the picnic and mentioned that I was learning Braille on my own so when she came over yesterday she had 3 bags of stuff for us. Including a parents kit about Braille, a box of alphabet fridge magnets with Braille on them, and two lovely brand new board books with Braille for us to keep. One of them is the Dr. Seuss book Mr Brown Can Moo, Can You? And we filled out a form for Seedlings where they send you another free Braille book in the mail. I can't wait for them to arrive.

Unfortunately someone could not be convinced to take his usual nap before she got here, so he was rather tired and somewhat cranky for the visit. But he did really well all the same, and he still smiled a lot for her. We all noticed a huge improvement in his tracking skills. He wasn't hesitating to follow the objects from one side to the other and back and up and down. His up wasn't perfect but she said it was really good and that tracking up is the hardest so he did really well. He's focusing nicely and she checked all his ranges of motion with everything and his tummy time and said that he's going to do great at the developmental clinic. (Chuck will be taking him and meeting the CNIB OT there, I have to miss it.)

I can't wait for September to just come and go honestly. There are just too many appointments and too many new things to adjust to, Chuck and I are both going back to work, and we'll have to balance his meds & appointments and figure out our schedules and make new routines. I just want that to be done with already. I'd love to fast forward. We also have to take him for blood work today, which we just keep putting off, and really it's Chuck that doesn't want to go. I think he is worried about Skyler having his blood taken. He was perfect last time, but I think this time he is much more aware of what's going on and wants to move around a lot so I'm not sure he will behave as well as last time.

I plan on writing a post about labels as soon as I get a moment to sit down and collect my thoughts. So hopefully that is coming soon. And here is hoping that the neurology appointment & me starting work both go well on Friday.

Monday, August 24, 2009

Too Cute

"Look at me mom I can stand!"
Skyler meeting a goat for the first time, at the CNIB picnic.
Looking concerned at the picnic. No idea why.
My basket has something way cuter than laundry in it.

Sunday, August 23, 2009

We're All Just Waiting

We just got back from the CNIB picnic! It was lovely. The weather (for a change) was perfect. There was a petting zoo and tons of animals (it was on a farm/corral place) there was food, and hayrides and many many families with children who had vision problems. There were crafts for the kids, and all sorts of fun things to do. The ground was a bit wet, but that was alright.

When we first got there I was so intrigued watching the blind and low vision children and how they made their way around the world. It was pretty awesome to see that most of them were able to walk around just fine without any help. None of them had canes. They'd bump into things here and there, but otherwise you could hardly tell which ones were blind/low vision. We even watched some of them wondering is that the blind one or is it the sibling because it was so hard to tell. That gives me hope for Skyler's future. And a lot of them looked pretty happy, and isn't that the most important thing?

We didn't meet anyone who had the same type of condition as Skyler, but we did strike up a conversation with a family whose son has a rare form of leukodystrophy. We spent pretty much the entire time talking to them, and their story was pretty heartbreaking. We started off talking about the "normal" things that special needs parents talk about, how hard it was when we found out and how the doctors and experts don't always know what's going on or don't always listen to the parents. Their little one had a G tube so we talked a bit about that. I know some things about it because of Robbie at Fertile Hope, and the newest blog I've started reading (new to me anyway) Pipecleaner Dreams (which I absolutely recommend you check out, she is a well spoken, wonderful advocate for disabled children and her posts are well written and thought out.)

Then we started talking about the specific conditions our kids have. It made me realize just how much I have to be grateful for. Their son is blind, non-verbal, and developmentally delayed. He'll never be able to take care of himself. And the prognosis is that he will die, most likely within the next few years. Most babies with his condition die while they are infants, rarely some will make it to the teen years. He has to be fed through his G tube, his diapers will have to be changed so on and so forth right up until the end. It's a genetic disorder in their case and there is a one in four chance their next child will have it. They don't want to tempt those odds, and I can't say I blame them, even though they very much want more children. They obviously didn't know about it until their second son was born. They are afraid to adopt because they already have a 2 year old son, and the 11 month old with the leukodystrophy and are finding it very challenging to have enough time for both of them.

They clearly love both their sons very much, I could see just how much care and affection they showed them both. It was heartbreaking as the father was near tears describing his son's condition and their efforts at coping with knowing their child doesn't have a lot of time. I can't imagine knowing that my son is most likely going to die within a few years. I remember when we first found out that Skyler would have to take drugs his whole life, my first and most important question was life expectancy and would this condition kill him. I mean he will have to take drugs his whole life, and will never have his own biological children, but we are so blessed that his condition is not one that will kill him. I can't imagine just watching and waiting for my child to die.

Friday, August 21, 2009


Chuck and I went out last night for dinner with his family though I'm not sure why. I guess because Chuck still loves them and whatnot, but oh man they remind me everytime we see them why I like to avoid them. Aside from the usual insults, this time we were talking about how we wanted to take Skyler to the zoo, but the weather has been horrible all summer. It's been stormy and cold most days and the few hot days were too hot to take an infant out to walk around in the sun. The conversation is progressing as it should I guess, when SIL says "Why bother? It's not like he's going to see much of anything anyway." My response was "...!?" at least I imagine that's how I'd translate it into type. Shocked silence I suppose we could call it. I'm not sure why I was shocked, they say rude things all the time.

The thing is she didn't really say it with malice or any sort of mean edge to her voice. I think she just really doesn't get it at all. Factually the sentence is true. He probably won't see a heck of a lot. He can really only see about 2 feet away from his face at most and a lot of the animals are further back, but they do have a petting zoo portion. While I admit that we take in roughly 85% of what we learn and experience through sight. But what about the rest? What about our other senses? And if you can't see very much does that mean you shouldn't bother trying to live life or experience the world?

There's a whole lot more than just how things look, there's smell, touch, and taste at the least and while I hope he isn't tasting any of the zoo animals I think he still deserves the experience. Also there is the fact that it is a lot harder for a visually impaired child to really understand what an animal is. You might show a sighted baby pictures of a cat, and their stuffed cat, and then they can see that that is what a cat is, and they see a real cat and understand hey that's the same as that picture and the same as my stuffed animal. A visually impaired baby on the other hand doesn't have much to go on. You put their hand on the stuffed toy and it feels soft, but it doesn't do anything. So as far as he knows a cat is just a ball of soft fur that doesn't move or make noise. The best way for me to show Skyler what a cat is, is to take him to my mom's place get him down on the floor with my cat and have him pet the cat, hear the cat meow, feel and hear it purring. Let him touch the tail and the legs and the whiskers, show him what it means to pet the cat gently. Tell him "This is a kitty Skyler, he's very friendly, he likes you. We have to be very gentle with the kitty." I have done this with him.

So the best way for me to teach him about animals is to take him to the petting zoo portion of the zoo, and let him experience it. Show him what a bunny is, a sheep, a goat, a guinea pig, whatever. Even the pet store is a good idea, he can hear the birds chirping and I think they let you hold some of the animals. Hmm well now I've just given myself a good idea. It looks like it's going to storm again today, but I could always take him to the pet store..

At least something good came of this.

Wednesday, August 19, 2009

9 Months!!

Today my little guy is 9 months old. My goodness, it's so hard to believe. It seems like just yesterday he was a teeny tiny thing. He's already so grown up. Ah I had a whole post I wanted to write but now I can't remember any of it. Know why? Cause we're in big trouble Chuckie and I. Just look what my little one figured out how to do yesterday.

Tuesday, August 18, 2009

A Comparison in Hats

Today I bring you a comparison in hats! We've come a long way! (and don't ask about the lovely August weather... sigh)
And one last one because he's just too darn cute!

Sunday, August 16, 2009

Long Overdue

Someone lunged and took a bite of daddy's donut. He's a quick little one!

Saturday, August 15, 2009

Gender, Sex & Infertility

So this topic has been on my mind a lot lately, and I think I need to write it out so I can get it out of my head (for now anyway). This is kind of a tough post for me to write..

What is it that makes someone a man or a woman? There is definitely the sex organs right? That's one way of determining sex. But all that really determines is male or female. It doesn't necessarily make you a man or a woman based on society's standards of what men and women are. Most people would say that you become a man when you go through puberty or you become a woman when you get your period(again puberty). Before that you are just a boy or a girl. And what causes puberty? Hormones. Hormones make you grow all sorts of hair, cause your voice to deepen, sex organs begin functioning and getting ready for the ultimate purpose of baby-making. I mean biologically that is what we are engineered to do. That is what puberty is all about. So what happens when your child doesn't have hormones?

I know that inevitably I will have to have THE talk with Skyler, and that it won't be the normal talk that all normal teens/preteens get/should get from their parents. I'm not scared about it though. I have a plan. I realize I will have to explain where babies come from and how to get a baby. You will notice I said get not make. I'm going to explain to him that when two people love each other very much (not just a man & woman, cause I believe in gay rights, and it makes it easier to explain if I can use them as an example of people who can't biologically make babies together) and are ready for all the responsiblities they discuss how they would like to become parents. There are many different ways of becoming parents. Sometimes a man and a woman can make a baby by having sex. Sometimes they can't, but even if they can't they can use other methods. (Here is where I explain surrogacy, and IVF, and donor gametes and adoption and so on.)

I'm hopeful that he'll be curious and want to know everything possible about his condition and that I can explain it all very clearly for him. I want him to be clear on everything there is to know. Chuck and I saw an episode of where a couple had a hermaphrodite baby and decided to raise him as a boy and didn't tell him anything about himself. They told him his testosterone shots were "vitamins" I couldn't watch that episode without getting extremely pissed off. I don't care if the kid is young or doesn't fully understand yet. How could someone lie to their kid about their own body? I think that's just wrong. If Skyler is young and wants to know something about himself I will find a way to explain it so he understands, tailor it to his age and ability to comprehend. I will not lie to my child and tell him it's a vitamin when really it's not.

There's another issue right there is the testosterone. I know the other hormones he takes keep him alive, those there will be no discussion about. He will learn how to take them himself and he will learn that he needs them and that's the end of that. But when it comes to testosterone.. I think I want to give him some amount of choice. Testosterone is not a live or die hormone. He does not actually need it. I think if he wants it, that's great, he can take it when he is ready (within a certain time period like 13-16 years old) but if he is happy with his body the way it is.. Well I don't think I would want to force him to do something he might regret. His body is his body. And the testosterone will probably change it, but it won't allow him to make sperm.

So if he can't produce children, it will basically just change his appearance. He will become a 'man' in terms of most body changes that happen in puberty. (Though Chuck and I know someone who had to have them and he still looks like he is 12 and he is actually 17. It's hard to see him deal with others asking him constantly if he's old enough to do such and such an activity) But he'll probably still look rather young and not be able to obtain the same "mature" look as someone with natural testosterone would. This is just difficult for me to figure out I think. I don't think I want to force them on him. I want him to make that choice himself.

I'm hopeful that if we're honest with him and straight about all of his questions he will respect us (as much as a kid can respect their parents anyways) and be able to talk to us, because we respect him. All I really want for him in life is for him to be happy. If he decides when he's older that he likes being 'less manly' or whatever and likes boys well then I will be totally happy for him. I think honestly and I kind of hate to admit this.. but I think it would make things easier if he's gay.. At least then he wouldn't feel like a failure as a man because he can't produce sperm (not that a man who can't produce sperm is a failure, but they often seem to feel like it, regardless). Really though, maybe he will decide he doesn't like kids or want kids at all anyway. And at least we know about his infertility to begin with. It isn't going to come as a surprise after years and years of trying to have a baby or something. Don't get me wrong, I'm not going to try to make my kid gay or anything. But I certainly won't be disappointed in him if he is.

Well I'm not sure what I'm trying to say here, but I love my son no matter what, and I just want to give him the best guidance I can in life, until he's old enough to make his own decisions. And this gender/sex thing is going to be one of those hard things we have to face.

Wednesday, August 12, 2009

So It Begins

I'm kind of anxious about starting a new job. I've had the same job for the last 2 years and now I'm going to be in a different environment with more kids to interact with and take care of, and I won't be able to bring Skyler with me. On the one hand I'm excited, new opportunities, new responsibilities, I'll be out of the house during the day. On the other hand, Chuck and I won't see each other nearly as much, he'll be working nights, I'll be working days. I'll probably be asleep by the time he gets home. We used to do it before, work opposite shifts, but now we have a baby so I get the feeling it will be a bit different. Then there is the issue of leaving Skyler with someone else for 3 hours a day four days a week. I know he's going to be fine, I trust her, but I know I am going to worry anyway because we've never really left him with anyone for more than an hour or so. And that's only happened like twice. Also he's going through the attachment period right now and doesn't appreciate being without mommy for any period of time.

I broke out the calculator the other day and worked out how much money we'll be making with the two of us working. Let me just say it's a lot more than we're used to.. Enough to pay off all the debts that have been accruing. So there's that to be excited about. Anyway someone was up all night long last night and subsequently so was I. So I am exhausted. Going to go try to lay down for a moment before we go swimming at my dad's.

Sunday, August 9, 2009

It's Official

Training starts August 28th. Not sure how but we'll scrape by until then I guess. I'm thinking I might be kind of screwed though for Skyler's appointments on the first and second of September if I have to take training those days. I'm going to see if I can get them off.. but I won't push my luck. Anyways I get free medical and dental, and a free family membership to the YMCA which I think will be pretty awesome. Oh and they match my pension plan thing. The only crappy part is they put me basically across town or 3 buses away. BUT it's only a couple blocks away from Chuck's work, and they hired me for split shifts 7-9am and then 3:30-6pm. The good thing is Chuck starts work at 4pm. So I'll be able to hitch a ride with him to work for the 3:30 shift. The rest I'm probably bussing it. Oh well..

So technically I'm hired for part time because it's only 27.5 hours a week even though it's mon-fri. BUT the woman who hired me said that she might have a full-timer leaving soon and if that's the case she will be offering me the full time position. She said she'd know closer to the start date if the person is going to stay or go. She's waiting for them to make up their mind. I'm okay with either, if I work the split shifts I'll have time during the day to spend with Skyler (though the back and forth thing will suck), and if I work full time I won't have to go back and forth and I'll be making a bit more than part time.

And by next year I figure I'm going to do the workplace/school program they offer for ECE. Which means I would work 3 days a week and go to school for the other two to get my ECE II certification. Which would mean a pay increase and better job title. Instead of just working there I'd be in charge of planning the activities and whatnot. She told me during the interview that they support and encourage their employees to join the program so I'm excited for that. Oh and having a real job means being able to go on mat leave with the next baby! Woohoo! (Whenever that may be mind you.. I want to wait until he's 2 or 3 before the next one, but who knows what will happen. I may end up accidentally getting pregnant or it may end up taking a lot longer than we think it will.)

Oh and thank you everyone for the suggestions/comments on the last post! I appreciate them. Oh and if you're bored or need a laugh I suggest going by Niobe's blog to check out the (Somewhat) True Confessions for the month.

Saturday, August 8, 2009

Ayudame Por Favor

I had my job interview on Wednesday. I have to wait until next week to hear back. They're hiring 33 people. Apparently there are somewhere around 30 daycare centers in our city owned by them. I'm hoping that one of the ones near my place chooses me. The interviewer said that I'd get medical and dental plans with them after 3 months. Which means I could claim Skyler's meds. That would be awesome. So I've got my fingers crossed that I hear back from them.

The last couple of weeks have been horrible weatherwise. I'm pretty sure it's because I finally have time off. So it has to be rainy, gray and cold so that we can't enjoy our time together as a family. We've been mostly stuck inside (I've been crocheting of course. Preparing for the next 10 months of lovely winnipeg winter). Today is supposed to be a big party with smolder's family out in the country, but it's so icky outside I'm not sure if it's still going to happen. Sigh. I really want to go though. It would be nice to get out of the apartment. I took Skyler for a walk the other day but it was so windy I didn't really enjoy it at all.

I've been trying to focus on speaking Spanish with Skyler more, I usually do spend a good amount of time per day naming objects and talking about things, but I tend to get caught up in all the English around me from time to time and forget to converse with my son in our other tongue. So I'm wondering if anyone has any suggestions for Spanish books or tv shows/cartoons. (I find I speak it more when I hear it being spoken or read it, like right now we're watching Handy Manny.) Since no one around here speaks Spanish, tv and books are pretty much the only way to go. Unless someone wants to be my spanish penpal/msnpal. And while Dora the Explorer is cute it only teaches one or two words in an episode so it's not exactly what I'm looking for.

So any ideas?

Thursday, August 6, 2009

Is It Just Me?

Is it just me or is my baby getting huge?? Where did my little itsybitsy baby go? (Not that I'm complaining ;)

Tuesday, August 4, 2009


Last night I had the worst asthma attack I've had in a while. It's been like 6 years since I've had one this bad. What's worse is I have no idea why it happened. Luckily I was able to wait it out, drink some coffee and sit outside and it eventually went away. If it had gotten worse I would have gone to the ER. I stopped getting my puffer years ago because I stopped having asthma attacks. What was even worse was the accompanying panic attack. Something I also haven't had in a while. Sigh.

So I finished making a hat and wrist warmers and a scarf. I gave the scarf to my mom cause it was pretty and ruffly and yeah I guess I'm just not that girly. Anyway I took some pictures, which I will post next time hopefully. Oh and I might have a job interview tomorrow.. They emailed me, but didn't get back to me with the location.. So I called and left a message asking about location and I have yet to hear back. Hopefully that pans out.

Saturday, August 1, 2009


Today we went to the Icelandic Festival in Gimli and visited the Viking Village (A couple friends of ours are re-enactors). It was fun!