I know exactly how you feel. Adam has had glasses since he was 11 months old. We now purchase the easy twist, he hasn't been able to break the frame yet. You can twist them in any way you want and they have not broken. Our problem is now Adam hiding them all over the house the second our back was turn. Smart little cookie! ;D Good Luck!
My daughter Savannah now 8 and not DS had the surgery. She had went completely blind in one eye, so we ended up patching 3 mths one eye and then the other for 2 years. She got the surgery last year and how wonderful. There we're no real bad side effect except that she said it burned a bit after surgery but the drops they gave us helped with that problem. She is still wearing glasses but her vision has been staying good. I say go for it. If you wish I can send you a picture of before and after with Savannah. You will be amazed at the difference. Let me know by e-mailing me at my personal e-mail. Just write UNO MAS in the subject line. Claire
We do have a copy of the drug, but what is hard to understand is that he has had that drug twice before for anestitics. He just suddenly developped a reaction to it, so it is scary that he may do the same with another drug. The doctors have reassured us that at least this time they will be ready as they know ahead of time.
Thanks for all the encouragement. WRBLACK you are right, we are actually going to see if a needle biopsy can be done on the lump for now and see what we are up against. I really worry about the anesthelogy part of it, so if it can wait till he's alittle older then that would be fine with me as it doesn't seem to really bother him right now. The eurologist did mention something about it twisting.??
Well we had the results and Adam is due for surgery in Ottawa on September 29th 2005. I wish they could do it earlier. The last time he had anestiology he reacted really bad. And that was only for a short period for teeth extractions. Actually he had a reaction to the medication (which he had had before with no reaction, his heart rate dropped drastically and a 10 minute procedure turned into 2 hours) so it is a little more fritghening now to have hin put to sleep. That is why we go to Ottawa as the anestiololy team there have dealt with him before. We we're told thought that he will defenitely loose the right testicule. Would you beleive the doctor actually told us it may make him infertile. As If we'd worry about that now Tha!!!
Sharen, Adam had an undescendent testicule that they need to operate on. But when we saw the eurologist he discovered lots of fluid in both testicules and a small growth so we are going for ultra sound on the 22nd. I've been with this board about 2 years I think. And I WILL NEVER LEAVE. ;D ;D ;D I guess you guys are all stuck with me. ;D
Well we saw the Eurolohist today. He said he wasn't sure if it was his testicle because both sides are filled with fluids. We go for ultra sound next week. He will get sugery in Ottawa since the only time he has needed anesthetic it was there. Sure hpoe they can book us early enough. I hate the waitng game of not knowing what is wrong.
Thanks for all your support. Just to let you know Adam is seeing the eurologist on Saturday so wish us luck I think they will want to do the surgery in Sudbury which is only 4 hours away, but I worry a little as Adam has always had his surgeries in Ottawa (10 hours away) but they at least know him and the complications involved.. But Ottawa would take at least 1 year just to get an appointment to see a specialist right now and I agree with the specialist from Sudbury that it should not wait that long. Please keep us in your prayers Saturday.
Go ahead and vent anytime. We have also had some pretty bad Doctor's with "Know it all attitude: I wish they soemtimes listened to the parents. Once I told the specialist "Are you actually hearing me cause there is a difference with listening and hearing." That shook him up. They have actually intubated Adam without sedation at 9 weeks because this so called specialist beleived that children with DS do not feel pain before they are 6 mths old. As If!!! Tha!!! Because of the forced intubation he ended up going flat line and scar tissue damage in his thrachea wicht in turn made a stenosis narrowing)of 60% which made it very difficult for intubation for over 3 years. Thank God that the narrowing has grown with him and no surgery was needed to fix the problem. Now I go in whenever he has anything done to him. We are 2005 and they should be learning more and forget about the old fashion ways of thinking. I agree with you it is sooooo frustrating. Wow!! Now I've vented I feel a lot better too.
What a wonderful Grand-mother you are. To have taken this child in and willing to give him all the love and attention he needs. I'm sure with your help little Jordan will pick right up on everything. Post and let us know how it goes. And check out the bullitin board lots of info there. We are parents of 4, Ron 28, Francois 23, Savannah 8 and Adam 7 born with Down syndrome. You can also add a picutre in the photo album so we can all see your little angel. You can e-mail me at my personal address if you wish, just write UNO MAS in the subject line. Hope to hear more about you. Claire
Thank you so much for all the info. I did read up on it on the NET. But it is always better to hear it from ones that have actually been through it. We are still worried about the intubation problem but glad that the surgery itself is not as dangerous as I though, although every surgery can become serious sometimes. I was surprised how fast they recuperate. That is one good thing. We have an appointment with the Eurologist surgeon on the 5th of Febuary so I will feel a little more informed thanks to you all. Claire