Thursday, January 31, 2008

Update for Jan 31

Emma is not going to her tummy dr appointment today. She needs to have the sore under her mickey button looked at but its snowing and cold and she has had to go back on a little oxygen this morning, after doing well off of it the majority of the last 2 days.

She has broken out in a rash, its fifth disease just like brother and me had a few weeks ago. Yes, even Mommy got it! So that explanis her cold like symptoms the last 2 weeks or so. Cold like respitory issues can be the early signs of fifth disease. Then you get the rash. Once you have the rash you are no longer able to pass it on to other people. So I guess that means she is getting better. She doesn't seemed bothered by it. That is good because mine itched so bad, Derek had no issues at all with his. Just the rash, no itch no pain fever nothing. I am hoping Emma stays itch free.

So its off to watch the news to see more about this snow business. I am hoping we get enough for a snowman this time. Not just for the kids but for me! I love snowmen. Thanks all for keeping Emma in your thoughts and prayers

Tuesday, January 29, 2008

Quick update

Sorry I haven't updated on Emma's cold like I said I would. When you have a child who is sick, its just not that realistic to hop online to write! She has been keeping me busy and I have had very little sleep this week. She is getting well I think.

She has spent most of the day off of her oxygen, and is awake more. That said tonight will be the true test, night times are the hardest for her. I am hoping she will be well enough to go to physical therapy on Thur, and she also has a tummy dr appt on Thur afternoon she can not miss, they are looking at a spot she has under her mickey button. Its a little irrated tissue that needs to be taken care of. Very common with mickey buttons.

Short update, and I am sorry for that but its time to get ready for bed.

Monday, January 21, 2008

Icky Sicky Girl

Well the last few days Emma has been really gunky. She started using oxygen last night, which she has not done in over 2 years. Except of course the last time she was sick which was 17 months ago.

Last night I suctioned her atleast 10 times, because I went through a whole bag of suction caths. We normally suction 1 time a week. She used oxygen ranging from .5 to 2.5 lit. through out the night. Now for those of you who don't know about oxygen that isn't a whole lot but its a lot for her. So this morning I called an ambulance, which is how we always go to the hospital since we don't have a car, and it means not having to wait in a waiting room too!

I packed like we would be staying for a week. We ALWAYS stay when she gets sick like she was. But guess what? The chest xray was clear! They did a culture and it didnt show any immediate signs of icky stuff, but they are still watching it, and they did an RSV test but not the rapid kind, they really felt it wasn't RSV. Their verdict : a common cold. Never in my life have I been more glad that one of my kids had a cold. We got to come home, a little bruised up from iv pokes, that was unneeded anyway, and using no oxygen but she is now on .5 lt.

What is weird is as soon as we got there she didn't require oxygen anymore. Isn't that they way it always is? Plus I changed her vent circuit while there and told the nurse she would have to bag her and guess what? She went from 95 sats to 100 with no bagging or vent at all. Crazy huh?

We just have to keep an eye on her and expect some oxygen use until she is all well. She doesn't mind her "o's" though it makes her oxygen levels much happier. I am sure we are going to be in for a few more rough days until she beats this, so kindly remember us in your prayers if you please. I will update you all atleast daily until she is well.

Wednesday, January 16, 2008

A special video for Emma, love Mommy

A video I did for Emma, yes I know there is one typo that I need to go back and fix. I hope all of you like it.

Mommy and Emma

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Monday, January 14, 2008

Small Prayer Request

Just a little prayer request for everyone. Emma's brother Derek has come down with something called Fifth Disease, its really common just a rash and maybe fever, slight itching and joint pain. Derek is having no issues other than the rash, his face looks like someone slapped it! Well guess what? I was feeling funny and looked in the mirror and I have it too. Yes Mommy is all broken out! I itch and feel like my face is on fire. Once the rash is here then you can't make someone else sick with it, so Derek is good to go back to school and I can go out. But the girls I am hoping won't have picked up our germs from last week when we were able to spread it around.

My prayer request is that Emma and her twin sister Ella do not get it. I don't think it would be a major deal for Emma to get, health wise but since she can't speak words it would be hard for her to tell me if she itched or was in pain. So please say a prayer that 2 red faced people in the house will be all we have.

Saturday, January 05, 2008

Sorry there has been no update in a while. The holidays had us pretty busy. Emma is doing very well, the healthiest she has ever been, not having been sick or hospitalized in 15 months! 2007 was great to us.

Over the holiday we took Emma to my Mom's for the very first time. We rode the local lift bus and it was a solution to the transportation issue we had in getting her to my mom's. Mom has a small car, we have no car, Emma has too much stuff! LOL She had fun, we looked at the Christmas tree, Emma watched Mommy, Poppy, Nanny, Derek and Ella eat pizza, but I was sure to give her a napkin like the rest of us so she woudln't feel too left out. She liked the Christmas songs they played. We went to the park and Emma liked the outside. I even helped her pop wheelies in her wheelchair!

Christmas was good, she got lots of toys and clothes, just like her brother and sister. I think her fave thing is her new bear that lights up. Its a Glo-e bear and I suggest it for any child, especially those with disabilities, its very neat to watch and its a soft, very graduale light change so its not likely to cause seizures. She also likes her tickle me elmo. Her Nanny and Poppy got her earrings and in about a week we can take the first set she got put in out and try all kinds of new ones.

I posted some pics from the trip to my mom's above, hope you enjoy. And HAPPY NEW YEAR to everyone.

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