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  #31  
Old 04-29-2011, 12:06 PM
missy missy is offline
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Oh, bless her heart!

Allergens are bad everywhere this year and I know that doesn't help! It seems they are getting worse and worse every year.

Let us know what the ENT says about taking them out.

MIssy
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  #32  
Old 06-03-2011, 04:53 PM
abatie abatie is offline
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We will be heading back to Mayo next week. Becca needs to see her cardiologist for her yearly checkup. She has been having some complications. In April she was diagnosed with asthma but now we are starting to second guess the diagnosis. Since then she has been having a very fluid-like sound when she breaths. We also hear this when she starts breathing heavy and she cries and gets upset in her carseat. She has even more trouble when she lays down and wakes up and sits or stands in the middle of the night (from what I have read this is because the fluid is worse when laying down). She has also started rolling up blankets and then laying down while on her knees. We are guessing that she is starting to have some fluid buildup in her lungs due to her heart. This would make sense since she has had such a tough winter with infections, has gained no weight since September (she is now below the 5th percentile), is very pale, and is having some discoloration and water retention in both her hands and feet. We are now only scheduled for a chest x-ray and an appointment. I would guess that if Dr. Eidem has concerns he may have us stay so that another echo can be done (she isn't supposed to have another until next summer). We are concerned because they don't want to have to do surgery until she is bigger and we have my surgery coming up soon. Hopefully all will turn out!
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  #33  
Old 06-04-2011, 01:21 PM
missy missy is offline
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I hope so too! She certainly is a little fighter.

Your surgery is coming up soon, isn't it? Did you get the logistics worked out? Will your mother be able to go with you?

Missy
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  #34  
Old 06-04-2011, 02:00 PM
abatie abatie is offline
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My mom and cousin are coming to stay with the kids. We have been working on all of the planning and writing detailed meds schedules. We have also been working with our oldest son on how to take is meds. He is learning the schedules for himself and he is also getting good at being able to know what Becca needs. Also, I am preparing all of the meals or for simple meals I have purchased all of the groceries so that there isn't a chance of Anna getting products that she is allergic to. Becca's allergies are eggs and peanut butter so I have avoided anything with these so that she isn't affected. Also, we will do a really good job of cleaning with Becca's cleaning supplies before we leave. I have also told my mom in no uncertain terms to not use any cleaning supplies outside of my one cabinet and that she can't stray from the planned menu. She said something about taking them out for supper one night and I said no because there are so many products containing sunflower oil that Anna would have problems. We have also decided that we are going to learn how to do Skype before we leave so that Dale can Skype home while we are in Omaha. We will set one of our work computers up at home with a webcam and then we will take out home computer with us. My 19 year old cousin will be here to work the computer for the kids and it may also allow Dale to do morning and evening meds with them. I think this will help. I am still nervous about leaving them but my mom seems to be taking this more seriously now. I think she realized how careful she needs to be about checking labels because when we went to her house for Easter there were two or three items that my mom had for meals that all contained sunflower oil and she felt bad that Anna couldn't have it. She started off saying she didn't want us to cook ahead of time but now she is realizing that it will be easier for her because she won't have to be scared that she will eat something that may cause a reaction.
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  #35  
Old 06-05-2011, 12:12 AM
missy missy is offline
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It's hard, isn't it? We're about to go on vacation with our kids, both are allergic to gluten, dairy, and soy. I have to try and find things that I can take, but don't need to be refrigerated. There are just too many people going to be sure we'll have room for our food in there.

I'm glad you reminded me. I have to go cooler shopping.

Nice for you that the logistics are coming together. And good idea about Skype ... I might do the same, since we are leaving dad at home. He'll be fine, but the cats will get lonely.

Missy
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  #36  
Old 06-05-2011, 01:17 AM
abatie abatie is offline
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We were excited that we found bags of applesauce to take with that you can just squirt out. When we go to Mayo this week we were trying to figure out how we were going to give Becca one of her medications. We have to cut the capsule open, empty the contents on a spoon with applesauce, and then have her swallow (it doesn't come in a liquid or meltable form). I had never seen such a thing but it will be great on Tuesday night at the hotel.

Glad I reminded you about the cooler. Have a great vacation and I hope the cats doesn't get too lonely!!!
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  #37  
Old 06-09-2011, 10:26 PM
abatie abatie is offline
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We are home! So many of you can relate to that feeling I am sure. Becca had a very good report but it left us with more questions. He complications are not being caused by her heart and her heart is exactly the same size as a year ago with very clear lungs. The cardiologist is sure e complications are not heart related but he doesn't know what is causing it. He wants us to go back to the allergist and discuss the Mayo rsults and then keep him in the loop. If we can't figure something out close to home he will help us find someone at Mayo to give us answers. He did make an interesting suggestion that it could be a vascular complication in some way. Although this is intriging to me I have done a ton of CMTC research and have never heard of anything like this. I just have a hard time believing that I would have missed this if there was anything on it because I have read everything I can find forward and back. We will keep searching for some answers. She had a rough night while in Rochester and I sat up with her most of the night. She also reallystruggled to breathe in the car seat while gone.
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  #38  
Old 06-09-2011, 11:15 PM
missy missy is offline
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What is the next step then? The allergist, I guess. Is he the one who diagnosed her with asthma?

That leaves me with lots of questions, too. I hope you find some answers soon.

Missy
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  #39  
Old 06-10-2011, 01:24 AM
abatie abatie is offline
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Missy-
Yes our next step will be back to the allergist. We already had another appointment scheduled there in two weeks so we will go then rather than try to move it up. I really don't know what he is going to say because when we were there with our other daughter on Monday he was convinced that it was a heart issue. It will be interesting as I have no idea what to think now but I do know that I need to have her breathing better and I am really not sure who else to turn to for answers. I am considering a vascular specialist if we don't get anywhere with the allergist. At this point we haven't seen a vascular specialist (odd considering the CMTC) but I really have no idea if that specialty will be any help. Any ideas???
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