Sunday, November 29, 2009

Almost December

Time is passing by so quickly I almost have no words. I'll be on winter break once Decemeber 18th hits, the kids are out of school and therefore our daycare is closed. I was planning on working at a different Y (preschool daycare open through the winter holidays) but Chuck is insisting that I take the time off to spend with Skyler. I've been feeling like an absentee parent lately. Working on odd split shift means I leave at 6:30 in the morning and don't get home until 6:30 in the evening. It's killer, somedays I get a ride to work with a friend and I don't even see Skyler in the morning. So I see him once a day for about an hour before he goes to bed. I'm starting to wonder if he thinks I am that lady with the glasses who visits once in a while.

Come summertime I think I will have to find a new job, I'm hoping to just transfer over to another Y which is a preschool daycare that is within walking distance of my house. There's no before and after school so it means no split shifts anymore, and I can walk there and back and won't need to use so much gas. I'd have more time with my son and won't have to get a ride everyday. Also it's in a Y Fitness Centre/Gym so I'll be able to work out on my lunchbreak. My coworker and I have decided to hit the gym after work a few days a week and try to lose some weight. Luckily I am actually done work at 5 each day, but I stay until Chuck is done at 6. My coworker is done at 5 too, so instead of me waiting around the school for an extra hour she's going to drive me and we're going to work out until 6 and then go home (and it's right by my place so I'll get home before 6:30 probably.)

As for Skyler he is growing up too fast! I feel like I am missing everything. The other day I was sitting in the living room with him. He was in his play area sitting in front of his toybox. I turned my head for a minute and when I looked back he was standing holding onto his toybox! I laughed and went back to what I was doing and when I looked back he was dragging his toybox across the room. WTH? He is climbing and pulling to stand with ease now these days. He's almost walking on his own too. His balance is getting so much better. Right now though he has a nasty cold that's got him not feeling a hundred percent. There's lots of congestion and he's sleeping in the swing because he can't lay flat or he won't be able to breathe. The other day he was in the swing and we have always just used the snap down part to keep him in it because he never wiggled out. Well I walked into the bedroom and he was backwards in the swing! I thought his head had twisted off the position he was in was so unnatural!

You can bet we started using the buckles in that thing after that little incident. He's also been crawling! My little tiny man is learning to crawl! And when I say tiny I mean it, he is still only about 15 pounds. I haven't weighed him in a while, but the last time I did he was still 14 pounds. I'm hoping that by now he is at least 15, but I'm not holding my breath. I was looking through all of his new clothes from his birthday. Some people who came (my cousins/aunts/uncles) hadn't seen Skyler yet, and bought him the typical 12mos clothes (so sweet of them, the outfits are so cute) and I was looking at them thinking well this he might fit into when he's three.. Sad thing is I am not even kidding, Chuck's youngest sister was only 24 pounds when she turned 3. All the kids in his family were tiny tiny babies. I on the otherhand was 20 pounds when I turned 1.

I'm glad though that at least he will grow into the clothes at some point. I'm really hoping the endocrinologist on Tuesday will say that it's just the growth pattern he's following is the same as his daddy's. But I kind of doubt it. I have the feeling we are in for an 8 hour blood test to see if he has any HGH. And if not then it'll be time to get some more drugs. On the bright side though, maybe then he will grow a bit.

Sorry for the length of this post it's been a while since I had a moment to catch my thoughts. Christmas this year should be fun, it'll be Skyler's first Christmas at home. Last year he was trapped in a plastic box in the hospital. Chuck has already strung up all the lights and we bought a tree. It's blue. We decided to be different. It's only 3.5 ft tall but we don't have a huge amount of space and it will be in storage for the rest of the year so no point in buying a huge tree. Skyler already loves looking at the lights. (Up close of course). I can't wait for Christmas with my baby, this will be our first real Christmas together as a family. Last year our hearts just weren't in it. He was on nasal prongs and so small that we couldn't hold him for very long. This year we have the CNIB Christmas party to go to, our work parties, parties with family, it should be fun!

My idea for Christmas presents since we're low on cash this year is to have Skyler make some creations with his finger paints. He loves to smear them around on paper, and this way it's handmade and from a baby. Who can resist that? Throw in a little box of chocolates or a hand crocheted scarf (made by me), and voila instant present. No one is going to complain that your gift was cheap if your baby made it right? Especially if he's blind. Haha oh I love using that one (in a joking way of course.) This year is going to be an odd one for me, as it's my first Christmas as a family with Chuck and Skyler, but also my first Christmas as the child of separation. My parents no longer live together so I have no idea how this is going to go. Wish me luck.

Anyway I hope you all are well, if there's still anyone out there in blogland. Let me know how you've been doing, catch me up. I've missed so much!

Wednesday, November 25, 2009


Things have been hectic. Skyler's parties were good, busy, lots of people he got lots of toys and clothes. If you want to see the pictures from the birthday and a slideshow I made of his life go check out his blog.

As for yesterday I had my last Autism workshop and got my certificate for the completing it. It was another extremely long day and by the end of it I was just completely drained, but I did learn some new things. I even learned something about Chuck. For as long as I have known him he has hated gentle touches. I have this thing where if someone runs their fingertips down my back or my arm I am just in heaven. When I do this to him, he freaks out. He either has a full body shake (kind of like when you get a really bad shiver) or he jerks away and gives you a dirty look (which may or may not be accompanied by an earful). He also hates the feeling of certain fabrics on his skin, and won't wear his underwear if it has fuzzies in it. He throws it out and gets a new pair. Me I just don't care that much. So I have always kind of bothered him about it, I thought it was just him being picky and a bit weird. Also he is not opposed to nice big hugs and deep massage, as long as you use enough pressure he is happy to be touched. Which is apparently the way a lot of people with tactile hypersensitivity feel.

So last night when they started talking about tactile hypersensitivity and we watched a video of Temple Grandin talking about how she hates gentle touch, and will even turn her underwear inside out etc, a lightbulb went off in my head. I came home feeling like a big jerk, both the boys were asleep when I came in, so I waited until the morning to talk to him about it. When he woke up I explained to him what I learned and I apologized for always bothering him about it. I know the reason why he has it, it has to do with childhood trauma, not autism. Regardless I feel like I at least understand one more little quirk about his personality, and now I know some ways to deal with it too which is nice.

I also learned a lot more about Autism and how to help Autistic kids. Our little guy at my program is doing great by the way. Now that I am fulltime I work with him a lot more and I can see him learning new skills and just having fun which is so awesome. We're working a lot with sequencing and using the "First this, then that" approach with activities, and using picture cards to remind him of what we're doing. It seems to be working quite well. Anyway that is what I wanted to share with you guys.

Friday, November 20, 2009

Look How Far We've Come

That's right, yesterday at 5:53pm my little monster turned one whole year old! And just like last year I'm posting about it the day after. We had a quiet birthday at home with him, Chuck made us a nice dinner and Skyler enjoyed it. He opened a present from aunty and let me tell you he loves ripping wrapping paper. I can't wait for tomorrow, because it's his first first birthday party, no that's not a typo. Sunday is his second first birthday party, if you get what I mean.

It`s amazing how far we`ve come.

(not pictured, the rest of his toys.)
(oh yeah tomorrow my living room becomes a Fi.sher Pri.ce catalogue, or possibly a To.ys R U.s)

Saturday, November 14, 2009

Ghost Child

You know that feeling when you aren't quite awake yet and you feel something or you think something that you later on realize is quite crazy? Well every morning for the longest time, in that moment before I actually wake up and reality sets in, I keep thinking I have two children. Every time Skyler wakes me up by crying I think "Uh oh I hope he doesn't wake up the other one." And sometimes as I'm falling asleep I think that they're both sound asleep in the bedroom. Not realizing that I only have one child sleeping in the bedroom. I know it sounds crazy, or like I'm making it up, but I swear I'm not. For as long as it's been happening I've been brushing it off, but I'm starting to think more about it. Logically and while I am actually lucid I know for a fact that I only have one living child, but in those moments between waking and sleeping I know that I have two. Or at least my subconscious feels that I have two. It's actually getting to be kind of disturbing because as I'm falling asleep or waking up I find myself worrying about a child who is not even with us. Though I suppose if I am thinking of her this much, she must be with us in some form or another.

Sorry for the ramblingness of this post, it's 2am and I've just woken up and not been able to fall back asleep yet.

Wednesday, November 11, 2009

Not Enough Hours in a Day

Sorry it's been a while again. I'm not feeling nearly as ranty as before. More of an update than anything. Monday was a 15 hour day for me. I start work at 7, which means I leave my house at 6:30am, I have a break between 1:30 and 3:30, but my work is so far from home that I usually just stay there and keep working through my break. And then I'm done at 5:30, but Chuck works until 6 so I stay because he is my ride home obviously. So Monday after my usual 12 hours out of the house I had to go to an autism workshop with a coworker. It was good, I'm glad I went, I learned a bit about autism and how to help autistic children make social connections with people, which is very difficult in most cases.

In other news, my lesson plan is going well. The kids love dark tag (a game my friends and I came up with as kids, one person closes their eyes, we turn down the lights and the person who's it tries to find us by listening to where we are, etc) and they've been learning about what it means to be blind and that blind people are very capable. I hope the ASL part goes just as well. Anyway I have been exhausted the last few days so I am off to bed. I hope my Canadian friends had a sombre remembrance day. And I'm not sure when the American equivalent is, but I hope you have a good moment of reflection and take the time to remember those we've lost to violence and war..

Sunday, November 8, 2009

Ranting & Raving

You might want to skip the last half of this post because it's basically one long vent. So if you don't want to read that part, just stop when you get to the picture of Skyler.

So I realized today that I forgot to tell you guys what happened with his appointment with the NP and the gasping thing. She thinks it was just reflux from eating too much, which is what it sounded like to me too. She said if he keeps it up though to schedule an appt with his paediatrician. So far so good, no gasping the last few days whatsoever. I'm thinking we may be in the clear on that one, hopefully.

Now on to the bad news. He's not gaining or growing the way he should be. That's right folks my (almost) one year old weighs a grand total of 14 pounds. The funny thing is when people see how small he is and I tell them he was premature they always say things like "Oh so-and-so was premature and he's 6ft tall now." Yeah because that's what I'm worried about. My child has hypopituitarism and is prone to dwarfism because he can't produce his own human growth hormone, I'm not exactly shaking in my boots because being born two months early is going to make him a shrimp forever. Even if he had been born right on time he would still be this tiny, because his body just can't make itself grow. Once it's done using up all the insulin and whatnot that it uses to grow for the first few years well, then it's onto the manufactured HGH. Which it seems like we may have to do now.

I'm a little freaked out. It's just.. this is too early. He was supposed to be able to grow on his own until around 2 years old. That's what the doctors estimated anyway. It just seems like it's too soon. Chuck and I have to bring our growth charts from when we were babies to his endocrinologist to see if he's following our growth patterns. We pulled out Chuck's and he was only 18 pounds at one year old. So he was pretty tiny too. I'm not sure what mine says, I still have to go to my mom's place to find it. I don't think it's going to matter much anyway though. His endocrine appointment is Dec 1st. The next step after that is an 8 hour long blood test. They test and retest and retest and retest his blood for HGH because it's hard to detect. Our bodies use up the HGH almost as soon as it's made. So hopefully they find some in his system or else it's more drugs for my beautiful baby boy.

HGH has to be administered once a day 6 days a week by needle, right up until he stops growing (around the time we start the testosterone for puberty or just after). I'm not exactly looking forward to giving my baby a shot each day. I know he needs it, and I know I will do it. I just think this sucks. I'm not one to feel down like this, for the most part I think I'm pretty positive about everything to do with his special needs. It's just this is hard for me, I've always been relatively against drugs of any kind, I think our bodies should be able to for the most part take care of themselves. So the conundrum of having a baby whose body can't take care of itself.. I worry about these drugs he has to be on, what about side effects? I mean you can't take something for your entire life and not have side effects. The worst part is I know that that just has to be a part of his life. Because he needs them to live and grow and thrive. It's kind of a sucky feeling.

My supervisor was there when I called Chuck to see how the appointment went and I told her after I got off the phone about the whole HGH thing. She knows he's special needs of course and about his NICU thing. I think she was trying to be comforting when she said "There's always something, even with kids who don't have special needs." I'm pretty sure this was her way of trying to make me feel less alone or something. But honestly, while I think it's true there are always things to worry about even with a typical child, I don't think it's the same. Maybe you have to take your kid to the dentist to get a filling. Sure that sucks, but you don't have to give them a needle every day just to make sure they grow, or jump up and adjust the dose of pred everytime they sneeze. Or freak out because you forgot to give your kid his thyroxine two days in a row. A mom of a typical kid might feel horrible because she was tired, and turned her back for a second and the baby fell and bumped her head. But when I am exhausted from being away at work 12 hours a day and I forget to give him his meds he could have a seizure or his body could shut down. Obviously we hardly ever forget to give him his pred, but sometimes we're a bit late. The point is that this is what I worry about. I don't think it makes me a better mom than anyone else, but I also honestly don't think it's fair to say that someone knows what I am going through when their child is "normal" and mine is about to do an 8 hour blood test, and then likely start taking yet another drug each day.

Okay, phew. Sorry, I didn't intend to rant nearly that much. Apparently something was pent up inside. Sorry I flew off the handle there. I just had to get that out. I'm done now, I think I feel better.

Saturday, November 7, 2009

My First Lesson Plan

I just made my first ever lesson plan for the week. Monday and Tuesday we'll be talking about blindness and Braille, Wednesday is Remembrance Day, and then Thursday and Friday we'll be doing deafness and ASL. My supervisor already approved my lesson plan, I just have to put it into action. I'm glad we have wednesday off. I wanted to go visit my papa in the cemetery since he was in both the second world war and in the korean war, but I think the military section at the cemetery will be too busy, especially since he is buried in the largest cemetery in the city with the largest military section. So I think we may go this weekend to bring him his poppies like we do every year. I wish I had more to write about, I just can't think right now.

Wednesday, November 4, 2009

School Woes

Sorry it's been so long. Halloween was great, we had a wonderful time. Hope yours was fun as well. Since last night Skyler has been randomly gasping, which is rather alarming. We made an appointment today to take him in to see his NP tomorrow first thing in the morning. I'm going to have to miss the appointment, which I'm not happy about, but unfortunately I have to work. He's got a lot of boogers it seems, I'm thinking he's just sort of choking on his snot so I'm hoping it's nothing major. Of course we are checking to make sure he's not turning blue or not getting enough air. The thing is these gasping episodes are very short, a few seconds only, and not extremely frequent, it's just scary. Fingers crossed that it's not some horrible respiratory problem or the scariest yet H1N1.

Work/School has been crazy. I've been so busy with my kinders, we have a few who are very hyperactive and some who just don't like listening. So we had a few serious discussions today about respecting our teachers and our friends and how to listen nicely when it's another person's turn to talk.

We also had an incident today where a child (in grade 3) didn't know they were supposed to be going to our program after school and went to meet their parent outside, but go figure, parent wasn't picking them up and so we were frantically searching around for said child and calling parents asking "is your child coming to our program today or have you picked them up?" which we didn't realize mom had custody during certain months and dad has custody during other months. So now dad is mad because he thinks mom didn't communicate well enough with the child and they're doing the whole custody battle thing. /sigh. Anyway we just did what were supposed to do and called the numbers listed on the contact sheet. Mom wasn't mad at us, and actually thanked us for doing what we were supposed to do. But I can't help but feel a bit bad now, I don't want anyone to lose custody of their child.

Today we had another CNIB OT appointment, and our OT has someone in from Saskatchewan's CNIB children's program who is learning about our province's program so she brought her along to show off her favourite family (us of course. Haha.) okay maybe more like favourite baby, it was all about Skyler and his cuteness. He showed off of course, and our OT is very pleased with him, he is lifting himself up while on his stomach very well, and he's making eye contact a lot and also turning to sounds and then paying attention visually. It was a great visit as usual and we scheduled our next appointment with her for his birthday!! I'm excited, I would be happy have her visit on his very first birthday. She is our favourite person on his team of professionals. Though his opthalmologist and neuro come in a close second/third. I think we see her so much more than the others and that's why she's our favourite. Skyler even loves cuddling her.

I just got back my fourth assignment from Hadley and I got an A+. I love learning new things about child development especially relating to blind/visually impaired babies. Anyway that's all for me, I hope you all are well.