It's been a while since I had the time to sit down to write a post on here. little Peeper still feels that he needs to eat every 2 hours or so and, sometimes it's even more often than that. But at least he has days when he'll sleep a little bit more and when he'll even allow me to put him down for a nap in the cradle or straller.
For the most part however, he just wants me to nurse him and, he wakes up just as soon as I move just a little bit. Now if he realises that he's dropped the nipple at those times all hell breaks lose. He'll cry if I don't nurse him, and he'll cry if I do, probably cause he's been eating too much and his little tummy hurts.
Going for walks use to be great for getting him to sleep, but now he just wants me to carry him even when we're out dores.
Everybody's trying to tell me that a pacifier would solve our problem, but he doesn't want one. He sucked his thumb from time to time during the first couple of weeks, but it doesn't happen very often now.
I've been trying to help him out by holding the pacifier in his mouth for a while, since I figure it takes a different kind of technique than when he suckles. On a few occasions it has actually worked, but then it's like he realises what's going on and he won't take it again after that. He'll either just keep spitting it out, or he'll get mad. Well and when he gets mad he Screams with a capital s, Or lets just capitalize the whole word, he SCREAMS!
It sounds like we're trying to murder him at the least, which pretty much rules out the other advice I've been given to deal with the situation. I can't try to draw it out and make him wait for about 3 hours between meals. I promise you that my neighbours will report me for child abuse if I don't nurse him when he wants me to, cause he just will not stop crying.
I know from the times when we've been forced to wait. Like when T came for a visit, which by the way was a good time in spite of the trials and tribulations of our poor little baby dealing with colich at night. .
I could have done without the hours it took to pick him up at the station however. That definitely falls under the category "trials and tribulations" as well.
Peeper woke up hungry as soon as we got to the station and it wouldn't have been a problem, but the train was of course late. I figured we could just go have a little something at Expresso house and I could nurse him in there, but they close at 8 PM, so we had to get up and leave before he was done eating. T's train got there right around that time, but we had just missed the bus, so we had to stand around for about 20 minutes and wait for the next one. Then it's another 20 minutes to get home.
I always feel like people are staring extra at me in those situations too, since I'm blind you know and, in fact I'm sure they do. I hate it! I've almost given up on going places for that reason, cause now that Peeper cries so much, he gives them even more reason to look at me and wonder what that blind woman's doing with a baby.
I fear I'm about to just lose it the next time some well meaning, exceedingly stupid individual walks up to Alex and tells him that they're so impressed with him now that he's obviously taking care of both his poor, blind parents and a baby.
When it doesn't make me wanna tell them something exceptionally rude, which i admit is most of the time, It always makes me wanna tell them that they're exactly right. He's such a miracle kid really! You know he use to push himself around in the straller, change his own dypers, dress and, feed himself when he was little. Hell when he was 3 weeks old he was already leading his poor helpless blind mother around. Seriously; who do they figure took care of him?! It's doubtful that they'd pick up on the irony though...
Anyway, I haven't slept much lately, as I'm sure you can tell. After I got the carrying shawl things got a little bit better for a while. They didn't have the one they recommended at the nicu, but Aldoria Bambu Soft works just as well as that one. I even got a chance to work a little bit on the new poker scripts and write a couple of artickles. He was content when he could be that close to me all the time. I can nurse him without taking it off and, we can be skin to skin. We can still do that, but he's getting so big now that I can't really be on the computer when I have him in the shawl anymore. We just can't sit confortably. It's still great for carrying him though.
We even got a chance to go to the Helsingborg festival and, Even though there were indians, mexicans, and sweeds for that matter, playing live music along the way, Not to mention thousands of people talking everywhere, he just slept through it all.
we were walking around down town looking at things for quite a while and, we even stopped to buy some things, but he didn't even stirr. that is, until he got hungry... Unfortunately, there were so many people everywhere, that I couldn't find a place to sit down and feed him, so we had to wait until we got home . He cried all the way and I swear I could feel my hair turning more and more grey for every second he had to wait. No more festibals for us for a while...
I know that this is partually my own fault. I should probably have been more persistent when it comes to making him sleep on his own. But during those first weeks in the hospital and, later when he had that terible cold, I just wanted to give him as much skin to skin time as possible, so that he'd want to stay with us. I felt as if I would die if he did, and I just wanted to hold him and squeeze him and never let him go.
I can spend hours admiring him, being mesmerized by his perfection. His velvety soft hair, which feels almost like a peach. His perfect little ears. His little baby feet which have a skin so soft i just wanna kiss them. They tell me he has beautiful dark blue eyes. I wish I could see them.
There was never any immediat danger of him dying, but I was just so afraid to lose him. I still am. It makes me cry sometimes. I can't help it. Having him makes me so happy and, I'm so scared that it's gonna be a trick of some kind, though by who I'm not quite sure. But sometimes it feels like I'm just waiting for something to happen that'll take him away from me.
All tests have turned out well in the end though.
He failed the third hearing test as well, so the audiologist had to give him one where she put little electrods on his head to measure the responses from his brain when she played sounds in he's ears. It proved what I knew all along though; there's nothing wrong with his hearing. Though I'll admit that there were short periods when I was freaking out, cause wouldn't it be the hight of irony for the blind parents to have a def son. And how would we communicate... There are ways of course, but it's a life I'm glad he doesn't have to face.
The most important test, well or check-up I guess, did however take place at the eye department and, there's no signs of retinoblastoma, the eyecancer that made me blind.
There's not suppose to be any heridity in my case, since the gene mutation that causes it doesn't run in my family, but I understand that the risk of passing it on is higher if one's had the cancer in both eyes. In families where several members has had the retinoblastoma there's a 50 % chance of the children carrying the mutation that could develop the tumors in the retina.
I had some genetic testing done when I was 12, where blood samples were sent to the U.S, and, the doctor said that I would not have to worry about my children getting it, but later another doctor told me that there was no such test that could say with any certainty.
The children who have the mutation generally develop the cancer before the age of 6, but they're most commonly diagnosed between 1 and 2 years old. As long as they catch it early, almost all can be cured, but if the cancer gets a chance it can spread to the brain, bones and lungs.
I'm not taking any chances, so I'm having them check little Peeper every year until he's 8 years old, just like they did with Alex. Just to be on the safe side...
To end this super long post on a funny note:
Little Peeper even allowed T to hold him for a while. Things were going so well in fact that I figured I could leave them for a minute and use the restroom. It dodn't take but 20 seconds before I heard a howl from T, followed by another one from little Peeper. The little one had find the perfect time to blow up his diaper. I'm still not sure who was most horrified after that insident, but I suspect that Peeper may have second thoughts next time T wants to hold him. That is, if he can be persuaded to do so...
No comments:
Post a Comment