Tuesday, March 31, 2009
Sharing
Sharing this blog with someone from my "real world" feels a lot like the first time you undress in front of a lover. Obviously you trust them or you wouldn't get naked (unless you're drunk or otherwise incapacitated) but there is still this sense of vulnerability. You've just laid bare your whole soul. How can they see you with clothes on again and not remember what's underneath? However along with the vulnerability thing comes this sense of familiarity, you're no longer afraid of someone finding out what's lurking in the depths of your mind because you've already shown them.
Monday, March 30, 2009
Mom Knows Best
Okay, so lets just say I have slept all of 6 hours in the last 3 days, and not all at once. Which is why I somehow confused Opthamology with Neurology. His appointment today was with the Pediatric Opthamologist. And apparently there is more than one in the city, this guy has a sexy British accent and was super nice. I liked him a lot. He took us seriously and said that because we're concerned about his vision and have said that he doesn't look like he is seeing as well as he should be, that means something to him.
Aaaand he confirmed what I already knew, and what I already told all of you earlier on in my blog. Skyler can see shadows, and light, and we're not sure if there's much else. His optic nerves are small, his eyes technically are fine, his brain is (probably) fine, but the nerves connecting the two are small and don't let in much light which means he cannot see much. The doctor is hopeful he says that he might be able to see shapes and may even be able to walk without a cane. We are going to monitor him over time, we're going back in six months. He may be able to focus a little better later on. BUT there is nothing that can be done about hypoplasia. His optic nerves are just like that, and no one can fix it.
And remember I mentioned something called septo-optic dysplasia? Well I asked him, and he said yes that is the reason the endocrinologist recommended he check Skyler out, and after he was done his examination I asked if it fit, and he said Yes. This is consistent with the diagnosis of Septo-Optic Dysplasia or de Morsier's Syndrome. In other words ladies and gentlemen, I was correct. So our lovely new opthomologist is referring us to the CNIB which is the Canadian National Institute for the Blind. There we will get involved with the Early Intervention program. Which will be awesome, lots of resources and help with his development from early on. I really appreciated that the opthamologist said that if we the parents were concerned about his vision then he was as well. I liked that he took us seriously and didn't talk down to us like we were idiots. Plus the sexy accent didn't hurt things either.
Oh and one more piece of good news. The opthamologist said there is no reason to believe that it's hereditary. He told us not to worry about our future children having it.
So to make my point, don't doubt yourself too much and if you know in your heart something isn't right don't let people tell you to just forget about it and not to worry about it and make you feel like you're crazy. Oh and as for me and how I'm holding up, I'm great. I now know what is wrong with his vision more or less, and I know what we can do about it. It can't be fixed but we can definitely work with it. And Skyler? Well he is as happy as he always was.
Neuro
The neurologist's office called this morning, they have an opening for us at 1pm... today. I have my fingers crossed we leave with an answer instead of more questions. Wish us luck.
Sunday, March 29, 2009
Don't Feel Sorry For Us
We don't.
I've had enough of people pitying me and my son. "Oh no he's blind that's so sad I'm so sorry for you." or "Poor kid I can't imagine." and the classic "That's so horrible, what kind of life will he lead?" and my favourite "What a horrible burden on you this must be."
Yes these are the standard, appropriate responses. But I am sorry, I have had enough of them. Don't be sorry that my son was born the way he was, he is my son and he is perfect. So what if he can't see? That doesn't make his life worth any less than yours or mine. It doesn't mean he is something to be apologized for. I am not sorry I had him, I am not sorry at all. And I'm not sorry for him, his life will be different it doesn't mean he is doomed to be miserable and feel like his life is less than that of others. No he won't experience the world the same way as you and I, but so what? He will still experience the world in his own way.
I can't wait to start showing it to him, to place a block in his hands and tell him it's square, it's smooth, it's a block.. I can't wait to show him his first kitty, to show him how we pet a cat, to be gentle, and that cats meow, and they have soft fur. I can't wait to introduce him to every kind of music. To teach him to play piano if he wants to. To show him how to read braille. I can't wait until he is 16 and we can take him to the Guide Dog school in Ottawa and get him his own guide dog. Just because he can't see does not mean he is a burden on me or anyone. He is a person, and I have a feeling he will be a great one. Blind or not.
Thank you.
I've had enough of people pitying me and my son. "Oh no he's blind that's so sad I'm so sorry for you." or "Poor kid I can't imagine." and the classic "That's so horrible, what kind of life will he lead?" and my favourite "What a horrible burden on you this must be."
Yes these are the standard, appropriate responses. But I am sorry, I have had enough of them. Don't be sorry that my son was born the way he was, he is my son and he is perfect. So what if he can't see? That doesn't make his life worth any less than yours or mine. It doesn't mean he is something to be apologized for. I am not sorry I had him, I am not sorry at all. And I'm not sorry for him, his life will be different it doesn't mean he is doomed to be miserable and feel like his life is less than that of others. No he won't experience the world the same way as you and I, but so what? He will still experience the world in his own way.
I can't wait to start showing it to him, to place a block in his hands and tell him it's square, it's smooth, it's a block.. I can't wait to show him his first kitty, to show him how we pet a cat, to be gentle, and that cats meow, and they have soft fur. I can't wait to introduce him to every kind of music. To teach him to play piano if he wants to. To show him how to read braille. I can't wait until he is 16 and we can take him to the Guide Dog school in Ottawa and get him his own guide dog. Just because he can't see does not mean he is a burden on me or anyone. He is a person, and I have a feeling he will be a great one. Blind or not.
Thank you.
Wednesday, March 25, 2009
Photo Tag
I've been tagged by She over at White Picket Fence. Out of the 1000's of pictures I have of my baby I ended up with a picture of a tree/shrub as the one for this post. I guess this is a window into who I am, I tend to take pictures of anything pretty I find in nature. Trees, flowers, water, birds, etc. I thought this was a very colourful/pretty shrub/tree.
Rules are open your sixth picture folder and post the sixth picture and give a bit of background about it. Tag 4 people. I'm tagging , Mrs. Spit, Becky, Ya Chun and Karen. Have fun ladies.
In Azaera's world the news today is pretty good. Baby's cold seems to be getting better and I have developed an unhealthy addiction to watching House and writing stories with my friend.
Sunday, March 22, 2009
A Post About Sophie
I don't know why but for some reason it is always the springtime that reminds me the most of my would-have-been-daughter. The other day I told one of my closest friends about Sophie. We don't talk about her much not to anyone. I think so C and I she is very sacred, we don't like the thought of sharing her. And with Skyler's "condition" (I hate that word..) that people will say stupid things like "Well it just wasn't meant to be, there was probably something wrong with it and it would have died anyway". It isn't hard for us to believe that people would say that kind of thing especially after C's grandmother and mother both told me that Skyler would be stillborn.
The thing is I felt alright about sharing it with my friend.. and now I am thinking about sharing this world with her. Perhaps I will let her know I have a blog.. I always thought that this is where I come to put my most darkest secrets and that if people who I knew in real life knew about it that it would complicate things. I suppose I am worried she will see me in a different light.. Perhaps not. I was slightly uncomfortable with the idea that someone would know everything that's bouncing around in my head, and know me in the flesh. But I do believe I trust her enough.
It was March last year that I bought Sophie her flowers. I don't know what it is about the spring time but it reminds me of her. I suppose springtime is when new life blooms, the world seems to come back to life. I don't know why I would think of the one who died at the time of year when everything is coming back to life. I suppose it's obvious though, death and new life go hand in hand. I went back to my first post today, and I guess I missed my blogoversary, and I noticed another thing. It was the 17th, and that day that held so much significance before, I seem to have totally forgotten. I mean January 17th this year I did pause for a moment and remember that my baby was due and that I lost a baby that day.. But each month the 17th has slipped past me completely unnoticed..
I realize I was only two or three months along when I lost her, and all I had to show for it afterwards was a small empty barely there babybump causing my mom to remark that I had gained weight. Thanks mom that's what I want to hear after miscarrying. It wasn't her fault though, she didn't know I was pregnant to begin with. Sometimes I wonder what life would have been like if Sophie had lived. Sometimes I wonder what stopped her from going to full term. I still think it was something I did. Maybe if I hadn't broken my arm in November and taken the morphine and whatever else they gave me.. Maybe this maybe that. I suppose the entire point is moot. She is gone, and I have a beautiful son.
I can't just let it go that easily though. I have so many mixed emotions. I wonder if her brain didn't form quite right, was her pituitary in the wrong place? Was she missing the corpus callosum? Would she have been like Skyler? Did something else go horribly wrong?
In some strange twisted way, the product of me losing her is sitting in a swing right now taking a nap. I mean if she hadn't died he never would have been born. And if I hadn't ever been pregnant with her and lost her I doubt we would have tried so hard to have another. It is because she existed however briefly that I now have my son. And I wonder too about our future children. Will I miscarry again? Will I have a stillbirth? Will I have more babies with de Morsiers? Will the next one be born so early that it doesn't make it? We have to go to a geneticist next time I get pregnant, perhaps they will have more answers for us. I don't know.
I just don't know. This spring I will get her more tulips though, and I will bring her baby brother to the flowers and let him feel them and smell them and tell him more about his sister. Sophie we love you, and we miss you.
Saturday, March 21, 2009
Doing Good
We're still around, hanging in there. Sky has a cold, scared the crap out of us. He turned blue Sunday night and was coughing a bit. His temp was up to 37 which is abnormal for him he is usually around 36. Took him to Children's ER. We were there until 6am. So exhausting. Doctors checked him out and said he'd be okay, not RSV just keep an eye on him. We have been of course. He's been sniffly and coughing a bit, but overall not bad.
Can't help but laugh at that last one. :D
We also took him for his first swim, he loved it. We went with a couple of friends who have a son a couple months older than Skyler. It was a nice heated kiddie pool, and we kept his head above water. He didn't fuss at all and seemed to have a great time with it. He's been hitting more milestones. Holding his head up amazingly well, and he loves sucking on his hands, and grabbing toys.
C wants me to tell you about the incident today in the parking lot. After we deposited my cheques we were sitting in the car because I needed to breastfeed (mall parking lots are my new favourite place to breastfeed) and some elderly woman opened her car door right into our car so hard that it shook the entire car. We were both startled. C got out and tried to speak to the woman, she kept saying she did nothing wrong, but really lady you shook our whole car. She refused to apologize and eventually walked off. C is still pretty mad about it.
We've been watching House a lot lately. I find Hugh Laurie strangely attractive for some reason. Of course most British guys tend to be hot for some reason.. Ok well maybe not all of them..
And a bonus for reading yet another boring post!
Can't help but laugh at that last one. :D
Tuesday, March 17, 2009
Baby You're Not Lost
I've had my cry I've accepted it, if he is blind then he is blind, and well if his eye muscles are taking their time to develop well then fantastic! I'm leaving the issue alone until I get an actual diagnosis from the opthmaologist. And in the meantime I am doing my very best to stimulate those eye muscles. We think he may have been focusing a bit yesterday on one of his toys, he was smiling and it looked like he was looking at it. So yes I am holding out a bit of hope that his eye muscles are just slow to develop or that he has some low grade amount of sight. I'll be happy with whatever I get, even if he is blind we will adapt.
I'm not dwelling on it or worrying about it, I called his NP yesterday and just made sure of the appointments and asked her about the de Morsier's syndrome, she said the neurologist and opthamologist will have to make that call, which I knew. So I'm leaving it at that. He is my son regardless of anything, and he hasn't changed, he is the same baby he was before I realized he wasn't seeing much of anything. He is still himself regardless, and I love him exactly the same as before.
We're scheduled to the enth degree which is crazy because I have never had this many appointments and groups to go to in my life. You'd think I'd be burned out, but I'm actually taking it in stride, C and I seem to have united against everything and are doing very well. We had our first home visit from the Families First home visitor, I loved it. She's only a year older than C and I, and as we were chatting I mentioned that C was from the country (I've always been a city slicker) and she asked where, he told her the small town he grew up in. What do you know that's where she's from too. C told her he knew she looked familiar, and they launched into a discussion about people from their hometown and all that. It was awesome. She said the first visit is just to get to know each other. We had a great time and laughed a lot. She explained a bit about what they do, and we talked about Skyler.
It turns out she even has the same degree I'm going for. She told me how much she used to make when she worked at a daycare. Not bad cash I must say.. She said with my ECE I could do the same job she is doing, and she mentioned that she makes a fair bit of money. She also told me I could work at a daycare and take my ECE at the same time and the government will pay for my schooling. All good stuff to know. I'm quite excited about the families first program. I think it will be good, we were comfortable with her, and vice versa.
Last night we did an intense spring cleaning. While I was at work C took everything out of our bedroom, including an insane amount of clothes (he emptied all 3 closets and we own a LOT of clothes). He washed all the laundry and we went through all the clothes and made three big garbage bags full of clothes for charity. We cleaned out so much junk and rearranged all the furniture in our bedroom. I must say it looks gigantic now. I mean it's a huge room, but the way the furniture is laid out now it looks very spacious. I love it. The bed and the crib are across from each other, and right by the window and ah it just feels so much nicer. We cleaned out the living room too. Just the kitchen now needs a bit of tidying.
It feels great now that it's all done, but man was it exhausting. I came home from working all day with baby and had to sort through and fold and hang the biggest mountain of laundry I had ever seen, and I took out 3 bags of garbage to the bin outside. We were up until about 2am, and then of course shortly after going to bed Skyler woke up with gas pains. We made it through the night and didn't even get frustrated with each other in the slightest. Which when you're completely drained is quite the feat.
I thought I would be freaking out and whatnot, which believe me I did my fair share of freaking out the other day, but I feel pretty good actually. We're so well connected within the community that I have no doubt that we will be able to work with whatever we're up against with Skyler's development, and that we will be able to provide for him whatever he needs. I mean I basically have to accept that it's out of my hands. My child is who he is and whatever issues he has we will just learn how to work with them.
When you feel like you're done
And the darkness has won
Baby you're not lost
~Michael Bublé
I'm not dwelling on it or worrying about it, I called his NP yesterday and just made sure of the appointments and asked her about the de Morsier's syndrome, she said the neurologist and opthamologist will have to make that call, which I knew. So I'm leaving it at that. He is my son regardless of anything, and he hasn't changed, he is the same baby he was before I realized he wasn't seeing much of anything. He is still himself regardless, and I love him exactly the same as before.
We're scheduled to the enth degree which is crazy because I have never had this many appointments and groups to go to in my life. You'd think I'd be burned out, but I'm actually taking it in stride, C and I seem to have united against everything and are doing very well. We had our first home visit from the Families First home visitor, I loved it. She's only a year older than C and I, and as we were chatting I mentioned that C was from the country (I've always been a city slicker) and she asked where, he told her the small town he grew up in. What do you know that's where she's from too. C told her he knew she looked familiar, and they launched into a discussion about people from their hometown and all that. It was awesome. She said the first visit is just to get to know each other. We had a great time and laughed a lot. She explained a bit about what they do, and we talked about Skyler.
It turns out she even has the same degree I'm going for. She told me how much she used to make when she worked at a daycare. Not bad cash I must say.. She said with my ECE I could do the same job she is doing, and she mentioned that she makes a fair bit of money. She also told me I could work at a daycare and take my ECE at the same time and the government will pay for my schooling. All good stuff to know. I'm quite excited about the families first program. I think it will be good, we were comfortable with her, and vice versa.
Last night we did an intense spring cleaning. While I was at work C took everything out of our bedroom, including an insane amount of clothes (he emptied all 3 closets and we own a LOT of clothes). He washed all the laundry and we went through all the clothes and made three big garbage bags full of clothes for charity. We cleaned out so much junk and rearranged all the furniture in our bedroom. I must say it looks gigantic now. I mean it's a huge room, but the way the furniture is laid out now it looks very spacious. I love it. The bed and the crib are across from each other, and right by the window and ah it just feels so much nicer. We cleaned out the living room too. Just the kitchen now needs a bit of tidying.
It feels great now that it's all done, but man was it exhausting. I came home from working all day with baby and had to sort through and fold and hang the biggest mountain of laundry I had ever seen, and I took out 3 bags of garbage to the bin outside. We were up until about 2am, and then of course shortly after going to bed Skyler woke up with gas pains. We made it through the night and didn't even get frustrated with each other in the slightest. Which when you're completely drained is quite the feat.
I thought I would be freaking out and whatnot, which believe me I did my fair share of freaking out the other day, but I feel pretty good actually. We're so well connected within the community that I have no doubt that we will be able to work with whatever we're up against with Skyler's development, and that we will be able to provide for him whatever he needs. I mean I basically have to accept that it's out of my hands. My child is who he is and whatever issues he has we will just learn how to work with them.
When you feel like you're done
And the darkness has won
Baby you're not lost
~Michael Bublé
Sunday, March 15, 2009
And Then The Walls Came Tumbling Down
Do you ever have those moments, like hit you like ton of bricks in the face kind of moments? We had one today. I think I found out what my son has exactly. Some of you may remember a post I made in January when they gave me his diagnosis. It was called Ecto-what? (the post not the diagnosis) I was digging around with that site Niobe linked. I finally remembered what it was called, Ectopic Posterior Pituitary Lobe. So I consulted the wonderful Dr. Google and found out that the Ectopic whatchamacallit diagnosis does not usually come alone. It comes packaged as a bundle with some friends, and together they are called Septo-Optic Dysplasia. Also known as de Morsier Syndrome. And what's more we looked at the symptoms and we checked off every single one of them. Skyler is only missing one of the symptoms the Diabetes one, and I researched as to why that is, some kids with SOD (Septic Optic Dysplasia) have no pituitary gland at all or are lacking the posterior, and so they end up with diabetes. His lacking diabetes is consistent with him having the eptopic posterior pituitary.
I know this all sounds like gobble-do-gook, but as the most educated person on Skyler my son I can tell you that I know him, and I know how he behaves, the things he does and does not do, the physical characteristics that he exhibits that match the symptoms and signs of this disorder. I am not a medical doctor, however tomorrow as soon as the endocrinologist's office opens I will be calling them and asking them about the possibility that my son has this condition. The reason they did not diagnose it is that it is not singularly an endocrinology problem, the other parts of the syndrome manifest themselves in ways that will have to be diagnosed by an opthamalogist and a neurologist. Appointments which we are still waiting on.
Now for the ton of bricks part. We were reading the symptoms and how one of them is visual problems. Mainly the optic nerves are weak. In some cases the child can see but not very well, in other cases the child cannot see anything but lights and shadows. We were reading this and thinking well at least Skyler isn't blind..... is he? and then the walls came tumbling down around us. We examined all of his symptoms. What does he focus on? My computer screen late at night when it is dark and my screen is lit up. The tv at 4am when I hadn't turned a single light on in the house.. His toys that make noise, when you jingle them he will turn to find them but he will not focus directly on them. When I thought he was looking at my face he was only turning to the sound of my voice. We checked to see if he could mimic us, and indeed he was sticking out his tongue while I was (but his eyes were looking elsewhere and not at me) so we stuck my tongue back in my mouth and he continued to stare into space and stick out his tongue at nothing. He was not mimicking us at all.
Whenever he would smile we would talk very highpitched and smile at him, we thought he was smiling back at us, but he was smiling because he could hear the change in the pitch and tone of our voices. I did a test, I grabbed his most bright colourful toy that he usually responds to, and I jingled it, he turned his head toward it, but his eyes did not focus on it. Then I moved the toy from side to side without jingling it, nothing. He stared at the same spot he had heard it last. Then I jingled it at the opposite side of his head, and he turned his head toward the sound but again did not focus at all rather just stared into space. Now all we do is call his NP and his specialists tomorrow and see if we can't get his appointments moved up, and wait for the official diagnosis, but as far as I know,
Ladies and Gentlemen my son is blind.
I know this all sounds like gobble-do-gook, but as the most educated person on Skyler my son I can tell you that I know him, and I know how he behaves, the things he does and does not do, the physical characteristics that he exhibits that match the symptoms and signs of this disorder. I am not a medical doctor, however tomorrow as soon as the endocrinologist's office opens I will be calling them and asking them about the possibility that my son has this condition. The reason they did not diagnose it is that it is not singularly an endocrinology problem, the other parts of the syndrome manifest themselves in ways that will have to be diagnosed by an opthamalogist and a neurologist. Appointments which we are still waiting on.
Now for the ton of bricks part. We were reading the symptoms and how one of them is visual problems. Mainly the optic nerves are weak. In some cases the child can see but not very well, in other cases the child cannot see anything but lights and shadows. We were reading this and thinking well at least Skyler isn't blind..... is he? and then the walls came tumbling down around us. We examined all of his symptoms. What does he focus on? My computer screen late at night when it is dark and my screen is lit up. The tv at 4am when I hadn't turned a single light on in the house.. His toys that make noise, when you jingle them he will turn to find them but he will not focus directly on them. When I thought he was looking at my face he was only turning to the sound of my voice. We checked to see if he could mimic us, and indeed he was sticking out his tongue while I was (but his eyes were looking elsewhere and not at me) so we stuck my tongue back in my mouth and he continued to stare into space and stick out his tongue at nothing. He was not mimicking us at all.
Whenever he would smile we would talk very highpitched and smile at him, we thought he was smiling back at us, but he was smiling because he could hear the change in the pitch and tone of our voices. I did a test, I grabbed his most bright colourful toy that he usually responds to, and I jingled it, he turned his head toward it, but his eyes did not focus on it. Then I moved the toy from side to side without jingling it, nothing. He stared at the same spot he had heard it last. Then I jingled it at the opposite side of his head, and he turned his head toward the sound but again did not focus at all rather just stared into space. Now all we do is call his NP and his specialists tomorrow and see if we can't get his appointments moved up, and wait for the official diagnosis, but as far as I know,
Ladies and Gentlemen my son is blind.
Saturday, March 14, 2009
High Maintenance
I want to thank you all so much for all the heartfelt words. It's amazing to have such a wonderful outpouring of support. That website you linked is fantastic Niobe. I wish we had a similar organization in Canada, but I haven't found one yet. Either way there is lots to read on that site. We have so much to talk about Becky. How long has Lily had nystagmus? And thank you everyone for reminding me that I'm strong and I can do this.
Today was pretty good, I went to my Coping With Change workshop, we talked about accepting our emotions, anger, guilt, frustration, disappointment, sadness. The workshop leader told us that it's perfectly normal to feel sad and angry and everything else after having a baby even if it was the only thing in the whole world that we wanted, she said it doesn't mean you love your baby any less, we're on a rollercoaster of emotions. She even talked about women who go through infertility and grieve for the loss of the baby they believe they'll never have and then end up pregnant and confused, and then feel guilty for not being completely fulfilled as a mother. Even if all they ever wanted was a baby and then they feel like a horrible mother for complaining about how hard it is. But it is hard and it's okay to acknowledge that.
I talked a bit about being a "special needs" parent. And how sometimes I feel angry and resentful that "everyone else" (really it's not everyone, but it feels that way sometimes) ends up with the perfect baby who gets to come home immediately from the hospital and then they complain about diaper rashes and how fast their baby outgrows his/her clothes. But as I explained I'm not mad at Skyler, or C or myself or anything tangible, it's just this frustration that I have to get out. It's not even that I hate the appointments, they are a pain in the butt, but I'm happy and grateful that we have them all to make sure he is doing as best he can. No for me it's the knowledge that I will one day have to sit him down and explain to him that he will never have biological children that kills me. It's knowing that as soon as he is old enough to run around I will have to get him a medic alert bracelet, and he will forever carry around his dependancy. That I am going to be one of those stressed out over protective moms who doesn't want him to do anything stressful because his body just can't cope with the stress. For instance I don't think I will ever allow him to participate in contact sports like hockey or football. Ah well, it's for the best, too many injuries.
In the positive again, C and I have come up with a name for Skyler's issues, neither of us were happy with the term "special needs" so we've decided he is a high maintenance baby/kid. High maintenance seems to fit him better anyway, he needs more work (administering meds, watching for any sign of stress) but it's too early to say if he will be developmentally delayed or speech delayed or autistic or any of that. If he is, well we will just learn to deal with it. We're pretty well equipped since we've already got all this down.
After my workshop one of the program coordinators at the center came and introduced me to my home visitor. I signed up for a program called Families First where a home visitor comes to your house once a week and helps you come up with things to help your baby's development. They evaluate where the baby is at, and they show you games to play with them to help them strengthen any weak areas. They show you crafts you can do, toys you can make for your baby, and all sorts of other things. They also connect you with any other resources you may need. I really liked the girl who will be visiting us. And she said she would be willing to come along to any OT appointments as well so they can work together with his development. I think that's fantastic. I'm also getting us involved with another program called Children's Special Services where they get you in touch with everything you need as a special needs parent. Therapy programs, any medical devices he may need, counselling, programs to help with development, etc. I'm trying to establish as many supports as I possibly can.
As for Skyler he is being as adorable as ever. Smiling and jabbering away at me and C and N. She thinks he is the coolest thing since Mickey Mouse. Today N spent a good ten minutes talking to Sky and telling me "Look at him! Look at him, he's smiling, he's making funny faces" As she's saying this I'm thinking ahh you have no idea, I could stare at him all day long.
Today was pretty good, I went to my Coping With Change workshop, we talked about accepting our emotions, anger, guilt, frustration, disappointment, sadness. The workshop leader told us that it's perfectly normal to feel sad and angry and everything else after having a baby even if it was the only thing in the whole world that we wanted, she said it doesn't mean you love your baby any less, we're on a rollercoaster of emotions. She even talked about women who go through infertility and grieve for the loss of the baby they believe they'll never have and then end up pregnant and confused, and then feel guilty for not being completely fulfilled as a mother. Even if all they ever wanted was a baby and then they feel like a horrible mother for complaining about how hard it is. But it is hard and it's okay to acknowledge that.
I talked a bit about being a "special needs" parent. And how sometimes I feel angry and resentful that "everyone else" (really it's not everyone, but it feels that way sometimes) ends up with the perfect baby who gets to come home immediately from the hospital and then they complain about diaper rashes and how fast their baby outgrows his/her clothes. But as I explained I'm not mad at Skyler, or C or myself or anything tangible, it's just this frustration that I have to get out. It's not even that I hate the appointments, they are a pain in the butt, but I'm happy and grateful that we have them all to make sure he is doing as best he can. No for me it's the knowledge that I will one day have to sit him down and explain to him that he will never have biological children that kills me. It's knowing that as soon as he is old enough to run around I will have to get him a medic alert bracelet, and he will forever carry around his dependancy. That I am going to be one of those stressed out over protective moms who doesn't want him to do anything stressful because his body just can't cope with the stress. For instance I don't think I will ever allow him to participate in contact sports like hockey or football. Ah well, it's for the best, too many injuries.
In the positive again, C and I have come up with a name for Skyler's issues, neither of us were happy with the term "special needs" so we've decided he is a high maintenance baby/kid. High maintenance seems to fit him better anyway, he needs more work (administering meds, watching for any sign of stress) but it's too early to say if he will be developmentally delayed or speech delayed or autistic or any of that. If he is, well we will just learn to deal with it. We're pretty well equipped since we've already got all this down.
After my workshop one of the program coordinators at the center came and introduced me to my home visitor. I signed up for a program called Families First where a home visitor comes to your house once a week and helps you come up with things to help your baby's development. They evaluate where the baby is at, and they show you games to play with them to help them strengthen any weak areas. They show you crafts you can do, toys you can make for your baby, and all sorts of other things. They also connect you with any other resources you may need. I really liked the girl who will be visiting us. And she said she would be willing to come along to any OT appointments as well so they can work together with his development. I think that's fantastic. I'm also getting us involved with another program called Children's Special Services where they get you in touch with everything you need as a special needs parent. Therapy programs, any medical devices he may need, counselling, programs to help with development, etc. I'm trying to establish as many supports as I possibly can.
As for Skyler he is being as adorable as ever. Smiling and jabbering away at me and C and N. She thinks he is the coolest thing since Mickey Mouse. Today N spent a good ten minutes talking to Sky and telling me "Look at him! Look at him, he's smiling, he's making funny faces" As she's saying this I'm thinking ahh you have no idea, I could stare at him all day long.
Wednesday, March 11, 2009
Sometimes It's Hard..
Today was one of those days. Somehow things just got overwhelming for C and me. I got a call from OT, (occupational therapy) they saw Skyler in the hospital and now they've scheduled his follow up appointment for April 1. It's at the same hospital where he was in the NICU for two months. When I told C he basically blew up. He said he was tired of everything, tired of the endless appointments, he hates that we have to pay for all the drugs to keep our baby alive. How it's unfair that our baby needs drugs to live. I don't want it to sound like we're ungrateful. We have a live baby, he is perfect in every way, but at the same time he is just not like all the other "normal" babies.
Honestly, this is kind of tough sometimes. I am over the moon happy with my baby, I love him more than life itself and I will do anything I have to do to provide for him and keep him happy, healthy and loved. But sometimes I do feel worn out with the worry, the endless appointments and administering all the meds. Yet at the same time I know full well so many people have it far worse than us, babies with problems far worse than Skyler's, and people whose babies don't make it. But I can't just sweep it under the rug and pretend like this is easy, yes he is alive and he is "relatively" normal, but he currently has 5 specialists to see, a cardiologist, a neurologist, an endocrinologist, an occupational therapist and an opthamologist. He has hormones that need to be administered, and he has physical differences that you can't see in pictures. I'm not comfortable telling you what they are, but hopefully one of the meds will help make it "normal". Sometimes C and I get overwhelmed with it all. There is so much to keep track of and so much to worry about.
And it's such a rare condition, I feel somewhat alone in this. It's just me and C. I've been searching online for anyone who talks about hypopituitary issues, but so far nothing. It seems the focus of my blog has shifted. This morning I caught Skyler looking at Sophie's picture, I told him about his sister.. But it seems I haven't been discussing miscarriage/pregnancy loss much anymore. Now that I have Skyler here, it's all about him, and his medical/hormone dependancy. I understand people not following this blog anymore. Of course you are more than welcome to follow along and watch Skyler grow. If anyone knows of any parents with special needs children or hypopituitary issues, please point them in my direction or send me to them.
Honestly, this is kind of tough sometimes. I am over the moon happy with my baby, I love him more than life itself and I will do anything I have to do to provide for him and keep him happy, healthy and loved. But sometimes I do feel worn out with the worry, the endless appointments and administering all the meds. Yet at the same time I know full well so many people have it far worse than us, babies with problems far worse than Skyler's, and people whose babies don't make it. But I can't just sweep it under the rug and pretend like this is easy, yes he is alive and he is "relatively" normal, but he currently has 5 specialists to see, a cardiologist, a neurologist, an endocrinologist, an occupational therapist and an opthamologist. He has hormones that need to be administered, and he has physical differences that you can't see in pictures. I'm not comfortable telling you what they are, but hopefully one of the meds will help make it "normal". Sometimes C and I get overwhelmed with it all. There is so much to keep track of and so much to worry about.
And it's such a rare condition, I feel somewhat alone in this. It's just me and C. I've been searching online for anyone who talks about hypopituitary issues, but so far nothing. It seems the focus of my blog has shifted. This morning I caught Skyler looking at Sophie's picture, I told him about his sister.. But it seems I haven't been discussing miscarriage/pregnancy loss much anymore. Now that I have Skyler here, it's all about him, and his medical/hormone dependancy. I understand people not following this blog anymore. Of course you are more than welcome to follow along and watch Skyler grow. If anyone knows of any parents with special needs children or hypopituitary issues, please point them in my direction or send me to them.
Tuesday, March 10, 2009
Homeschooling
Skyler had his wellbaby appointment on Monday, he weighs 10 pounds 10 ounces, which is about normal for his uncorrected age. His head size is normal too, but his growth seems to have slowed, he has only grown half an inch. And he has a heart murmur, and he has nystagmus. So we are being referred to both a cardiologist and a neurologist. He also needs his bloodwork done for endocrinology sometime this week. Too bad I didn't ask if she could refer me to someone who will keep me from ripping out my hair with worry. Argh.
I love that our NP reassured us that it sounds benign and he'll probably grow out of it, but she sent referrals to specialists just to make absolutely sure. I didn't have to pull teeth to get him checked out, she didn't treat me like a stupid/crazy parent. She respects us and our son and I love that about her. I couldn't imagine having anyone else taking care of me or our son.
So I mentioned last time that I'd talk about our decision to homeschool. We've reviewed our options and so far there is no other way to do it. There are just too many variables. He is going to need his teachers to know when to give his meds, how much to give, how to administer them and how to document it so that the other teachers and his parents (us) know exactly what time it was given at and how much he received. And it's not as simple as a certain time of day a certain amount. He will have his scheduled pred every morning, but if he needs a stress dose someone will have to be alerted to that fact, decide if he is stressed out and then give him the appropriate amount of meds and document it because he can't have another dose for 12 hours after the stress dose.
Which means he would have to have someone with him the entire time he is at school, in case he falls at recess or gets hurt in gym class or has a fit in math class, or catches a cold and starts sneezing in english class. Which means he'd likely end up in a special ed class. Assuming he is neurotypical this is not something I want for him. First of all I don't trust anyone else with his meds. Secondly his needs are not as severe as many others and I don't think it's fair to the other kids or him to have to have special ed resources when we could easily manage to teach him at home until he is old enough to manage his own meds.. Especially if he ends up being in lifeskills classes or something and gets left behind. Any thoughts on this? Maybe I'm just crazy
I love that our NP reassured us that it sounds benign and he'll probably grow out of it, but she sent referrals to specialists just to make absolutely sure. I didn't have to pull teeth to get him checked out, she didn't treat me like a stupid/crazy parent. She respects us and our son and I love that about her. I couldn't imagine having anyone else taking care of me or our son.
So I mentioned last time that I'd talk about our decision to homeschool. We've reviewed our options and so far there is no other way to do it. There are just too many variables. He is going to need his teachers to know when to give his meds, how much to give, how to administer them and how to document it so that the other teachers and his parents (us) know exactly what time it was given at and how much he received. And it's not as simple as a certain time of day a certain amount. He will have his scheduled pred every morning, but if he needs a stress dose someone will have to be alerted to that fact, decide if he is stressed out and then give him the appropriate amount of meds and document it because he can't have another dose for 12 hours after the stress dose.
Which means he would have to have someone with him the entire time he is at school, in case he falls at recess or gets hurt in gym class or has a fit in math class, or catches a cold and starts sneezing in english class. Which means he'd likely end up in a special ed class. Assuming he is neurotypical this is not something I want for him. First of all I don't trust anyone else with his meds. Secondly his needs are not as severe as many others and I don't think it's fair to the other kids or him to have to have special ed resources when we could easily manage to teach him at home until he is old enough to manage his own meds.. Especially if he ends up being in lifeskills classes or something and gets left behind. Any thoughts on this? Maybe I'm just crazy
Friday, March 6, 2009
Your Request For Sleep Has Been Denied
Wow it's been almost an entire week since my last post and I have about a million and one things to write about. Let's see, on Sunday night I went to take a nap around 8pm. 9pm C comes into the bedroom to wake me, there is a very loud bell ringing I tell him to "Cut it out!!" because I am very groggy and tired and would he just let me sleep for a few minutes already jeez, but then he says "You have to get up, the fire alarm is ringing" Well shit. I leap out of bed, (and I sleep in my underwear..) search around frantically in the dark for some clothes, all the while the bell is going off in our apartment (Think the loud fire bell they have in the hallways at school). Almost forget to grab my jacket and keys as we race out the door with the baby. And I completely forgot my glasses and am pretty much legally blind without them. We get outside, and walk around to the front of the building with the baby zipped into C's jacket. In front there are most of the tenants gathered in the foyer, including the caretaker's wife sans the actual caretaker who is apparently not home tonight. The caretakers are both new to the building and so she has no idea what to do. The alarm in our building is only local, but we can't find any smoke or fire so no one has called 911. Instead we're all huddling into the foyer wondering what to do. Finally C says "Did you check the alarm system panel in the second room laundry floor?" I have no idea how he knew it was there since we live on the first floor. Anyway the caretaker lady had no clue it was there at all, so he went up there with her and figured out how to work it and turned the alarm off. He's handy with that kind of thing. We head back in, I feed the baby and can't fall asleep for the rest of the night.
What else? We got our $4000 tax return and paid a bunch of credit card debt off, and bought ourselves a new tv and entertainment system. That was pretty cool. We also got a wii. I used to have one when I lived with my ex, but he of course took it, and I was so happy to just get out of the relationship that I didn't care that I had left it behind.
We're starting to worry about Skyler's visual development. He is almost 2 months adjusted and still has quite a bit of trouble focusing. That is when he tries, which is rare. It's common for preemies to take longer to focus, but still. I am glad the NP has set us up with the pediatric opthamologist specialist in the city. Unfortunately he's the only one in the city and the wait is 6 months. If he needs glasses or whatever it won't be a big deal, C and I both have astigmatism and I can't see past a foot and a half without my glasses. I am just worried that if he doesn't get it corrected soon he will have other development issues.
The other night baby and I woke up at 4am, and I turned on Treehouse TV, In The Night Garden was on, which is a creepy weird bedtime show for babies made by the people who made Teletubbies. He was laying next to me on the couch and started fussing a little, not quite crying but he was annoyed or something. So I sat him up and what do you know? He started watching the tv. Complete with cooing, giggling and raising his arms with excitement when Igglepiggle and Upsy Daisy started dancing or making sounds. I looked at my kid in complete awe and said "So you won't focus on my face, but you'll watch In The Night Garden.. Alright then." As long as he is focusing on something I guess.
The next day he started focusing on our faces more, and on my lunch break C was playing with him and talking all high-pitched, and Sky looked right into his eyes and started smiling! He's been smiling a lot since that first one, I'm starting to discover his likes and dislikes. I think the smiling thing makes everything so much more fun. For instance I now know he loves his stuffed bird with the bell in it, and he loves when I tickle his nose with my nose. He smiles at me when he is happy and we lay together on the couch staring at each other. His eyes still wander, but he seems to be focusing more.
I have so much more to say, but I have been working on this post for days now and so I think it's time to wrap it up and just start a new one when I get a free minute. Maybe next time I'll talk about our decision to homeschool..
What else? We got our $4000 tax return and paid a bunch of credit card debt off, and bought ourselves a new tv and entertainment system. That was pretty cool. We also got a wii. I used to have one when I lived with my ex, but he of course took it, and I was so happy to just get out of the relationship that I didn't care that I had left it behind.
We're starting to worry about Skyler's visual development. He is almost 2 months adjusted and still has quite a bit of trouble focusing. That is when he tries, which is rare. It's common for preemies to take longer to focus, but still. I am glad the NP has set us up with the pediatric opthamologist specialist in the city. Unfortunately he's the only one in the city and the wait is 6 months. If he needs glasses or whatever it won't be a big deal, C and I both have astigmatism and I can't see past a foot and a half without my glasses. I am just worried that if he doesn't get it corrected soon he will have other development issues.
The other night baby and I woke up at 4am, and I turned on Treehouse TV, In The Night Garden was on, which is a creepy weird bedtime show for babies made by the people who made Teletubbies. He was laying next to me on the couch and started fussing a little, not quite crying but he was annoyed or something. So I sat him up and what do you know? He started watching the tv. Complete with cooing, giggling and raising his arms with excitement when Igglepiggle and Upsy Daisy started dancing or making sounds. I looked at my kid in complete awe and said "So you won't focus on my face, but you'll watch In The Night Garden.. Alright then." As long as he is focusing on something I guess.
The next day he started focusing on our faces more, and on my lunch break C was playing with him and talking all high-pitched, and Sky looked right into his eyes and started smiling! He's been smiling a lot since that first one, I'm starting to discover his likes and dislikes. I think the smiling thing makes everything so much more fun. For instance I now know he loves his stuffed bird with the bell in it, and he loves when I tickle his nose with my nose. He smiles at me when he is happy and we lay together on the couch staring at each other. His eyes still wander, but he seems to be focusing more.
I have so much more to say, but I have been working on this post for days now and so I think it's time to wrap it up and just start a new one when I get a free minute. Maybe next time I'll talk about our decision to homeschool..
Sunday, March 1, 2009
Littlest Big Boy
Friday was great, I loved my Mommy & Me workshop. There are four parts, this was the first one entitled The Mommy Myth. We talked about how the media and society shape our view of ourselves as mothers. How we feel guilty if we're not the "perfect" mom or the "perfect" wife. We talked about how we're encouraged to rid ourselves of all evidence of motherhood on our bodies (stretch marks, extra weight) and how we're inundated with pictures of slim celebrities who lost the baby weight in weeks. Needless to say it was eye opening and very interesting.
After the class we got cable tv installed, which we haven't had since last spring before we moved. Shortly after that was finished the visitor from the Welcome Wagon came and brought a whole bunch of stuff for me and baby. Certificates for free haircuts, free oil change, $10 gift certificate for a local baby/kid consignment shop, etc. So Saturday I packed up a whole bunch of girl clothes that I've decided I won't be using even if I have a girl, and I brought it in for trade at the consignment shop. I got $22 worth of free baby clothes for Skyler. It was awesome. I ended up spending $2 and getting 5 pairs of pants and a onesie. Most of it is Baby Gap and Carters and Mexx and Roots and Children's Place. And it's all basically new. I think this stuff may have been worn once. Really babies grow out of their clothes so fast I can't justify spending $30 on one outfit at some fancy store in the mall when I can spend the same at the consignment store and get like 7 things. Unless of course it is like some super adorable outfit that I just have to have for professional pictures of him or something.
Anyway it's been a pretty good weekend. And I'll leave you with a picture of world's most adorable little big boy.
Subscribe to:
Posts (Atom)