Re: Update on a's cleft palate surgery

[Guest guest]

Anca - It all sounds harrowing. I'm so glad she came through it all so well. I'll keep a and your family in our prayers.

xo maggie

Mom to Olivia '01 and & '05 (IDs w/ DS)

To: Multiples-DS Sent: Sunday, December 7, 2008 8:05:30 PMSubject: Update on a's cleft palate surgery

Hello everybody,Thank you all for your prayers and thoughts. There is no doubt in my mind that they had a lot to do with a's speedy recovery.Thursday, Dec 4th was one of the toughest days of my life.... I know that her surgery cannot be compared with open heart or other more difficult surgery but this is… my baby and just the thought that she will be under for 3 and a half hours was driving my crazy. I'm pretty sure you all know what I mean.....The surgery started at 2 p.m and was done about 5.30. The surgeon told us that everything went very well (they also had tubes put in her ears) but was surprised to find out that somehow we were never told that a was supposed to be weaned of the bottle before surgery. They told us when we had our assessment in August that we should introduce the sippy cup without the valve(which we did but she doesn't like) but they missed to mention

the bottle thing…. Because of this the surgeon figured that she will have a really hard time to get the fluids she needed by mouth and told us to expect to be in the hospital a couple more days on top of what they initially thought (Mon-Tue vs. Sunday). a was discharged less than …48 hours after surgery. She is my little miracle and had an outstanding "performance" when it came to fluid intake. We are using a syringe at it is working (although it takes us a while). She has no issues with the spoon and for the next 3 weeks we're back to stage 1 baby food. She also has to wear arm restrains (3-6 weeks) so she can't put anything in her mouth. She has a lot of stitches in her mouth but she doesn't seem to be bothered by them (she still takes pain killers). She is doing really well. You wouldn't even know that she had surgery 3 days ago. They all assumed that it will take her longer to

recover and she proved everybody wrong. She is pretty amazing little girl.Thank you again.AncaProud Mommy toAlyssa (Jun 2004)a (T21) and Tianna (Nov 2007)

[Guest guest]

>Dear Anca,

I m so happy for your good news.

> Hello everybody,

>

> Thank you all for your prayers and thoughts. There is no doubt in my

> mind that they had a lot to do with a's speedy recovery.

>

> Thursday, Dec 4th was one of the toughest days of my life.... I know

> that her surgery cannot be compared with open heart or other more

> difficult surgery but this is… my baby and just the thought that she

> will be under for 3 and a half hours was driving my crazy. I'm pretty

> sure you all know what I mean.....

>

> The surgery started at 2 p.m and was done about 5.30. The surgeon

> told us that everything went very well (they also had tubes put in

> her ears) but was surprised to find out that somehow we were never

> told that a was supposed to be weaned of the bottle before

> surgery. They told us when we had our assessment in August that we

> should introduce the sippy cup without the valve(which we did but she

> doesn't like) but they missed to mention the bottle thing…. Because

> of this the surgeon figured that she will have a really hard time to

> get the fluids she needed by mouth and told us to expect to be in the

> hospital a couple more days on top of what they initially thought

> (Mon-Tue vs. Sunday).

>

> a was discharged less than …48 hours after surgery. She is my

> little miracle and had an outstanding " performance " when it came to

> fluid intake. We are using a syringe at it is working (although it

> takes us a while). She has no issues with the spoon and for the next

> 3 weeks we're back to stage 1 baby food. She also has to wear arm

> restrains (3-6 weeks) so she can't put anything in her mouth. She has

> a lot of stitches in her mouth but she doesn't seem to be bothered by

> them (she still takes pain killers).

>

> She is doing really well. You wouldn't even know that she had surgery

> 3 days ago. They all assumed that it will take her longer to recover

> and she proved everybody wrong. She is pretty amazing little girl.

>

> Thank you again.

>

> Anca

>

> Proud Mommy to

> Alyssa (Jun 2004)

> a (T21) and Tianna (Nov 2007)

>

[Guest guest]

Anca,

I am so happy to hear about the sucessful surgery and recovery. Seems like

once again a proved everyone wrong and is very strong, good qualities for

sure. thanks for the update !!

Irene

Re: Update on a's cleft palate surgery

>Dear Anca,I m so happy for your good news.> Hello everybody,> > Thank you all for your prayers and thoughts. There is no doubt in my > mind that they had a lot to do with a's speedy recovery.> > Thursday, Dec 4th was one of the toughest days of my life.... I know > that her surgery cannot be compared with open heart or other more > difficult surgery but this is… my baby and just the thought that she > will be under for 3 and a half hours was driving my crazy. I'm pretty > sure you all know what I mean.....> > The surgery started at 2 p.m and was done about 5.30. The surgeon > told us that everything went very well (they also had tubes put in > her ears) but was surprised to find out that somehow we were never > told that a was supposed to be weaned of the bottle before > surgery. They told us when we had our assessment in August that we > should introduce the sippy cup without the valve(which we did but she > doesn't like) but they missed to mention the bottle thing…. Because > of this the surgeon figured that she will have a really hard time to > get the fluids she needed by mouth and told us to expect to be in the > hospital a couple more days on top of what they initially thought > (Mon-Tue vs. Sunday). > > a was discharged less than …48 hours after surgery. She is my > little miracle and had an outstanding "performance" when it came to > fluid intake. We are using a syringe at it is working (although it > takes us a while). She has no issues with the spoon and for the next > 3 weeks we're back to stage 1 baby food. She also has to wear arm > restrains (3-6 weeks) so she can't put anything in her mouth. She has > a lot of stitches in her mouth but she doesn't seem to be bothered by > them (she still takes pain killers). > > She is doing really well. You wouldn't even know that she had surgery > 3 days ago. They all assumed that it will take her longer to recover > and she proved everybody wrong. She is pretty amazing little girl.> > Thank you again.> > Anca> > Proud Mommy to> Alyssa (Jun 2004)> a (T21) and Tianna (Nov 2007)>

[Guest guest]

A surgery is a surgery! Anything that puts your child out for that long can be heart wretching! I am happy to hear your amazing little girl is doing so well! When had open heart surgery at 5 months I think it was tougher on us then on was him! He came home like nothing every happened! I have heard that Down Syndrome children have a high pain tolerance!

Beth- Mom of and Landon 5yr. old identicals-DS

Subject: Update on a's cleft palate surgeryTo: Multiples-DS Date: Sunday, December 7, 2008, 7:05 PM

Hello everybody,Thank you all for your prayers and thoughts. There is no doubt in my mind that they had a lot to do with a's speedy recovery.Thursday, Dec 4th was one of the toughest days of my life.... I know that her surgery cannot be compared with open heart or other more difficult surgery but this is… my baby and just the thought that she will be under for 3 and a half hours was driving my crazy. I'm pretty sure you all know what I mean.....The surgery started at 2 p.m and was done about 5.30. The surgeon told us that everything went very well (they also had tubes put in her ears) but was surprised to find out that somehow we were never told that a was supposed to be weaned of the bottle before surgery. They told us when we had our assessment in August that we should introduce the sippy cup without the valve(which we did but she doesn't like) but they missed to mention

the bottle thing…. Because of this the surgeon figured that she will have a really hard time to get the fluids she needed by mouth and told us to expect to be in the hospital a couple more days on top of what they initially thought (Mon-Tue vs. Sunday). a was discharged less than …48 hours after surgery. She is my little miracle and had an outstanding "performance" when it came to fluid intake. We are using a syringe at it is working (although it takes us a while). She has no issues with the spoon and for the next 3 weeks we're back to stage 1 baby food. She also has to wear arm restrains (3-6 weeks) so she can't put anything in her mouth. She has a lot of stitches in her mouth but she doesn't seem to be bothered by them (she still takes pain killers). She is doing really well. You wouldn't even know that she had surgery 3 days ago. They all assumed that it will take her longer to

recover and she proved everybody wrong. She is pretty amazing little girl.Thank you again.AncaProud Mommy toAlyssa (Jun 2004)a (T21) and Tianna (Nov 2007)

[Guest guest]

Anca I'm so glad to hear a is having a speedy recovery from her surgery. And I know that any surgery is really something for our children to go through as well as the family.

and for Beth,

I will try to fine the article online that told about children with ds and pain. It isn't that they have a high pain tolerance, it is that the signal to the brain is delayed and that makes it appear that our children have a high tolerance to pain. It was interesting and I can see in that it is certainly true. Judy and Bob Parents to 29 yrs. the joy of our lives who happens to have ds and multiple disabilities and

To: Multiples-DS Sent: Tuesday, December 9, 2008 3:35:35 PMSubject: Re: Update on a's cleft palate surgery

A surgery is a surgery! Anything that puts your child out for that long can be heart wretching! I am happy to hear your amazing little girl is doing so well! When had open heart surgery at 5 months I think it was tougher on us then on was him! He came home like nothing every happened! I have heard that Down Syndrome children have a high pain tolerance!

Beth- Mom of and Landon 5yr. old identicals-DS

From: ansial2004 <ansial2004yahoo (DOT) com>Subject: Update on a's cleft palate surgeryTo: Multiples-DS@ yahoogroups. comDate: Sunday, December 7, 2008, 7:05 PM

Hello everybody,Thank you all for your prayers and thoughts. There is no doubt in my mind that they had a lot to do with a's speedy recovery.Thursday, Dec 4th was one of the toughest days of my life.... I know that her surgery cannot be compared with open heart or other more difficult surgery but this is… my baby and just the thought that she will be under for 3 and a half hours was driving my crazy. I'm pretty sure you all know what I mean.....The surgery started at 2 p.m and was done about 5.30. The surgeon told us that everything went very well (they also had tubes put in her ears) but was surprised to find out that somehow we were never told that a was supposed to be weaned of the bottle before surgery. They told us when we had our assessment in August that we should introduce the sippy cup without the valve(which we did but she doesn't like) but they missed to mention

the bottle thing…. Because of this the surgeon figured that she will have a really hard time to get the fluids she needed by mouth and told us to expect to be in the hospital a couple more days on top of what they initially thought (Mon-Tue vs. Sunday). a was discharged less than …48 hours after surgery. She is my little miracle and had an outstanding "performance" when it came to fluid intake. We are using a syringe at it is working (although it takes us a while). She has no issues with the spoon and for the next 3 weeks we're back to stage 1 baby food. She also has to wear arm restrains (3-6 weeks) so she can't put anything in her mouth. She has a lot of stitches in her mouth but she doesn't seem to be bothered by them (she still takes pain killers). She is doing really well. You wouldn't even know that she had surgery 3 days ago. They all assumed that it will take her longer to

recover and she proved everybody wrong. She is pretty amazing little girl.Thank you again.AncaProud Mommy toAlyssa (Jun 2004)a (T21) and Tianna (Nov 2007)

[Guest guest]

Judith-

That would be great if you can find that article-thanks for clarifying that for me! That does make sense what you said!

Beth

From: ansial2004 <ansial2004yahoo (DOT) com>Subject: Update on a's cleft palate surgeryTo: Multiples-DS@ yahoogroups. comDate: Sunday, December 7, 2008, 7:05 PM

Hello everybody,Thank you all for your prayers and thoughts. There is no doubt in my mind that they had a lot to do with a's speedy recovery.Thursday, Dec 4th was one of the toughest days of my life.... I know that her surgery cannot be compared with open heart or other more difficult surgery but this is… my baby and just the thought that she will be under for 3 and a half hours was driving my crazy. I'm pretty sure you all know what I mean.....The surgery started at 2 p.m and was done about 5.30. The surgeon told us that everything went very well (they also had tubes put in her ears) but was surprised to find out that somehow we were never told that a was supposed to be weaned of the bottle before surgery. They told us when we had our assessment in August that we should introduce the sippy cup without the valve(which we did but she doesn't like) but they missed to mention

the bottle thing…. Because of this the surgeon figured that she will have a really hard time to get the fluids she needed by mouth and told us to expect to be in the hospital a couple more days on top of what they initially thought (Mon-Tue vs. Sunday). a was discharged less than …48 hours after surgery. She is my little miracle and had an outstanding "performance" when it came to fluid intake. We are using a syringe at it is working (although it takes us a while). She has no issues with the spoon and for the next 3 weeks we're back to stage 1 baby food. She also has to wear arm restrains (3-6 weeks) so she can't put anything in her mouth. She has a lot of stitches in her mouth but she doesn't seem to be bothered by them (she still takes pain killers). She is doing really well. You wouldn't even know that she had surgery 3 days ago. They all assumed that it will take her longer to

recover and she proved everybody wrong. She is pretty amazing little girl.Thank you again.AncaProud Mommy toAlyssa (Jun 2004)a (T21) and Tianna (Nov 2007)

[Guest guest]

Anca, so glad to hear a is doing so very well. Merry Christmas to

your family!!!

Christie~ Indiana mom to (6) and the twins (17 months old now)

ph (T21) and

[Guest guest]

Beth here is one site on pain and persons with ds, although I can't remember if it was the same one I had read before.

http://www.ds-health.com/abst/a0103.htm

Here is another one I just found also.

http://www.docguide.com/news/content.nsf/news/BCF21BA13B921B57852569A8004F8414?OpenDocument & id=1A15FA105FBDB711852568720071566F & c=Pain & count=10

Hope these both open for you if not I will send them again.

Judy 's Mom

To: Multiples-DS Sent: Wednesday, December 10, 2008 5:40:26 AMSubject: Re: Update on a's cleft palate surgery

Judith-

That would be great if you can find that article-thanks for clarifying that for me! That does make sense what you said!

Beth

From: ansial2004 <ansial2004yahoo (DOT) com>Subject: Update on a's cleft palate surgeryTo: Multiples-DS@ yahoogroups. comDate: Sunday, December 7, 2008, 7:05 PM

Hello everybody,Thank you all for your prayers and thoughts. There is no doubt in my mind that they had a lot to do with a's speedy recovery.Thursday, Dec 4th was one of the toughest days of my life.... I know that her surgery cannot be compared with open heart or other more difficult surgery but this is… my baby and just the thought that she will be under for 3 and a half hours was driving my crazy. I'm pretty sure you all know what I mean.....The surgery started at 2 p.m and was done about 5.30. The surgeon told us that everything went very well (they also had tubes put in her ears) but was surprised to find out that somehow we were never told that a was supposed to be weaned of the bottle before surgery. They told us when we had our assessment in August that we should introduce the sippy cup without the valve(which we did but she doesn't like) but they missed to mention

the bottle thing…. Because of this the surgeon figured that she will have a really hard time to get the fluids she needed by mouth and told us to expect to be in the hospital a couple more days on top of what they initially thought (Mon-Tue vs. Sunday). a was discharged less than …48 hours after surgery. She is my little miracle and had an outstanding "performance" when it came to fluid intake. We are using a syringe at it is working (although it takes us a while). She has no issues with the spoon and for the next 3 weeks we're back to stage 1 baby food. She also has to wear arm restrains (3-6 weeks) so she can't put anything in her mouth. She has a lot of stitches in her mouth but she doesn't seem to be bothered by them (she still takes pain killers). She is doing really well. You wouldn't even know that she had surgery 3 days ago. They all assumed that it will take her longer to

recover and she proved everybody wrong. She is pretty amazing little girl.Thank you again.AncaProud Mommy toAlyssa (Jun 2004)a (T21) and Tianna (Nov 2007)