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Post by cheyanne12 on Sept 1, 2004 1:01:33 GMT -5
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Post by cheyanne12 on Oct 30, 2007 19:03:56 GMT -5
I use to have a list of when to screen our kiddos for different things like hearing, eyes, thyroid, etc.. I seem to have lost the list... anyone know where I can find one?
Thanks,
Suz
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Post by cheyanne12 on Jul 23, 2007 17:48:50 GMT -5
Thank you everyone for your love and support. It means a lot to us.
Sincerely,
Suzanne Wife to David Mommy to Savannah, Curtis, Brandon, Nathan and Noah (ds)
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Post by cheyanne12 on Jul 7, 2007 17:41:08 GMT -5
Hello everyone....
Noah's date has been set to August 9th to close the ASD and PDA with catheterization. I sat here today crying over the letter that tells you what time to come. I'm going to need Gods strength on that day so please keep Noah in your prayers.
Noah is three years old and he has sensory issues. He hates going to the doctors and it took three of us to hold him down to check his ears.... four of us to take blood. He is one strong little boy!
Thanks in advance,
Suzanne, David and family
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Post by cheyanne12 on Apr 26, 2007 13:12:11 GMT -5
Hello all...
Our three year old son, Noah, is going to need to have his ASD and PDA closed up. We've been given the option of open heart surgery or catheterization using the aplatzer septal occluder and a coil. One surgeon said he was not for the catheterization because the devices are new and who is to say what the future will bring, but he is for surgery and that is what he does. The cardiologist is for what he does, catheterization.
So we are going for yet another opinion at CHOP. I was told that once a cardiologist at CHOP says catheterization, then the surgeon is behind the cardiologist. I've had the same questions on the devices and to what the future may bring. When you read about the devices, and you see what could go wrong, well... it's scary either way.
We waited over two years to adopt our son with Down syndrome and he has iris and retina coloboma in his one eye.
They say there are less risks with the catheterization, but that is based on only how many years of study? I'm sure there are other families out there who have gone down this road.
We'd love to hear from you.
Sincerely,
Suz wife to David, Mommy to Savannah, Curtis, Brandon, Nathan and Noah (ds)
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Post by cheyanne12 on Apr 19, 2007 19:32:31 GMT -5
We went to meet with a surgeon and a pediatric cardiologist... hoping for certainty. We left the hospital still not sure what to do... each dr saying his option was what he would do for his children. Having an option can be a nice thing, but it can also be very hard since you want to make the BEST choice for your child and the RIGHT choice. We were told by the surgeon he would have closed the holes when our son was two (he's now three). The ped. card. said we can wait 6 months if we want to.
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Post by cheyanne12 on Apr 6, 2007 18:29:19 GMT -5
I received an email from a pediatric cardiologist in Cinn. OH who was surprised that I'd be given a choice in 2007. He was all for the catheterization and said he's been doing it since the 1980's. I made an appointment to meet with both the surgeon and the pediatric cardiologist to get more information. It's going to be a long two weeks!
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Post by cheyanne12 on Apr 5, 2007 21:27:41 GMT -5
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Post by cheyanne12 on Apr 5, 2007 12:18:07 GMT -5
I'm looking for information on this as well. We were just told that our three year old son will need to get his ASD and PDA repaired and we have the choice of either open heart surgery or catherization using a coil to close up the PDA and an umbrella like device for the ASD. Noah's ASD is 7 mm in size. He is very active and doing well, but I guess they don't feel waiting another year is going to change much. Noah is adopted and in the beginning we were also told the holes would close up on their own without any repair being needed. So we are looking for information as to what is best in the long term for our son. From what I understand the new devices used do not have long term results. I'm wondering if there is a possibility that the body can reject these devices. So you are NOT alone and we were told we can choose either late spring or early summer for our son's holes to be repaired.
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croup
Apr 6, 2007 18:51:10 GMT -5
Post by cheyanne12 on Apr 6, 2007 18:51:10 GMT -5
Our son, Noah, who is three has had one episode a year so far. It seems like every time he got a cold he ended up with croup and he would wake up with it. It was very scary for us too. We ended up at the ER with every episode. We were told to either take him into a hot steamy bathroom or take him outside. When you have five kids at home, and it's late at night we found often we'd be out of hot water. We have electric heat and I always felt the house was too dry... so we began running a humidifier in his room. Noah has ASD and PDA and this past year he just seemed to be sick through winter. I had one doctor tell me that If I wanted to be rid of this, I should move to Florida. He also told me to not give the entire prednisone and to save a dose of it for the NEXT time so I'd have it when Noah had another episode of croup. I'm, of course, hoping that after his holes are closed in his heart that he won't have croup. I can wish!
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Post by cheyanne12 on Nov 30, 2005 22:44:43 GMT -5
Thank you so much for the wonderful advice. It seems to be working.
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Post by cheyanne12 on Nov 26, 2005 16:41:58 GMT -5
My son has red cheeks and they seem a little rough. I'm wondering what you can do about this if anything at all.
Thank you.
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Post by cheyanne12 on Sept 22, 2005 20:39:17 GMT -5
Allisa,
Thank you for your response. I do not know what these shots are since nobody has mentioned them to me. Our ped. cardiologist is from Hershey Medical in PA and I thought that this was a pretty reputable place. We recently moved here. Our last ped. cardiologist told us that they may do the procedure between the ages of 2 and 3 but it was a wait and see situation. Our son not only has these conditions but he also has coloboma.... a key hole in the pupil of the right eye which seems to look bigger than it did when he was an infant. I'd like to know more about the shots you mentioned and I'm wondering where you are from. Open heart surgery scares the heck out of me perhaps because I've read posts on other forums from people who have lost their children. I keep praying for a miracle so that no surgery is ever needed and those holes close, but the thought of the two chambers becoming larger does bother me. The cardiologist doesn't seem too concerned though. It's nice to know that your daughter went through surgery successfully. I have SO much to learn about all of this.
Sincere thanks,
Cheyanne
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Post by cheyanne12 on Sept 20, 2005 13:47:20 GMT -5
Today I took my 20 month old son to see the ped. cardiologist who informed us that our sons PDA was closing but he still has atrial septal defect but the RA and the RV were enlarging due to increase blood flow. (shouldn't we be concerned about that?)He didn't seem too concerned about it and told us that it's still possible for the asd to close up but they would wait till he was about 4 years old to do the catherization. He told us to come back in 6 months. At first I was glad that the PDA was closing up, but then I began worrying about those other chambers enlarging... wouldn't this mean additional stress on the heart... isn't that a bad thing? I guess I'm feeling a bit sad today because I had high hopes that the news would have been that everything closed up and all was well. It's horrible when you want to think positive and you come out of the office with that unsure feeling of what the future will bring. To make matters worst, I work part time in a day care center and I guess I'm afraid I will bring home sickness to my son. The cardiologist also told us to let him know if my son has any lung problems in the future. Seems like I've been coming home with colds lately and I sure don't want to pass it on to my son.
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