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.

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.

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.

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. :)

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.

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.