Comments on: Storm Clouds http://www.beautifulcanvas.org/2009/06/storm-clouds/ God is working on the canvas of our lives to bring Him glory! - NPM Thu, 09 Feb 2012 22:37:43 +0000 hourly 1 By: Lana © http://www.beautifulcanvas.org/2009/06/storm-clouds/comment-page-1/#comment-2318 Lana © Fri, 12 Jun 2009 13:06:26 +0000 http://www.beautifulcanvas.org/?p=3982#comment-2318 Hi Karen, Carmen is actually fine right now. I didn't go to the Mani/Pedi because I was so exhausted. AC in our bedroom isn't working so we haven't been sleeping well. I went to bed early last night. The adapter to her g-tube that fell off isn't connected to anything but the end of her tube so I don't think that had anything to do with her fever! See you later! Hi Karen,

Carmen is actually fine right now. I didn’t go to the Mani/Pedi because I was so exhausted. AC in our bedroom isn’t working so we haven’t been sleeping well. I went to bed early last night.

The adapter to her g-tube that fell off isn’t connected to anything but the end of her tube so I don’t think that had anything to do with her fever!

See you later!

]]> By: Karen in MD http://www.beautifulcanvas.org/2009/06/storm-clouds/comment-page-1/#comment-2315 Karen in MD Fri, 12 Jun 2009 01:56:46 +0000 http://www.beautifulcanvas.org/?p=3982#comment-2315 Ahhh, that's why you didn't go to Mani/ Pedi night. I hope Miss Carmen feels better soon. Do you think because her thingy feel off the other day? Ahhh, that’s why you didn’t go to Mani/ Pedi night. I hope Miss Carmen feels better soon. Do you think because her thingy feel off the other day?

]]> By: Lana http://www.beautifulcanvas.org/2009/06/storm-clouds/comment-page-1/#comment-2314 Lana Thu, 11 Jun 2009 15:29:54 +0000 http://www.beautifulcanvas.org/?p=3982#comment-2314 Hi Nancy, I talked to Carmen's new pulmonologist about the oxygen and he didn't seem to think there would be a problem taking Carmen on and off the oxygen. I had another doctor talk about oxygen dependency but he wasn't a pulmonologist and I am not convinced knew what he was talking about. We are going to take Carmen off and monitor her and see how it goes. I think she will be fine but if she seems at all uncomfortable, we will put her right back on! Yes, we are still giving Carmen antibiotics when needed. We feel really good about that as they seem to make her so much more comfortable. Yes, she gets a new scop patch every 48 hours. I asked around and that seems to be what all the other children with Tay Sachs get too. I cannot imagine changing every 5 days! If I forget and Carmen goes 72 hours, she is choking and drooling all over the place. Don't let the doctor give you a hard time!!! :) No, we aren't worried about fluid retention. She swells up sometimes but the swelling doesn't seem to affect her. We weigh her diapers and what goes in comes back out! Carmen gets a lot of water. She is fed overnight (formula plus water) and then gets water during the day. Total about 1000ml fluid per day. Hope this helps! Hi Nancy,

I talked to Carmen’s new pulmonologist about the oxygen and he didn’t seem to think there would be a problem taking Carmen on and off the oxygen. I had another doctor talk about oxygen dependency but he wasn’t a pulmonologist and I am not convinced knew what he was talking about. We are going to take Carmen off and monitor her and see how it goes. I think she will be fine but if she seems at all uncomfortable, we will put her right back on!

Yes, we are still giving Carmen antibiotics when needed. We feel really good about that as they seem to make her so much more comfortable.

Yes, she gets a new scop patch every 48 hours. I asked around and that seems to be what all the other children with Tay Sachs get too. I cannot imagine changing every 5 days! If I forget and Carmen goes 72 hours, she is choking and drooling all over the place. Don’t let the doctor give you a hard time!!! :)

No, we aren’t worried about fluid retention. She swells up sometimes but the swelling doesn’t seem to affect her. We weigh her diapers and what goes in comes back out! Carmen gets a lot of water. She is fed overnight (formula plus water) and then gets water during the day. Total about 1000ml fluid per day.

Hope this helps!

]]> By: nancy http://www.beautifulcanvas.org/2009/06/storm-clouds/comment-page-1/#comment-2312 nancy Thu, 11 Jun 2009 05:19:54 +0000 http://www.beautifulcanvas.org/?p=3982#comment-2312 Beautiful picture! wow. You have a great eye. Thanks for your birthday wishes for Ryan - three years - wow! I was wondering about the oxygen. Some say they get dependent on it and then won't breathe deep anymore. I think he seems more comfortable on it even if his stats are good - what do you think? Will you put Carmen on antibiotics? She has a new scop patch every 48 hours, right? Ryan's order is every five days, which is not good enough, but the Dr. is giving me a hard time. You don't worry about the fluid retention, because you give her plenty of H2O during the night, right? We'll have to talk. When does Carmen turn 3? Nan Beautiful picture! wow. You have a great eye. Thanks for your birthday wishes for Ryan – three years – wow! I was wondering about the oxygen. Some say they get dependent on it and then won’t breathe deep anymore. I think he seems more comfortable on it even if his stats are good – what do you think? Will you put Carmen on antibiotics? She has a new scop patch every 48 hours, right? Ryan’s order is every five days, which is not good enough, but the Dr. is giving me a hard time. You don’t worry about the fluid retention, because you give her plenty of H2O during the night, right? We’ll have to talk. When does Carmen turn 3? Nan

]]> By: Aunt Trish http://www.beautifulcanvas.org/2009/06/storm-clouds/comment-page-1/#comment-2309 Aunt Trish Wed, 10 Jun 2009 19:42:42 +0000 http://www.beautifulcanvas.org/?p=3982#comment-2309 We've had tons of storms here as well. Big, looming clouds that look scary...even had a tornado in the area on Sunday. The nurse took Grandma to the basement while we were in church, not sure how that was accomplished, but she did it!!! There has been constant rain, at least constant for us - some every day for the past 3 weeks. It's actually GREEN, really truly green, the greenest I've ever seen Colorado, it's amazing. It reminds me of back East. I'm sorry that Carmen is sick again. It does seem strange that she is sick in the summer rather than winter...maybe it is triggered by seasonal allergies that might be causing cold or cold-like symptoms that make is harder for Carmen's body to fight. They might be masked because of the Tay Sachs?....just a thought. Samaiah's allergies caused all kinds of colds and sickness for her. Sending love across the miles, Trish We’ve had tons of storms here as well. Big, looming clouds that look scary…even had a tornado in the area on Sunday. The nurse took Grandma to the basement while we were in church, not sure how that was accomplished, but she did it!!!

There has been constant rain, at least constant for us – some every day for the past 3 weeks. It’s actually GREEN, really truly green, the greenest I’ve ever seen Colorado, it’s amazing. It reminds me of back East.

I’m sorry that Carmen is sick again. It does seem strange that she is sick in the summer rather than winter…maybe it is triggered by seasonal allergies that might be causing cold or cold-like symptoms that make is harder for Carmen’s body to fight. They might be masked because of the Tay Sachs?….just a thought. Samaiah’s allergies caused all kinds of colds and sickness for her.

Sending love across the miles,
Trish

]]> By: New York Grandma http://www.beautifulcanvas.org/2009/06/storm-clouds/comment-page-1/#comment-2308 New York Grandma Wed, 10 Jun 2009 18:36:40 +0000 http://www.beautifulcanvas.org/?p=3982#comment-2308 We not only had thunderstorms yesterday, we had hail!! Haven't looked at a weather report lately but I am guessing the entire east coast is getting wet!? We not only had thunderstorms yesterday, we had hail!! Haven’t looked at a weather report lately but I am guessing the entire east coast is getting wet!?

]]> By: Joe Jordan http://www.beautifulcanvas.org/2009/06/storm-clouds/comment-page-1/#comment-2307 Joe Jordan Wed, 10 Jun 2009 16:08:00 +0000 http://www.beautifulcanvas.org/?p=3982#comment-2307 Hi Lana, My son and I sat on our porch yesterday watching the storm just south of us, I was hoping for some rain but I guess you got it all. The lightning was cool. I hope Carmen feels better soon. God bless. In Christ, Joe Hi Lana, My son and I sat on our porch yesterday watching the storm just south of us, I was hoping for some rain but I guess you got it all. The lightning was cool. I hope Carmen feels better soon. God bless. In Christ, Joe

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