Tuesday, May 26, 2009
Yesterday was Skyler's appointment with endocrinology. It went very well. I think his endocrinologist was surprised by just how much I know and how I was able to discuss everything using all the medical terminology and keep up with him without him having to dumb anything down. He said the things we already knew basically, no testosterone during the last test, he's still growing on his own without growth hormone, chances are though that once he's a bit older he will need the growth hormone replacement. His hydrocortisone and thyroxine levels are fine, so we'll keep those medications at the same dosages. Still can't find his scan (MRI) from the hospital he was born at, he'll be sending a paper looking for that.
While we were in the waiting room C and I were looking at the brochures for MedicAlert. It reminded us that we need to get Skyler a bracelet, and when I looked at the list of "reasons to get a medicalert bracelet" I realized I needed one as well. If I were in an accident and became unconscious or something and a doctor ordered an MRI my arm would burn up from the inside and probably explode. I have two metal braces in my arm on either side of my humerus and interlocking screws all the way through it. So I ordered Skyler and myself each a medical bracelet. I didn't go through MedicAlert because it's $40 a year for one bracelet. I used Universal Medical ID because it was only $45 for mine and his combined and you don't have to pay for it every year, just once. I made sure they both matched too so Skyler's and mommy's are alike.
On Friday his CNIB OT came over. It was a lovely visit as usual. I adore her so much, she just has such a positive attitude and a vibrant personality it rubs off on you whenever she's near. I showed her how Skyler is tracking his black and white cards, she was very impressed and took lots of notes. I asked her if she knew of any good books for teaching blind children and she said that the CNIB published a book (that she wrote a chapter in) and that it's actually more for the people who work with the kids than the parents. But she said that with my background and schooling that I'd definitely get a lot out of it. She said it's a $50 book but she's going to see if she can track down a copy for me. I'm extremely excited.
My family is well my family. My dad called my mom and told her to leave me out of it. He called me and apologized for everything and asked how me and C and Sky-guy were doing. He said "I don't want you worrying about this stuff with me and your mom. You have your own family to take care of, and that's what's important. You have enough to deal with, without all of this added nonsense." So obviously I'm still involved somewhat, and still hearing about it, but he gets it and that's what matters. He doesn't bring it up with me, and just wants to know how his little "Sky-Guy" is doing when he calls. So I'm hanging in there, not doing too bad.
I'm just excited right now, the sun is finally shining and I've discovered a new craft thing that I'm obsessed with. (It's always something with me..) Scrapbooking! Yeah I know everyone is doing it. I was reluctant at first, thinking what's so exciting about gluing pictures onto coloured paper.. But my love of smiley Skyler pics and sparkly stickers won out and now I'm one of those people. Oh and I can't wait for Sunday! Why? Because "today is the day the day the teddy bears have their picnic!" I'm not sure if the Teddy Bear's Picnic is just a manitoba thing or not. Anyway it's tons of fun and I used to go every year as a kid. Everyone brings their teddy bear and they have a "B*A*S*H* tent" where doctors and nurses fix your teddy bears booboos and perform minor surgeries or put on bandaids etc. There's live music for the kiddies and face painting and snacks and crafts and games. Come to think of it, it probably is a Manitoba thing since all the proceeds go directly to the Children's Hospital.
Wow I have rambled on longer than I thought, I've got to be getting ready for work right away. I'm hoping to bring out a picture of N, and bring some stickers and paper and let her try out this scrapbooking thing for herself.
Thursday, May 21, 2009
Oooh C just put on 21 Jumpstreet.. What was I saying?? Right, family blows. So I get off the phone with her and try to go back to my school work but now I can't concentrate on anything at all. So today I still have homework to do before my class tonight because I couldn't get back into the right mindset to finish it yesterday. Haha so much for being overwhelmed. I'm not even worried about our bills now. I'm more worried about my entire family being at war with each other. As much as I'd love to distance myself (remove myself in fact) from the whole situation I can't. Unfortunately I want my parents to be a part of my son's life, and that means talking to them. And talking to them means hearing about it. And hearing about it means being involved in it. *sigh*
So after work yesterday I took a nice long nap. I was exhausted and drained. And then at night Skyler decided he couldn't sleep so, I literally got about 5 minutes of sleep last night. It's a good thing I took that nap. I had wanted to go to the gym this morning, but I'm too tired to do much of anything now. I'd like to go back to sleep but I have to go to work in a couple of hours and I still have homework to do, and then I have class. I had intended to write a post about Skyler, but I think it will have to wait until I get some time.. I hope you all are faring better than I am at the moment.
As I keep telling myself: This too shall pass.
Wednesday, May 20, 2009
And the weather here. I tell you it feels like it's prophesizing doom. It is still not anywhere near anything resembling the beginning of summer! It's barely even spring. I keep thinking it's fortelling the end of the world. I think it's a big part of what's overwhelming me. I can't deal with this gray, rainy, snowy weather anymore. It's ridiculous. I should be outside wearing shorts and a t-shirt enjoying picnics and long walks, not bundling up in a cozy sweater crocheting a thick wool blanket in front of the tv. Baking things just to warm up the apartment. I'm losing my mind in here. Last night we had frost, just to ensure that anything anyone had the nerve to plant is now dead. No May flowers for you losers in Manitoba, enjoy the eternal winter.
I swear I feel better today than I did yesterday. That's saying a lot. Heh. Anyway, Skyler is doing well and that's all that matters. Yesterday I made him a little book with our home visitor. I love it very much, it was a great idea, and the girl who comes to visit us brought the textured fabrics so we could do a texture book for him because of his lack of vision. So I cut all the shapes out of the different textures, and since I don't know braille yet I just wrote each shape out in ball point pen on the back of the card pushing it into the carpet so it would be upraised on the front. This way he can feel the words, even if he can't read it, at least it will get his fingers used to feeling bumpy paper. It's a very cute book, and I'll take pictures of it later.
But for now, I am off to work. Crossing my fingers that N takes a nice long nap today so I can finish my homework..
Sunday, May 17, 2009
And C's sister in the hospital. I'm pissed about it. She invited us to meet her for lunch last week, and played with Skyler and then after she hands him back to us, she says "I'm going to the doctor now, because I've had a fever for 3 days." Uh.. We had told his family the rules, if you're sick, stay away from our baby, he's small and premature and susceptible to stuff. So she went to the doctor and apparently has mono, and they want us to get Skyler tested for it. And today C had to take her to the hospital because her throat is all closed up and she can't eat or drink anything. Lovely. I'm very sorry she's sick, really I am, I'm worried about her too. BUT hello could you not have respected our wishes and maybe told us you were sick before you started playing with our baby?? His family makes me want to rip out all my hair and eat it. UGH. If my baby is sick... I'm going to be one angry mama bear.
So yes in short, I'm clumsy, accident prone, bad luck follows me everywhere, and the weather this weekend blows. Snowed yesterday, +20 today.
ETA: C brought the laptop back from the dead yay!
Saturday, May 16, 2009
Friday, May 15, 2009
And now for the exciting part, he's eating solids! YAY! Turns out he just didn't like the taste of the baby rice cereal and that's part of the reason why he's been spitting it out. Last night I went out for a bit and the baby got hungry so C decided to try some butternut squash baby food, Skyler ate it quite happily. This morning I mixed together some rice cereal and some peaches and he ate quite a bit more than I expected he would, I was so proud. Then afterwards I topped him up with some breastmilk.
New things in my life? I don't know, I can't seem to think hehe. Yesterday N was putting me down for a nap, and her new thing is she has to read a bedtime story. So her bedtime story for me was "Once upon a time there was a beeeeautiful princess named Britt-Britt who lived with her mommy and daddy. The end. Now go to sleep!" and she tilted my head to the side. Haha so cute. And she's gotten better with Skyler, she's no longer trying to "share" his toys by taking them away. Now she grabs his toys out of the bag and brings them to Skyler and puts them in his hands. "Baby Skyler's toys! He's playing with it Britt-Britt, look" I can't get over how amazing her language abilities are.
Today C and I were discussing one of Skyler's drugs that was supposed to be couriered to us (twice) but wasn't. We called the pharmacy and told them we'd just go get it since they can't seem to send it over here properly. It's an injectible one, and on the 25th we have the appt with his endocrinologists to get his testosterone, which is another injectible. Then we remembered that he'll have to have injections every day of his life once he starts growth hormone replacement. He'll have growth hormone 6 days of the week and testosterone on the 7th. He'll also need his thyroxine and prednisone every day(twice a day for the pred).
Seems that in getting caught up in everyday life and having his drugs as part of our routine we had forgotten about him being different. I find that I often do. It isn't until I say something outloud to someone else that I remember that he is not like every other little baby and we are not like every other parent. We do have a lot of extra stuff to remember, and in getting caught up in living I forget that we're not the same as other parents. Sometimes watching other mommies and babies interacts reminds me that we're different. Sometimes seeing a baby look lovingly at their mommy reminds me. But I look down at him, his eyes wandering and his huge smile in response to whatever I'm saying and I feel like I am the lucky one.
Thursday, May 14, 2009
C wants him to sleep in his crib now instead of with us. Which will make things a bit harder on me. But if Sky can sleep through the night (fingers crossed again) then maybe it won't be so bad. I'm going to take this whole schedule thing slow and not rush into things. For the first while I'll probably only leave him with daddy in the afternoons or something. And we're working on the eating cereal thing. He's still sort of pushing most of it out with his tongue, but he's getting better, and I'm hoping if we keep trying he'll figure it out.
Anyway that's all I have time to write right now. Hope you all are well.
Tuesday, May 12, 2009
Skyler after a diaper change in his crib (his overalls are still undone cause I just changed him)
Monday, May 11, 2009
Sunday, May 10, 2009
I spent about an hour thinking back to when I found out I was pregnant, how the pregnancy went, giving birth to him, the NICU, basically reflecting on the past year. There's just so much. I can't believe how far we've come. I even went back and read some of my blog posts from last year. So much has changed. To all of you other mommies out there I hope you have a good day.
Saturday, May 9, 2009
Skyler seems to think he can crawl, and stand up by himself. I had him sitting on my lap this morning and all of a sudden he stands up and launches himself over onto my other leg and my arm and starts climbing me. I sit him back down on my leg and he stands up again and just stands there leaning on me for a while.
I'm ovulating. I can tell because I woke up the other day wanting to crochet like immediately. And I started crying twice in the same day over silly things. And chocolate tasted way too sweet. It's odd how I can tell these things. It was either the very last day in April or very early in May last year that I got pregnant with Skyler. So it's been a year since he was conceived. It was Mother's Day last year when I got my first positive pregnancy test with him. So it's kind of a special day to me in another way.
I started making a blanket for Skyler yesterday and then realized I have never actually made myself a blanket. Out of the numerous ones I've made they've all been for babies my own or others. So now I'm tempted to go back to Wal-Mart and pick up a ball of something pretty possibly a girly colour (because every other crocheted blanket in this place is blue, white, green or some combination of these colours.) and make myself something for a change. I know it's May, but with this weather, yes I am thinking about making nice warm blankets. /Sigh.
Wednesday, May 6, 2009
Skyler watching Little Einsteins in his exersaucer
Watching Little Einsteins from the couch, complete with monkey and blankie
I swear he's mine and they didn't switch him at birth, they had numbered bracelets you double check and everything! (I hadn't realized just how much he looks like C until I saw this pic)
Oh and despite the junk food pyjamas I swear I never feed any of those things to my baby. Plus it should be noted I was wearing pj pants with candies on them at the time, they just aren't visible in the picture. Which sucks cause we totally had a theme going on.
Monday, May 4, 2009
Today I'm going to share a secret with you. This is a post I've needed to write since my son was born, but something I swore to myself I wouldn't share with anyone until Skyler was home safe and sound.
When I went into labour at 31 weeks, I was suprisingly calm. C was excited, babbling on about meeting the baby, talking about what we were going to name him. Making plans for this and that. I kept saying "Let's just not worry about that right now." He seemed so optimistic, and all that was running through my head was "It's too early, don't get attached." I basically detached myself from the whole thing, just in case. I was extremely calm throughout the whole labour. I did not once scream, yell or swear. I kept repeating over in my mind "my body and my baby are healthy and strong, my body and my baby know exactly what to do." all I could think about was getting him out of me as safely as possible. Anything beyond that I didn't want to focus on.
I didn't expect them to show him to me when he was born. I was sure they would just take him and rush him out of the room as quickly as possible. But they held him up, said "It's a boy" and put him on my stomach for a moment before whisking him off. He had trouble breathing of course. He was not ready to come out yet. The thing was, I was pretty sure he wasn't going to make it. I was terrified he wasn't going to live. And it didn't go away after he was born either.
Everyday I'd down the hall to his bed in the NICU, and everyday I would pass by a cupboard labelled "Bereavement kits & Bereavement boxes". I would worry that one day they would hand me one of those and my heart would break in two. One day I heard the nurses talking about someone else. Snippets of conversation "Get me a bereavement kit. She's freaking out. I have to get back to her." The nurse who said it sounded nonchalent, uncaring. Maybe she had to be detached from her job to deal with it, I don't know. But it sounded like everyday conversation, not like someone had lost a baby. If anything she seemed almost annoyed. I cried that day, well more than usual.
The NICU was hard. It killed me when they said my baby was "a puzzle" and "we don't know what's wrong with him. He should have gone home by now" among other things. I know now that the reason he kept desatting was that he had no cortisol and no way to deal with his stress. But to someone who is afraid their baby is never coming home, it was terrifying. Some days I didn't feel like his mommy. Some of the nurses could be cruel, probably not on purpose but they want to get things done and don't always make allowances for new parents to just be new parents.
I got through it, and Skyler did of course, he is my little warrior. He is strong, much stronger than I am. And I'm grateful for the experience as hated as it was, as much as I wouldn't wish it on an enemy. It taught me to appreciate my baby. That a life so small and so precious is not something to take for granted.
Saturday, May 2, 2009
I'm now covered in food colouring of various colours and sugar and flour, and feeling quite satisfied. We're also drinking switchel which is suprisingly good (it's like lemonade without any lemons, it uses ginger instead.) and very thirst quenching. So I hope you're all having a great time enjoying the start of summer!
Oh and if you're interested in any of the recipes let me know in the comments and I'll post them.
Friday, May 1, 2009
And there you have it internets. Today I am wearing my fancy pants. Let's hope they bring good luck at the cardiologist appointment. Not that luck has anything to do with it. I'll update afterwards.
UPDATE!!: Skyler's heart is absolutely perfect!! Yay fancy pants!!