We're about 10 days away from the big day, and my nerves are really frazzled. First, it seems as though his crease is developing in that droopy eye, but even more than that, I don't see the droop. It's scary, because I see it in the mirror, and in pictures, but otherwise doubt is creeping in. Every time he struggles away from me when I'm changing him or dressing him I worry about the post op care. Every time he snuggles into me because he's unhappy I wonder how many days/weeks I will spend with him at my breast. Mostly I worry about his personality changing because of all this. I've heard that kids who go under anesthesia do change their personality for a few weeks, I just hope he goes back. He's so young that I wonder if a two week change could be permanent. The real issue, is that at the end of the day this is kind of elective (though insurance is covering it as an in network medical procedure...yaaay!).
I did get some clarity over Simchas Torah. We were in shul, watching the dancing, and the woman I was standing next to glanced down at my husband holding my son, and said "so what's with his eye?" When I said he was born that way she was surprised, she asked because she thought I'd say someone bumped him with something or he bumped it himself. It didn't bother me, in fact it made me feel good that people notice. As I said, I just don't see it much. Later hubby was sitting with the kids, and a guy who was someone's guest walked up to my hubby and first gave a whole bunch of disclaimers before identifying himself as a pediatrician. The he asked if our pediatrician was guiding us as what to do about our son's eye, espescially since he is trying to see from that eye by lifting his head, which we wouldn't want to be a habit. So hubby said yes, we had seen a pediatric opthamolgist, and that now we were going to a specialist in Columbia Presbytarian, and he would have surgery in less than two weeks.
I don't know how the man felt afterwards, but I felt fantastic, and was so happy that he said something. So happy. So at least some of the edge has come off, but I guess I can expect to feel this way for the next few weeks.
Showing posts with label Ptosis. Show all posts
Showing posts with label Ptosis. Show all posts
Sunday, October 23, 2011
Friday, May 20, 2011
The Date is Set
We went to the Occu-plastics doctor on Thursday. There was no real examination, he just took a picture, measured his eye, and discussed which of four surgeries he was most likely to need. Then he discussed when it should be done, and why, what the results would be, and the post op protocol. At the end of the meeting I went to the office to "check out," at which time they gave me all the pre-op info. I chose a date, and now it's all set.
The doctor explained that he likes to do it between the ages of one and two, the recovery is better and easier. My uncle (an Optometrist, but his thoughts really seem spot on) feels it goes beyond that, and beyond the social aspects of having a droopy eyelid. He feels that as a kid gets older he will keep compensating, and will hold his head a certain way, and stand a certain way because he wants better vision from that eye. If the surgery is done earlier he won't get into certain "habits," really ways for him to see better which may be harder to "undo," developmentally, if he were older.
I don't want to do this in the summer, with the sun exposure, and just the whole nature of the summer. It can be limiting in that there needs to be some care taken post surgery, and wouldn't want the other kids to be held back. The time that makes the most sense is November. Things are usually calm and quiet that time of year, with everyone back in routine, it's just easier to just recover, without a lot of other things going on.
So now this surgery is months away, and I won't be seeing the surgeon again I guess until the day of surgery. I do intend to call with some questions and hopefully I will be able to speak with him.
This is so strange, because now it's set, but it is so far away. I'm mostly nervous about the general anesthesia, but the whole things is just nerve wracking. Everyone in the know says do it, but it won't produce perfection, and adds other small problems in its wake. he'll be more prone to conjunctivitis, and his eye will probably never fully close. I guess that's likely better then what he has now, but it lets a little bit of doubt worm its way in.
That and the woman who told me today "oh, my friend's daughter had that and it went away on its own." MY uncle said that's not possible, certainly not congenital ptosis. So I guess that's not REALLY bothering me.
Luckily, I spoke to someone else whose kid had the surgery over 10 years ago, and she was very calming to speak to. She told me once it's done I won't even remember all the fear and to-do that went into the run up to the surgery.
I hope she's right.
The doctor explained that he likes to do it between the ages of one and two, the recovery is better and easier. My uncle (an Optometrist, but his thoughts really seem spot on) feels it goes beyond that, and beyond the social aspects of having a droopy eyelid. He feels that as a kid gets older he will keep compensating, and will hold his head a certain way, and stand a certain way because he wants better vision from that eye. If the surgery is done earlier he won't get into certain "habits," really ways for him to see better which may be harder to "undo," developmentally, if he were older.
I don't want to do this in the summer, with the sun exposure, and just the whole nature of the summer. It can be limiting in that there needs to be some care taken post surgery, and wouldn't want the other kids to be held back. The time that makes the most sense is November. Things are usually calm and quiet that time of year, with everyone back in routine, it's just easier to just recover, without a lot of other things going on.
So now this surgery is months away, and I won't be seeing the surgeon again I guess until the day of surgery. I do intend to call with some questions and hopefully I will be able to speak with him.
This is so strange, because now it's set, but it is so far away. I'm mostly nervous about the general anesthesia, but the whole things is just nerve wracking. Everyone in the know says do it, but it won't produce perfection, and adds other small problems in its wake. he'll be more prone to conjunctivitis, and his eye will probably never fully close. I guess that's likely better then what he has now, but it lets a little bit of doubt worm its way in.
That and the woman who told me today "oh, my friend's daughter had that and it went away on its own." MY uncle said that's not possible, certainly not congenital ptosis. So I guess that's not REALLY bothering me.
Luckily, I spoke to someone else whose kid had the surgery over 10 years ago, and she was very calming to speak to. She told me once it's done I won't even remember all the fear and to-do that went into the run up to the surgery.
I hope she's right.
Wednesday, August 4, 2010
It begins
We prayed and we waited a very long time for our little boy. Thank God we have six beautiful girls, and we love them to pieces. we were blessed with a son 9 weeks ago. He is healthy happy and cute, but he doesn't track objects with his eyes and he doesn't stay focused either. I want to keep track of this process, for me, and maybe one day my boy.
Have you ever prayed, really really prayed for something, and then you got it? It's the most amazing feeling in the world, to have something in your life that you wanted so much, but was pretty much out of your control to get, and God smiled upon you, and said yes. You feel loved, and you feel like your prayers really mattered, and you wonder what you really did to deserve it. Was it the prayers for someone else, two years before? Was it the charity you gave despite your own economics changing? Sometimes no is for the best too, but I'm glad I wasn't faced with needing to accept that. The only problem is, I wanted this so much. So much, and I have him, but I'm terrified of losing him.
I noticed at about seven weeks, that he didn't seem to hold his gaze, and that he didn't follow toys when moved across his field of vision. But he did smile, socially, meaning, on cue when I spoke to him or smiled at him. Could he learn that if he didn't see? He also has one eyelid that is very "droopy" and may, at the beginning at least have covered his one pupil, which I would assume would affect his sight. At his 9 week old well check up this week, I told the doctor about these issues and she did seem very concerned and suggested I go to a pediatric ophthalmologist. I was planning to go anyway about the droop eye, so now I'll go for both.
So now we wait. Until Wednesday. Thank God it's not that long of a wait, though originally they gave me an appointment for mid September and I pushed for earlier so they are squeezing me in. I did some research and I'm hopeful that it's just a delay in vision. I spoke to my brother in law, who is a pediatrician, and he told me not to worry.
Not to worry. All I do is worry. I can't look at him or hold him or play with him or feed him that I don't worry. I vacillate between can he see?, and I think he can see. Am I convincing myself? Well, he smiles and coos at all the right times, but I left him on my bed the other day for five minutes and when I came back he was smiling and cooing at himself. That's a good thing, but if I'm holding out hope that he is doing it on cue, then that kind of smashes that theory to pieces.
I'm almost afraid of him. But mostly it's that twinge inside of me when people coo at him, and look at him expectantly. They mostly can't tell. Inside I scoff when a toy is placed in front of him, but truthfully, I think he can see, I think he may not know how to look. I spoke to someone who just told me of two kids she knew with this problem and thank God they are fine now.
I feel like I'm grasping at things, just waiting for a sign that everything is OK, and he'll be all right. I think he can see, I think maybe he doesn't see well. He's a baby,he is nothing BUT potential, and we will work to achieve the fullest he can, whatever that may mean for him. I just want what is best for him, and I want him to be OK.
Wanting the best becomes another, "issue." The doctor. I'm using someone local, who I vetted through a referral agency, and she gets high marks. However, I have a few people telling me I MUST use this other person who is "the best." As my husband notes, "are there numbers on that?" Is it a cultural thing hat it always has to be the guy who's known as "the best?" To me, this is what money is for, good health care. So if insurance will only cover one opinion and I feel I need to go to this other guy. I will. But why do people do this? Do they think it makes others feel better? Because it doesn't. My daughter had emergency surgery on a broken elbow when she was three, and after the fact I was told I MUST take her to this other guy, to make sure it was done right. After the fact. Why do I have to second guess my primary guy? If they suggest someone why do I have to feel like I need to question them? Whatever this doctor tells me, I can choose to go to the other one after wards. It's just frustrating when you have a worrisome problem, and people tell you you are not handling it right, and you're left with niggling doubts about whether you are doing the right thing. Even though what you are told was suggested by a doctor, who has the best interest of your child in mind, and doesn't receive any kind of kickback. Plus, I don't need referrals, so it's not like insurance will blame the primary office for who I choose to go to. Why? Why? Why? these questions are not helpful in health care ad post construction situations. Second opinions. They've been around forever. I'd rather have a second opinion, then blindly (excuse the bad choice of words) follow one guy, because if he's "the best," who do you go to after wards?
Have you ever prayed, really really prayed for something, and then you got it? It's the most amazing feeling in the world, to have something in your life that you wanted so much, but was pretty much out of your control to get, and God smiled upon you, and said yes. You feel loved, and you feel like your prayers really mattered, and you wonder what you really did to deserve it. Was it the prayers for someone else, two years before? Was it the charity you gave despite your own economics changing? Sometimes no is for the best too, but I'm glad I wasn't faced with needing to accept that. The only problem is, I wanted this so much. So much, and I have him, but I'm terrified of losing him.
I noticed at about seven weeks, that he didn't seem to hold his gaze, and that he didn't follow toys when moved across his field of vision. But he did smile, socially, meaning, on cue when I spoke to him or smiled at him. Could he learn that if he didn't see? He also has one eyelid that is very "droopy" and may, at the beginning at least have covered his one pupil, which I would assume would affect his sight. At his 9 week old well check up this week, I told the doctor about these issues and she did seem very concerned and suggested I go to a pediatric ophthalmologist. I was planning to go anyway about the droop eye, so now I'll go for both.
So now we wait. Until Wednesday. Thank God it's not that long of a wait, though originally they gave me an appointment for mid September and I pushed for earlier so they are squeezing me in. I did some research and I'm hopeful that it's just a delay in vision. I spoke to my brother in law, who is a pediatrician, and he told me not to worry.
Not to worry. All I do is worry. I can't look at him or hold him or play with him or feed him that I don't worry. I vacillate between can he see?, and I think he can see. Am I convincing myself? Well, he smiles and coos at all the right times, but I left him on my bed the other day for five minutes and when I came back he was smiling and cooing at himself. That's a good thing, but if I'm holding out hope that he is doing it on cue, then that kind of smashes that theory to pieces.
I'm almost afraid of him. But mostly it's that twinge inside of me when people coo at him, and look at him expectantly. They mostly can't tell. Inside I scoff when a toy is placed in front of him, but truthfully, I think he can see, I think he may not know how to look. I spoke to someone who just told me of two kids she knew with this problem and thank God they are fine now.
I feel like I'm grasping at things, just waiting for a sign that everything is OK, and he'll be all right. I think he can see, I think maybe he doesn't see well. He's a baby,he is nothing BUT potential, and we will work to achieve the fullest he can, whatever that may mean for him. I just want what is best for him, and I want him to be OK.
Wanting the best becomes another, "issue." The doctor. I'm using someone local, who I vetted through a referral agency, and she gets high marks. However, I have a few people telling me I MUST use this other person who is "the best." As my husband notes, "are there numbers on that?" Is it a cultural thing hat it always has to be the guy who's known as "the best?" To me, this is what money is for, good health care. So if insurance will only cover one opinion and I feel I need to go to this other guy. I will. But why do people do this? Do they think it makes others feel better? Because it doesn't. My daughter had emergency surgery on a broken elbow when she was three, and after the fact I was told I MUST take her to this other guy, to make sure it was done right. After the fact. Why do I have to second guess my primary guy? If they suggest someone why do I have to feel like I need to question them? Whatever this doctor tells me, I can choose to go to the other one after wards. It's just frustrating when you have a worrisome problem, and people tell you you are not handling it right, and you're left with niggling doubts about whether you are doing the right thing. Even though what you are told was suggested by a doctor, who has the best interest of your child in mind, and doesn't receive any kind of kickback. Plus, I don't need referrals, so it's not like insurance will blame the primary office for who I choose to go to. Why? Why? Why? these questions are not helpful in health care ad post construction situations. Second opinions. They've been around forever. I'd rather have a second opinion, then blindly (excuse the bad choice of words) follow one guy, because if he's "the best," who do you go to after wards?
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