After all the drama at the weekend, I'd like to present to you some more... normal... stuff.
Owen woke up at 4.45am to cry, throw up, and generally annoy both himself and us. All the commotion woke up our cat, Bob, who decided that this was the perfect time to bring us a 'present'. As we settled back down to get another few minutes of kip, Bob was out hunting. And catching. And mauling. At about 5am, I was just nodding off again when the rather alarming sound of a bird twittering and tweeting very close to me brought me to my senses. Now, we had an amazing thunderstorm last night, so my first thought was that we had a hole in our roof and a bird had somehow managed to get inside the attic and couldn't find a way out again. Anyway, it stopped shortly after and as there was no water dripping on to the bed, I figured I'd just deal with it when I got up.
The alarm went off at 5.30am and Mike got up. Now, yesterday he had some minor surgery on his toe (more on that later), so he was kinda hobbling about and knocking shit over in an attempt to re-dress the bandage. So he turned on the light to see all the shit he'd knocked over. And saw instead, horror of horrors, that Bob had not only brought a live bird in to our home, but that he had chosen the spot just outside our bedroom door to play with it and kill it. There was blood and feathers and dead bird carnage EVERYWHERE. Bob, meanwhile, was nowhere to be found. He was obviously very pleased with his offering and had gone off to bother some more of Wisconsin's wildlife, and we were so mad at him that we closed his cat flap and locked him outside for a bit.
That poor, poor birdie. It's Bob's fourth present snce we've allowed him outside: three birds and a baby bunny rabbit. The rabbit was very sad, but at least it was a swift, clean kill. This latest one was obviously very distressing for the birdie because I could hear all its twittering as it died. I have no idea if, had I gone to investigate the noise, I could have saved the birdie, but I think it would have been even worse. Bob would have probably released it, and then we would have had a flying, twittering bird in our house with severe injuries. Poor little birdie.
Stupid cat.
So, Mike's toe surgery was to FINALLY fix a problem he's had for eighteen months. Christmas 2008 he went out in the snow to get something from the car, and decided flip flops were the sensible footwear of choice. As the snow was coming down thick and fast, he ran back up the steps to our (then) flat, and slipped on some ice, slamming his big toe into heavy-duty concrete. It's never been right since, and all attempts to help it heal haven't worked. Until yesterday he had a pretty serious ingrowing toenail, and an infected site that oozed pus every day. Well, the doctor whipped that sucker out and GOUGED OUT THE OVERGROWN FLESH that was trying to compensate for a poorly toenail, so that Mike is now left with two-thirds of a big toenail, and two open wounds on each side of the nail. He's pretty miserable and hobbling around with one toe stuck straight up in the air. Also, he can't wear open-toed shoes to work (oh, that he were a woman!), so he's planning some covert operation where he slides his shoes off under his desk and goes barefoot all day. Lol. We'll see how well that goes...
I've also joined a gym where childcare is only $1, but the free weights instructor completely kicked my arse today and I can't be bothered to type any more. Besides, there's still some blood on the carpet upstairs and it's not like I can ask Bob to clean it up.
Tina.
Showing posts with label Surgery. Show all posts
Showing posts with label Surgery. Show all posts
Tuesday, June 22, 2010
Friday, May 28, 2010
Bigger blog
Since Owen's birthday on May 17th, things have been a bit of a whirlwind. He has had a birthday party, some professional photos taken, surgery and a stay in hospital overnight, a change in formula, and a pretty nasty stomach bug.
It's a shame I'm not keen on sharing photos of my son on this annoymous blog, otherwise I'd load up some from his awesome birthday party. It was brilliant. Every child ought to have a first birthday just like it. Mike's family came out to visit for the occasion and I invited about twenty other friends and their small children too. We had a barbeque using our very American gas-powered outdoor grill, which fires up in about three minutes and cooks meat and veggies perfectly - as long as Mike is watching it. We also had a friend make some cheesecakes to use as birthday cakes. Owen can't manage completely solid food yet, so some creamy, delicious goodness seemed like a nice halfway point between proper sponge cake and liquid baby food. It meant we could stick a candle in it too, which for some reason was very important to me. Owen's guests were extremely generous with presents and he received some incredible clothes and toys. Every single thing was obviously thought-about too, because friends of mine know how much I can't stand gendered toys, and that Owen requires clothes that don't interfere with his tube feedings. He received very gender-neutral toys and clothes, and there was nothing I thought we'd have to put away for a bit until he's able to use it. I was also very pleased that people listened to my (polite) request that he be given toys to help his development. Not every toy aimed at one-year-olds is appropriate for my little boy, but there are items out there which will kick-start a new stage in his growth - such as an adorable walking device that babies can either sit on or push in front of them, that we have named Lionel the Lion. It roars. So does Owen.
On his actual birthday, which was a Monday, I took Little O to get some professional photos taken. Out here it is perfectly normal to get photos done ALL THE LIVE LONG DAY. I have friends who took professional shots every month for the first year of their son's life, and others who don't let a national holiday pass without marching in to a photo studio: Easter, Christmas, Valentine's Day; their daughter has a portrait for all of 'em. I, however, prefer to be a cheap-ass mother, and felt that some nice photographs to commemorate the first year in my son's extremely challenging life were more than appropriate. Owen had other plans, of course, and didn't smile for the camera for most of the session. Of the thirty-or-so shots the photographer took, only four or five were nice enough to use. I ordered some for home and family, but it's not something I plan on doing every year. But this year was special.
On the Wednesday of Birthday Week, Owen had surgery to repair his cleft palate and take off that fucking ugly ear tag he's had since he was born. He was a complete trooper during and after his operation, and my mouth fails me when I try to describe how brave and strong he is. His fourth operation in a year, and he's such a superstar. My heart just swells with pride at the strength of his character, and I tell him that every day. He has to wear these ridiculous arm restraints for two weeks so he doesn't suck on his fingers and pop open his stitches - yuk. It's incredibly hot over here at the moment (yesterday it was 82F/28C) and those restraints stink like a son of a bitch with Owen's sweat. Thankfully we have two pairs and I've been able to wash them, but they're still not nice for him to wear in the heat and I haven't been particularly diligent about him wearing them when he's fussy. At the moment he has a horrible stomach bug, and it seems cruel to deny him the comfort of sucking on his fingers or thumb when he's feeling crappy. I've been watching him to make sure he doesn't get too aggressive and potentially harm the surgical site, and so far, so good.
On Monday of this week I took him up to the GI clinic to see if we could change his formula. He's been on Neocate since he was born, which is a hypoallergenic, amino-acid based formula suitable for children who just won't tolerate anything else. After Owen passed his allergy study a couple of weeks ago, his doctors have been keen to move him on to something with higher calories and a cheaper price tag. So now he's on something called Pediasure, which is widely available and comes pre-mixed. Hallelujah! Unfortunately, the night we started weaning him on to it, he came down with a stomach bug and temperature, and hasn't been tolerating feeds of any large volumes at all. I'm just hoping it's the bug and not the formula.
I do feel guilty when Owen gets ill, because I take down the amount of food I give him. When he's ill he throws up more, regardless of whether the bug is respitory or gastrointestinal, so it seems cruel to push as much food as I can in to his stomach, only for him to bring it up violently and with great distress. So I tend to ignore our regular schedule (8am, 12pm, 5pm and overnight starting at 8.30pm) and allow him to sleep as much as he wants to. It does mean though that not only does he miss complete feeds, he doesn't even get a full feed when he does eat. It's that ever-present issue of trying to do what's best for him versus what keeps him happy: balancing his nutritional needs with his comfort. He's so unwell at the moment that he's waking up every ten minutes or so at night (don't even get me started on how exhausted I am after the last two nights), and throwing up his overnight feed, which means he's not getting that full amount either. I feel very guilty when he doesn't gain weight during an illness, but I try and remember that if he were a normal child, fed in a normal way, then he'd probably be refusing to eat anyway. This is a similar thing, I guess.
In a couple of weeks I take Owen in to discuss the results of an immunology study he had done. His doctor called me and requested I bring him in, which scares the bejesus outta me. Apparently some of his 'levels' came back too low, which is a strong indicator of an immune deficiency disorder. Those are pretty scary and something which I know next to nothing about. I just hope it's not so bad he eventually requires a bone marrow transplant, or infusions every month. The more stuff I can manage from home, the better.
Owen qualified for Medicaid! Hurrah! Too dull to explain here, but it means that a lot of our financial problems associated with his care will now be handled by the state of Wisconsin. This is fantastic news and I'm just waiting for him number to arrive in the post so I can call all his healthcare providers and tell them to stick their medical bills up their arse. I will relish every single call.
Tina.
It's a shame I'm not keen on sharing photos of my son on this annoymous blog, otherwise I'd load up some from his awesome birthday party. It was brilliant. Every child ought to have a first birthday just like it. Mike's family came out to visit for the occasion and I invited about twenty other friends and their small children too. We had a barbeque using our very American gas-powered outdoor grill, which fires up in about three minutes and cooks meat and veggies perfectly - as long as Mike is watching it. We also had a friend make some cheesecakes to use as birthday cakes. Owen can't manage completely solid food yet, so some creamy, delicious goodness seemed like a nice halfway point between proper sponge cake and liquid baby food. It meant we could stick a candle in it too, which for some reason was very important to me. Owen's guests were extremely generous with presents and he received some incredible clothes and toys. Every single thing was obviously thought-about too, because friends of mine know how much I can't stand gendered toys, and that Owen requires clothes that don't interfere with his tube feedings. He received very gender-neutral toys and clothes, and there was nothing I thought we'd have to put away for a bit until he's able to use it. I was also very pleased that people listened to my (polite) request that he be given toys to help his development. Not every toy aimed at one-year-olds is appropriate for my little boy, but there are items out there which will kick-start a new stage in his growth - such as an adorable walking device that babies can either sit on or push in front of them, that we have named Lionel the Lion. It roars. So does Owen.
On his actual birthday, which was a Monday, I took Little O to get some professional photos taken. Out here it is perfectly normal to get photos done ALL THE LIVE LONG DAY. I have friends who took professional shots every month for the first year of their son's life, and others who don't let a national holiday pass without marching in to a photo studio: Easter, Christmas, Valentine's Day; their daughter has a portrait for all of 'em. I, however, prefer to be a cheap-ass mother, and felt that some nice photographs to commemorate the first year in my son's extremely challenging life were more than appropriate. Owen had other plans, of course, and didn't smile for the camera for most of the session. Of the thirty-or-so shots the photographer took, only four or five were nice enough to use. I ordered some for home and family, but it's not something I plan on doing every year. But this year was special.
On the Wednesday of Birthday Week, Owen had surgery to repair his cleft palate and take off that fucking ugly ear tag he's had since he was born. He was a complete trooper during and after his operation, and my mouth fails me when I try to describe how brave and strong he is. His fourth operation in a year, and he's such a superstar. My heart just swells with pride at the strength of his character, and I tell him that every day. He has to wear these ridiculous arm restraints for two weeks so he doesn't suck on his fingers and pop open his stitches - yuk. It's incredibly hot over here at the moment (yesterday it was 82F/28C) and those restraints stink like a son of a bitch with Owen's sweat. Thankfully we have two pairs and I've been able to wash them, but they're still not nice for him to wear in the heat and I haven't been particularly diligent about him wearing them when he's fussy. At the moment he has a horrible stomach bug, and it seems cruel to deny him the comfort of sucking on his fingers or thumb when he's feeling crappy. I've been watching him to make sure he doesn't get too aggressive and potentially harm the surgical site, and so far, so good.
On Monday of this week I took him up to the GI clinic to see if we could change his formula. He's been on Neocate since he was born, which is a hypoallergenic, amino-acid based formula suitable for children who just won't tolerate anything else. After Owen passed his allergy study a couple of weeks ago, his doctors have been keen to move him on to something with higher calories and a cheaper price tag. So now he's on something called Pediasure, which is widely available and comes pre-mixed. Hallelujah! Unfortunately, the night we started weaning him on to it, he came down with a stomach bug and temperature, and hasn't been tolerating feeds of any large volumes at all. I'm just hoping it's the bug and not the formula.
I do feel guilty when Owen gets ill, because I take down the amount of food I give him. When he's ill he throws up more, regardless of whether the bug is respitory or gastrointestinal, so it seems cruel to push as much food as I can in to his stomach, only for him to bring it up violently and with great distress. So I tend to ignore our regular schedule (8am, 12pm, 5pm and overnight starting at 8.30pm) and allow him to sleep as much as he wants to. It does mean though that not only does he miss complete feeds, he doesn't even get a full feed when he does eat. It's that ever-present issue of trying to do what's best for him versus what keeps him happy: balancing his nutritional needs with his comfort. He's so unwell at the moment that he's waking up every ten minutes or so at night (don't even get me started on how exhausted I am after the last two nights), and throwing up his overnight feed, which means he's not getting that full amount either. I feel very guilty when he doesn't gain weight during an illness, but I try and remember that if he were a normal child, fed in a normal way, then he'd probably be refusing to eat anyway. This is a similar thing, I guess.
In a couple of weeks I take Owen in to discuss the results of an immunology study he had done. His doctor called me and requested I bring him in, which scares the bejesus outta me. Apparently some of his 'levels' came back too low, which is a strong indicator of an immune deficiency disorder. Those are pretty scary and something which I know next to nothing about. I just hope it's not so bad he eventually requires a bone marrow transplant, or infusions every month. The more stuff I can manage from home, the better.
Owen qualified for Medicaid! Hurrah! Too dull to explain here, but it means that a lot of our financial problems associated with his care will now be handled by the state of Wisconsin. This is fantastic news and I'm just waiting for him number to arrive in the post so I can call all his healthcare providers and tell them to stick their medical bills up their arse. I will relish every single call.
Tina.
Monday, May 17, 2010
Owen is one!
Just a quickie: Owen turned one today!
Really, really happy and I'll update more later this week. He has surgery and some other stuff, so there will be plenty to write about...
Tina.
Really, really happy and I'll update more later this week. He has surgery and some other stuff, so there will be plenty to write about...
Tina.
Monday, March 15, 2010
Day Eight and Surgery Stuff
Weight: 214.1 lb
Well, I dropped over 5 lb, which is pretty cool! Diet went really, really well last week until Friday, when I abandoned all pretenses at the hospital and shared a Galaxy bar my fantastic friend J had imported from the UK. I think we all deserved it, given the situation. And I'm back on track now.
Owen's surgery went very well, although his left eye isn't nearly as open as his right and this is causing both me and his surgeon a bit of concern. If it's just some extra swelling squeezing it shut then given enough time, it will look the same as the right. However, if the stitches have come open or Owen has rubbed his eye somehow, then he'll have to go back to the hospital for an adjustment. Other than that though, things have been going well. We have to apply an ointment to the corneas and incisions four times a day to help things heal and stop his eyes drying out, which is utterly exhausting and Owen absolutely loathes it. In addition, as he also had tubes put in his ears to relieve the excess fluid build-up that was preventing his eardrums from vibrating properly, we have to put drops in his ear canals twice daily. He doesn't like that much either. AND we have to give him antibiotics by mouth (read: tube) four times a day AND cover his eyes in these strange metal shields at night to help keep things moist. He likes none of these activities and I'm so pleased the surgeon said we can start cutting back on everything from today.
You know, I'm really really tired. I feel as though I can never sleep enough, although I get around seven hours a night usually, and catch up on naps at the weekend. I think the burden of caring for Owen is just wearing me down, although I don't resent doing it. I just wish I were able to trust someone, anyone else to do it for a few days to give me a rest. I want a week off. It occurred to me today (sitting on the loo, of course), that I haven't had a real day off since before Owen was born. Such is the life of a mother who stays at home, I guess. Mike gets days off from work but even when that happens, I'm still working. It may be my fault, but I can't even relinquish control to him when he is home, because he often forgets the most basic of Owen's needs. Take Owen's nighttime routine, for example: every night we have the same routine of medications, changing into pyjamas and a bedtime feed. Every other night we bathe Owen as well. With all the extra gumph post-surgery, this routine is currently taking us a good 45 minutes, which we start at 9.00pm in order to start his bedtime feed at 10.00pm. SO... I always have one eye on the clock, making sure we get things started on time, and when 9pm rolls around I turn to Mike and tell him it's time. His usual response? "What needs doing?"
"What ALWAYS needs doing, Mike?"
Sigh. Then he'll act surprised at my tone and ask what he should start doing. Oh, I don't know! How about you just START doing SOMETHING? I feel I need to double-check everything he's up to, just to make sure he doesn't miss a dose of a medication, puts a new gauze around Owen's mic-key button, or even just gets the right volume of formula ready. If I don't, something always goes amiss and I'm really tired of being the safety net.
Don't get me wrong: Mike is a fantastic father and I do think that if I left him and Owen alone for a weekend that Owen would eventually get everything he needs, but to me that's not good enough. I need a partner who is on the same wavelength and is already thinking about what step comes next before I have to turn to him at 9pm and tell him so. I need a 24-hour father, just like I'm a 24-hour mother.
Tina.
Well, I dropped over 5 lb, which is pretty cool! Diet went really, really well last week until Friday, when I abandoned all pretenses at the hospital and shared a Galaxy bar my fantastic friend J had imported from the UK. I think we all deserved it, given the situation. And I'm back on track now.
Owen's surgery went very well, although his left eye isn't nearly as open as his right and this is causing both me and his surgeon a bit of concern. If it's just some extra swelling squeezing it shut then given enough time, it will look the same as the right. However, if the stitches have come open or Owen has rubbed his eye somehow, then he'll have to go back to the hospital for an adjustment. Other than that though, things have been going well. We have to apply an ointment to the corneas and incisions four times a day to help things heal and stop his eyes drying out, which is utterly exhausting and Owen absolutely loathes it. In addition, as he also had tubes put in his ears to relieve the excess fluid build-up that was preventing his eardrums from vibrating properly, we have to put drops in his ear canals twice daily. He doesn't like that much either. AND we have to give him antibiotics by mouth (read: tube) four times a day AND cover his eyes in these strange metal shields at night to help keep things moist. He likes none of these activities and I'm so pleased the surgeon said we can start cutting back on everything from today.
You know, I'm really really tired. I feel as though I can never sleep enough, although I get around seven hours a night usually, and catch up on naps at the weekend. I think the burden of caring for Owen is just wearing me down, although I don't resent doing it. I just wish I were able to trust someone, anyone else to do it for a few days to give me a rest. I want a week off. It occurred to me today (sitting on the loo, of course), that I haven't had a real day off since before Owen was born. Such is the life of a mother who stays at home, I guess. Mike gets days off from work but even when that happens, I'm still working. It may be my fault, but I can't even relinquish control to him when he is home, because he often forgets the most basic of Owen's needs. Take Owen's nighttime routine, for example: every night we have the same routine of medications, changing into pyjamas and a bedtime feed. Every other night we bathe Owen as well. With all the extra gumph post-surgery, this routine is currently taking us a good 45 minutes, which we start at 9.00pm in order to start his bedtime feed at 10.00pm. SO... I always have one eye on the clock, making sure we get things started on time, and when 9pm rolls around I turn to Mike and tell him it's time. His usual response? "What needs doing?"
"What ALWAYS needs doing, Mike?"
Sigh. Then he'll act surprised at my tone and ask what he should start doing. Oh, I don't know! How about you just START doing SOMETHING? I feel I need to double-check everything he's up to, just to make sure he doesn't miss a dose of a medication, puts a new gauze around Owen's mic-key button, or even just gets the right volume of formula ready. If I don't, something always goes amiss and I'm really tired of being the safety net.
Don't get me wrong: Mike is a fantastic father and I do think that if I left him and Owen alone for a weekend that Owen would eventually get everything he needs, but to me that's not good enough. I need a partner who is on the same wavelength and is already thinking about what step comes next before I have to turn to him at 9pm and tell him so. I need a 24-hour father, just like I'm a 24-hour mother.
Tina.
Thursday, March 11, 2010
Surgery
Tomorrow is Owen's surgery date. Not a lot to add to that, other than to please keep him in your thoughts and wish him a speedy recovery afterwards. He's a trooper, is our little lad.
I'll add more post-surgery, but as I've been telling my family and friends: no news is good news.
Tina.
I'll add more post-surgery, but as I've been telling my family and friends: no news is good news.
Tina.
Saturday, March 6, 2010
Twenty things to be thankful for
1. Owen is alive.
2. Spring has finally arrived and I don't have to wear umpteen layers to leave the house anymore.
3. Now the weather's warmer I am able to take Owen out for walks again.
4. Our kitchen is nearly finished.
5. There are many, many people out there in the world who love me and my son, and think about us every single day.
6. One of those people is my mother-in-law, who sent us about one hundred home-baked cookies the other day, just because she thought we'd like them.
7. Owen has begun some pre-crawling movements, which gives me hope.
8. I am able to make a small living doing something I absolutely love, while staying at home with my son.
9. I am starting my new diet on Monday and the food sounds both delicious and cheaper than our normal processed stuff.
10. Owen's surgery is on Friday... finally.
11. I have several fantastic friends who have already booked themselves in to come to Owen's first birthday party in May, as well as Mike's entire family.
12. One of these fantastic friends is accompanying me to Owen's surgery so I don't go to pieces.
13. Two other fantastic friends are preparing some dishes for me and Mike so we don't have to cook when Owen comes home from the hospital.
14. I am learning something new everyday, and putting most of it to good use.
15. Owen will qualify for Katie Beckett Medicaid, which will eliminate most, if not all, of our remaining medical expenses for him this year.
16. A remarkable family donated nine cans of Owen's expensive formula to us, which is about half a month's supply.
17. I have some new music to jive along to.
18. I have a wonderful, supportive husband who works incredibly hard.
19. My PPD now only rears its ugly head every so often, and I know what it is now so I'm better at dealing with it.
20. My son is both beautiful and hilarious and I love him more than he'll ever fully realise.
2. Spring has finally arrived and I don't have to wear umpteen layers to leave the house anymore.
3. Now the weather's warmer I am able to take Owen out for walks again.
4. Our kitchen is nearly finished.
5. There are many, many people out there in the world who love me and my son, and think about us every single day.
6. One of those people is my mother-in-law, who sent us about one hundred home-baked cookies the other day, just because she thought we'd like them.
7. Owen has begun some pre-crawling movements, which gives me hope.
8. I am able to make a small living doing something I absolutely love, while staying at home with my son.
9. I am starting my new diet on Monday and the food sounds both delicious and cheaper than our normal processed stuff.
10. Owen's surgery is on Friday... finally.
11. I have several fantastic friends who have already booked themselves in to come to Owen's first birthday party in May, as well as Mike's entire family.
12. One of these fantastic friends is accompanying me to Owen's surgery so I don't go to pieces.
13. Two other fantastic friends are preparing some dishes for me and Mike so we don't have to cook when Owen comes home from the hospital.
14. I am learning something new everyday, and putting most of it to good use.
15. Owen will qualify for Katie Beckett Medicaid, which will eliminate most, if not all, of our remaining medical expenses for him this year.
16. A remarkable family donated nine cans of Owen's expensive formula to us, which is about half a month's supply.
17. I have some new music to jive along to.
18. I have a wonderful, supportive husband who works incredibly hard.
19. My PPD now only rears its ugly head every so often, and I know what it is now so I'm better at dealing with it.
20. My son is both beautiful and hilarious and I love him more than he'll ever fully realise.
Thursday, February 11, 2010
Bit mad.
Sorry it's been a while since I updated, but things have been a bit mad in my household. First Mike's grandfather passed away so we went out there for the funeral and to spend time with his family, and then Owen caught his third bout of pneumonia and we had to cancel his surgery this Friday.
Bit cross about cancelling it, but what can you do? If he's sick, he's sick. The silver lining though is that ENT is now able to get involved on the new surgery date (March 12th) and put his ear tubes in sooner than May. So yeah... annoying that we've had to postpone things, but good news about improving his hearing two months ahead of schedule.
Bit cross about cancelling it, but what can you do? If he's sick, he's sick. The silver lining though is that ENT is now able to get involved on the new surgery date (March 12th) and put his ear tubes in sooner than May. So yeah... annoying that we've had to postpone things, but good news about improving his hearing two months ahead of schedule.
Monday, December 21, 2009
Big, adult decisions.
I took Owen to the eye specialist this afternoon to get his eyelids assessed. When we went to the opthamologist a couple of weeks ago she mentioned that in addition to his optic nerve pressure there was also a possibility of his eyelids obscuring his vision. His eyelids have never opened very far, known as a condition called Blepharophimosis; it's indicated by small eye openings horizontally as well as verically, a low nasal bridge and some other stuff. Apparently it's quite rare. How lucky for us to have won THAT lottery.
The surgery involves putting in a small piece of silicone tubing into each eyelid crease, then attching these to the muscle above the eyebrow which controls the opening and closing of the eyelid. Apparently to do this in both eyes will take several hours and he'll have black and blue eyes when it's over. Whooopie. He'll also have to stay overnight at CHOW.
Now the big, adult decision we have to make is whether the major benefit to this surgery is going to outweigh the major drawback. Owen will certainly be able to see better and he won't have to tip his head back all the time, but on the othe hand... he will no longer be able to close his eyes all the way. Ever, unless we completely reverse the surgery. So while he will still be able to sleep, whoever is looking after him will have to make sure they put ointment on his eyes during the night to stop them drying out. Yes, it's inconvenient for us, but what isn't these days? No, my concern is him having infections in eyes that can't blink properly and in his general appearance as he ages. Can you imagine sleeping next to your boyfriend for the first time, only to discover his eyes don't close? Freaky. Apparently his eyes will be fully open immediately after surgery and will then learn how to close partially as time goes on. They won't ever close all the way though.
It's at times like these I feel at a crossroads. I want to ask Owen what HE wants, but that isn't possible. When he was tiny we made the decision to place a G-tube, but I've regretted this ever since and have wondered if his oral aversion to bottle-feeding was a direct result of it, not in spite of it. And now we have another decision to make that could affect his development. We're being told it will help him, because the head-tipping is so acute it's preventing him from learning how to sit and stand, but how do we know this? I mean, we were told the G-tube was a must-have, but now I'm not so sure... what if this is the same thing?
Even though Mike and I talk about this stuff, because he's not at these appointments with me I often feel very alone. Very pressured, very alone and sometimes very unsure. I can't wait for the day Owen is old enough to tell me what HE wants.
Tina.
The surgery involves putting in a small piece of silicone tubing into each eyelid crease, then attching these to the muscle above the eyebrow which controls the opening and closing of the eyelid. Apparently to do this in both eyes will take several hours and he'll have black and blue eyes when it's over. Whooopie. He'll also have to stay overnight at CHOW.
Now the big, adult decision we have to make is whether the major benefit to this surgery is going to outweigh the major drawback. Owen will certainly be able to see better and he won't have to tip his head back all the time, but on the othe hand... he will no longer be able to close his eyes all the way. Ever, unless we completely reverse the surgery. So while he will still be able to sleep, whoever is looking after him will have to make sure they put ointment on his eyes during the night to stop them drying out. Yes, it's inconvenient for us, but what isn't these days? No, my concern is him having infections in eyes that can't blink properly and in his general appearance as he ages. Can you imagine sleeping next to your boyfriend for the first time, only to discover his eyes don't close? Freaky. Apparently his eyes will be fully open immediately after surgery and will then learn how to close partially as time goes on. They won't ever close all the way though.
It's at times like these I feel at a crossroads. I want to ask Owen what HE wants, but that isn't possible. When he was tiny we made the decision to place a G-tube, but I've regretted this ever since and have wondered if his oral aversion to bottle-feeding was a direct result of it, not in spite of it. And now we have another decision to make that could affect his development. We're being told it will help him, because the head-tipping is so acute it's preventing him from learning how to sit and stand, but how do we know this? I mean, we were told the G-tube was a must-have, but now I'm not so sure... what if this is the same thing?
Even though Mike and I talk about this stuff, because he's not at these appointments with me I often feel very alone. Very pressured, very alone and sometimes very unsure. I can't wait for the day Owen is old enough to tell me what HE wants.
Tina.
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