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Post by Chester on May 26, 2005 12:31:10 GMT -5
Yesterday was JT's big day. He had his Tonsils and Adnoids removed, his tear ducts probed and tubes put in his ears. I think it was harder on Mom and Dad than on him!
We were expecting for him to spend the night in the hospital and for him to basically be a noodle for a good week.
The surgery was at 7:30 in the morning and we were home at 4:00 on the same day. He was sick and tired of those nurses trying to touch him.
He has eaten two soggy Ego waffles, and I've had to pick him up several times to keep him from running and jumping.
They told us that sometimes it is worse 5 days after the whole ordeal. Which I'm ready for. I guess when you have a child with special needs we're always ready for the worse case.
Our 10 year old son, whom adores JT, was thrilled to have his brother home. We had been talking that this might help him to "talk a little better". Which in our 10 years mind meant something different than in our "parent minds". The first thing Cory asked JT was to say "howdy brother". Cory then went on to tell us that the surgery didn't work, because he still couldn't understand much of what JT was saying. It got me to wonder if there was such a magical surgery to help JT articulate would I put him through it? I know there aren't specific risks or anything, but the concept just started to make me wonder how much I would chose to "medically change" him if there were options. Would you?
Regardless, I am so thankful yesterday is in the past!
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Post by kristin on May 26, 2005 12:43:33 GMT -5
My first instinct is to say "NO WAY!!" , but then I think, if Cole was hurting or suffering somehow, I would have to consider that. And some might say the inability to clearly articulate might be a cause for suffering at some point in a person's life, but it certainly doesn't cause pain of the physical nature. When he was first born the doctors told us "If we could, we'd suck the extra chromosome out of every one of his cells." And I briefly toyed with the idea that "If this were possible, I would let them!!" But now, I think I have come to realize that this little man with the extra chromosome is exactly as he was intended to be. There is no such thing as the "Cole without Down Syndrome". That would be a different child. So many of the things I absolutely love about Cole are a result of that blessed extra chromosome. So, though I haven't thought through every scenario of "medically changing" him, I think I'll keep this guy and his extra 21 too! And it sounds like JT came through his procedures with flying colors!! What a relief for you! I am glad for you that this is over.
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Post by momofrussell on May 26, 2005 13:07:27 GMT -5
On a whole, no, I wouldn't. BUT.. I DID go to GREAT lengths for Russell to get his lens implants. He had cataracts at birth and after they removed them we were told he could have the implants at arounf 4-5 yrs old. We had a VERY prominent ped eye doc in CA and then we moved. The next really good doc said NOPE.. won't do it. I then called our doc in CA and she agreed. After all this time I didn't understand it. I was putting him at risks and his sight was too far gone that it wouldn't do any good developementally for him. I begged to differ so I then went to another doc here in STL that is even BETTER then the first doc I saw. He agreed. So, I went to great lenghts for that surgery to "medically change" Russell. But beyond that, I don't know what else I would do in the surgery catagory for changes. A.
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Post by rickismom on May 26, 2005 13:44:06 GMT -5
Assuming a low-risk proceedure--- if it would make her life easier, YES I would. As for her being different--- well my teens are different then they once were and I still love them! (I think.... ;D )
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Post by Valerie on May 26, 2005 14:09:32 GMT -5
Yes, I think I would. I realize this would not be a life or death procedure, but if it was an "easy" surgery, and would make life easier and better for him, I'd do it. I think good communication skills would send our kids REALLY far. I wouldn't think of it as wanting to change who he is, because I honestly love just as he is, with all my heart! But I would think of it as making things easier for my son in the long run, and don't we want to do that for all our kids?
And Chester, so glad JT's home and didn't have to stay in the hospital!
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Post by ValerieC on May 26, 2005 18:46:53 GMT -5
Just putting another thought out there....there are people who put their DS kids through plastic surgery so they don't look like they have DS. Does that make their lives better? Is this same kind of thing?
Just playing the devil's advocate...
I think I would definitely explore the option if it gave my daughter better communication skills. I would do whatever it took for my typical kids to communicate well, I would do it for her as well.
Valerie C
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Post by Cbean on May 26, 2005 19:03:07 GMT -5
Glad to hear JT's surgeries are in the past and he is home with his family. I think more for you than him...we're the one's left shell-shocked afterwards! I love your question and my answer is yes. I remember way back when there wasn't a child with DS in my future, I was watching a show on one of those Discovery type channels. The show was about cosmetic surgery on children with DS to make them look "typical." I remember watching it in horror b/c this poor little 3 y/o went through major surgery and came out all confused and in pain. I thought to myself "why would a parent put their child through that?" Then I felt guilty for passing judgement on them when I knew nothing of what they were going through. Now that I do, I say shame on them!!! How could they put that poor little boy through that. Now, anything that would help my child's QUALITY of life would be done, no questions asked. If all the research that's going on could produce a magic little pill that could help the neurons get to the right place so that my child's brain could function better - I'd be first in line. Ok, umm, I'll get off my soap box.
Again! Glad to hear JT's big day is over! Oh and get ready for stinky breath. Usually kicks in around the third day. I remember my son's and if it had a color it would be brownish-green.
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Post by CC on May 26, 2005 21:07:06 GMT -5
You asked "if there was such a magical surgery to help JT articulate would I put him through it?" K, for us Chris has been thru surgeries and most were not pleasant recovery was always very tuff and Colin and I always said NOOOO more unless is life threating BUT if there were a surgery to help Chris communicate better, we would do in a "HEART BEAT" no ifs ands or buts for us GLAD to hear all went will with JT's surgery and everyone is home where they BELONG CC ~
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Post by Kristen on May 26, 2005 21:55:57 GMT -5
If we could help him communicate and articulate better - IN A MINUTE! Yes, I would. I think the benefits would outweigh the inconvinience assuming it was something comprable to T&A.
As for plastic surgery...quick story. When Carter was born my best friend's mom said, Kristen, we know you will do everything you can for him and he is going to have a wonderful life. As for the rest, there's always platic surgery, so who cares? You have to know the woman to appreciate how it was said but I was like yeah, I see your point. NOT that I would get it for him any time soon, HOWEVER, that being said fast forward 15 or 20 years adn Carter comes up to me and says mom, you know, I'm a pretty happy guy, but people aren't taking me seriously and are treating me badly because of this silly eye fold thing. Do you think there's something we can do about it? All things being equal and once we put him through some counseling to make sure he wasn't expecting miracles and was asking for the right reasons (like any other person, but I woudl be more intense about it!) then I would say yes. I would not deny him the opportunity to change of his own free will if he were competent enough to present it to me in a way similar to that. Self love and acceptance it a GREAT thing, but some people have ears that stick way out and noses with big bumps (because of geneitc makeup!) that make them uncomfortable and self-conscious. They get them changed and no one says much about it, so I see no difference for Carter if he wants something like that. *I* would never, ever, suggest it or think it necessary because I love him like he is and would be sad forever if he looked different, but I would forego that if he really wanted it because some things are not about me. We aren't talking about wanting a D cup or butt implants here, KWIM?
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Post by Chester on May 27, 2005 6:07:27 GMT -5
A ~ I think what you did for Russel was for his quality of life. I think I would have pushed for implants also. Just curious did they make a difference for Russel?
I had never thought about or heard about plastic surgery before to change the physical features of DS. It is a different story when the person with DS asks for it, vs. the parents deciding that is should be done. I can see it as an elective plastic surgery, just like the choices the rest of society has to make, but again~ only when the person with DS wants it.
I can hardly believe I'm saying this because I was so worried about the initial surgery, but I do think if there was a magical surgery that would help JT communicate and articulate, I'd do it for him. It wouldn't change his personality, it wouldn't change who he is, I think just the opposite~ it would give him the opportunity to be himself FULLY.
Thanks for all of the well wishes. I'll watch out for the stinky breath, thanks for the warning!
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Post by momofrussell on May 27, 2005 6:56:30 GMT -5
Well, yes, quality of life.. but it was "medically changing" sugery too. It was the only thing I could think of actually LOL. Because I WAS on a quest to medically CHANGE him. To be honest with you, I thought that the DAY after his surgery he'd "magically" SEE and start pointing and talking and do what ALL the other kids w/DS do. Boy were my rose colored glasses screwed on tight! LOL. I went about a whole year or more seeing NO difference. Now, at the same time he had his surgeries that same year, he was DX'd with Autism. So at the time, I equated his lack of this or that to the eyes beacuse the DS and blindness was 4 yrs old, the Autism was new... so I dind't put 2 and 2 together. I thought 1 was 1 LOL. I didn't realize fully what the Autism was with Russell and that WHO he really was at the time WAS because of the Autism (coupled with the DS and blindness). So it took me a good year to actually fully understand what the Autism was and what he got out of the eye surgery. I REALLY REALLY thought this WAS THE surgery for him... truly I did. It took me a LONG time to get over that one. Those surgeries were my magic.. or so I thought. I have seen a GREAT improvement with Russell and don't think he'd EVER be here without his eyes. But it was a long time coming. I could never understand how someone actually thought blindness with DS was a good thing. I could never understand how someone could think HAVING eyes would NOT be helpful for developement. I thought it was like Child Developement 101...you need to SEE your world too! And thank goodness the 3rd doc agreed! A.
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Post by Jessie on May 27, 2005 11:25:51 GMT -5
Also glad to hear things went well with JT's surgery.
I guess I'm with everyone else on this one. I wouldn't dream of trying to take out the Ds whether it's physical characteristics or the genetic ones. But, I would do ANYTHING for him in a HEARTBEAT to help his communication skills.
Jessie
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Post by Debbie on May 27, 2005 21:55:30 GMT -5
Adrienne,
That was a very insightful commentary you typed about your son. Wow. You are so right Adrienne. Thank you so much for your insights.
By the way, I have Mosaic Down syndrome. I am forty four. I am very thankful that my family has taught me the value of true acceptance. It can work both ways. I finally accepted myself as I am and not what I thought others wanted me to be.
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Post by momofrussell on May 28, 2005 4:32:12 GMT -5
Thanks Debbie Kay! I figure along this journey of life, if I gain nothing else out of experiences I wish to gain insight and wisdom. I have been thinking and thinking about alterations for communication purposes since you all have shared what you would do. I can't picture it for me. I think because I thought the eye surgeries were suppose to be the "magic", I now can't fathom doing something medical if it would help Russell's communication. Which, if you think about it and who Russell is, it's ironic I say that. Because Russell does NOT speak NOR communicate. So a magical surgery for communication purposes would seemed up my alley. But I really can't picture it. A.
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Post by rickismom on May 28, 2005 14:39:12 GMT -5
First- I know of 2 older kids with DS who asked for surgery, and were pleased with the results.
Now- I confess that WE DID plastic surgery on Ricky- NOT from embarressment, and NOT from false hopes. We simply felt that people would relarte to her more normally if she had the surgery. We did it at age one--- was one bad week for her, but of course she doesn't remember it. And I have NEVER regretted it. She is so self confident, and I am positive that it has been a major factor in her inclusion, as people expect from her more than they would if she looked more affected. (Mind you, I am not against a "Down" look, I am only deally with the prejudice of the society around and "self-pride she still needs, as she is still obviously "down"- the surgery lessens the look, it doesn't wipe it out.
OK please don't eat me alive. I am NOT NOT saying that there is anything wrong with looking like a child with Down syndrome. But we felt that the more we could easily protect her from prejudice, the better.
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