October 11-18, 2008 Eastern Magic-Parrothead Pirates in Paradise! Chapter # 3

[3Goofballs]

We are working on it... the problem is his gut just does not work very well. I have gauze that I keep taped over the area to try to absorb the ooze, and that helps some. Sometimes though it just gets OUT of control... Next time we see the surgeon I am thinking maybe we need to go up a size to see if that helps any. We shall see!

Trying to decide on a back surgery for him too, if we do it, when we do it, that kind of thing. Thinking he may be able to go to a special camp this summer too, and I dont want to mess that up for him, or the CRUISE either, but if we put it off too long then we may not be able to do it at all. AHHHHH!!! Wish I had someone skywriting for me to let me know what is the right thing to do!

You will do the right thing, no matter what you decide! It always comes down to mom's intuition.

Where do you live? That's great about sending Sean to camp.

I know here in N.C. we have the Victory Junction Gang Camp, which is affiliated with Paul Newman's Hole in the Wall Gang Camps that are located all over the U.S. The camps are especially for kids like yours and mine. We hope when DD6 Megan gets a little older, she will be able to attend for at least a weekend (Down syndrome, congenital heart disease). Have heard wonderful things from other parents. Don't know if WE will be able to "let her go" to camp though!

Renee

 

[pinkygirl]

I didn't get any minutes...

BUT... I DO get to have the bathtub to myself for as long as I want tomorrow once Sean goes to his friend's house! AND the TV too!

that sounds heavenly!!!!! for me everytime I hop in the bathtub, one of the kids always come in asking for something!!! LOL hope you enjoy your time alone tomorrow

 

[Pinkgurlshubby]

Thats the problem! LOL! This surgeon is the one who suggested it... the ortho surgeon (who doesn't know Sean as well) thinks we should not do it. Doing the surgery will help his pain issues, but WILL cause him some backsliding on his oxygen requirements for a while. It should improve back to where he is now, or maybe even a little better if the pain is better controlled, but its hard to see him go backwards for a year or two...

Tough decisions What's a mom to do? The sad part is this might be harder on you than him.

 

[cdhheidi]

Thanks. I am sure that whatever ends up happening it will be for the best! Life on the edge... thats what makes trips like this cruise so special though... LIVING LIFE TO THE FULLEST!

 

[pinkygirl]

It was heaven..But, it was free massage. I found this deal on the budget boards a while back from Walgreens you had to buy so many cough drops, etc from Robitussin. I did and sent in the paper work for my mom and I and we each got one hundred dollars to a local spa. I actually got two hundred. Needless, to say we have a lot of cough drops now...LOL!!!!!!!!!!! But, heck the eighteen dollars I spent on cough drops got us three hundred dollars for the spa!!!!!!!!!!!!!!!

well that sounds like a great deal to me!!!!!!! and plus your all stocked up for the next time you get a cold too LOL

 

[pinkygirl]

Thanks. He is a trooper most of the time... has his own way of letting people know what he thinks of them (ROFL! When he was in the hospital a year ago he had this poster on his door, with a big foot drawn on it... doctors names were written UNDER the big foot, and a tornado with nurses names flying out of it. Then the GOOD people were in the clouds over it all... LOL! He is a riot for sure!

LOL sounds like a funny boy!!!

 

[cdhheidi]

You will do the right thing, no matter what you decide! It always comes down to mom's intuition.

Where do you live? That's great about sending Sean to camp.

I know here in N.C. we have the Victory Junction Gang Camp, which is affiliated with Paul Newman's Hole in the Wall Gang Camps that are located all over the U.S. The camps are especially for kids like yours and mine. We hope when DD6 Megan gets a little older, she will be able to attend for at least a weekend (Down syndrome, congenital heart disease). Have heard wonderful things from other parents. Don't know if WE will be able to "let her go" to camp though!

Renee

We live near Boise IDaho, this will be the first year for this camp, but the volunteers are nurses and RT's that we know and know Sean well, which is a good thing!

I have heard WONDERFUL things about Victory Junction... some of my friends kids have been more than once and just love it. Have you looked into the family weekends there? That way you dont have to let her go, you can get comfortable with it as a family. I have heard the family weekends are really great too....

There iS another new camp opening up near Seattle this summer, but they are only doing facial differences this first year. It is supposed to be associated with the Paul Newman camps as well... we shall see what the future brings!

 

[pinkygirl]

You are too funny!!!!

I thought you might like that little funny

 

[cdhheidi]

that sounds heavenly!!!!! for me everytime I hop in the bathtub, one of the kids always come in asking for something!!! LOL hope you enjoy your time alone tomorrow

No doubt about it. I have a good book waiting, lots of lavender bath salts, and some munchies too.

 

[RanCan]

I thought you might like that little funny

I can always count on you to make me laugh Nancy!!!!

 

[kritter]

Oh, gosh look what I miss I go and brush my teeth and you all post a whole page...


Maybe, I can get Bruce to post sometime soon. He is on computers all day so he wants nothing to do with it at home..

Sorry, all tired off to bed. I promise I'll be more fun tomorrow!!!!!!!!!!!!!!!!

 

[cdhheidi]

Nighty night!! Sleep well!

 

[Pinkgurlshubby]

Oh, gosh look what I miss I go and brush my teeth and you all post a whole page...


Maybe, I can get Bruce to post sometime soon. He is on computers all day so he wants nothing to do with it at home..

Sorry, all tired off to bed. I promise I'll be more fun tomorrow!!!!!!!!!!!!!!!!

nighty night Kristin. Take your time tomorrow, have a good day

 

[pinkygirl]

Thats the problem! LOL! This surgeon is the one who suggested it... the ortho surgeon (who doesn't know Sean as well) thinks we should not do it. Doing the surgery will help his pain issues, but WILL cause him some backsliding on his oxygen requirements for a while. It should improve back to where he is now, or maybe even a little better if the pain is better controlled, but its hard to see him go backwards for a year or two...

it always amazes me to see children going through these things to see how strong they are....your little guy sounds like a real trooper!!! bless his heart

 

[RanCan]

Oh, gosh look what I miss I go and brush my teeth and you all post a whole page...


Maybe, I can get Bruce to post sometime soon. He is on computers all day so he wants nothing to do with it at home..

Sorry, all tired off to bed. I promise I'll be more fun tomorrow!!!!!!!!!!!!!!!!

Have a good night Kristin!!!

After my snow day tomorrow....I might not be any fun!!

 

[pinkygirl]

We don't mind at all.......Come join us Bruce!!!

I bet the other guys would really love it if he started posting!!!
Although they might start ganging up on us!!!

oh we can't let that happen!!!!!

 

[pinkygirl]

No doubt about it. I have a good book waiting, lots of lavender bath salts, and some munchies too.

well that sounds really relaxing!!! I love bath salts too

 

[RanCan]

oh we can't let that happen!!!!!

No.....we will never let that happen!!

 

[pinkygirl]

I can always count on you to make me laugh Nancy!!!!

LOL you're welcome Candy...anytime you need a laugh let me know!

 

[cdhheidi]

I have a collection! LOL! The boys know my need for tub time (I HAVE to have an hour each week ALONE) so they always give me various kinds of bath salts for Christmas and Mother's Day. Sweet children know the way to a moms heart!