Current words she's saying
Mama
Daddy
Ellie
Sissy
Exis (Alexis - said twice so far)
Ba (ball)
Baby
Cah (car)
Uh-oh
Hi
Hello
Pretty (will sometimes repeat thus after you say it)
Ducky
Kitty
Baa (sheep sound - copying you)
Doll (said a few times)
Bah (bottle - repeated a few times)
Peep-eye
Eye
Ear
No (nose)
Mou (mouth)
Mimi (Memaw - Grandma)
Bye-bye
Beep
Bacpac (backpack - from Dora)
This
There may be a few more words but I can't think of them right now.
She can point to the following body parts when she is in the mood-
Eye, ear, nose, mouth, tongue, hair, head, belly, foot
She's walking very good now. She'll occasionally sit for a story read to her.
She knows how to turn the girls' old Leapster games on and get into the game but hasn't figured out how to play the games yet. She can turn on and off some of her toys.
She can blow kisses and wave bye-bye when she is in the mood.
Tuesday, February 26, 2013
Mini rant
I'm not sure if I'll be able to write this without sounding rude/crude or offending someone. Probably not, but it is my rant/vent so here goes.
I'm so tired of seeing posts, etc., of disease 'xyz' kills more people than disease 'abc' 'def' 'chi' put together. It doesn't matter how many more or less people a disease kills, it still kills them. Just because your friend, family member, etc. suffered from the 'xyz' doesn't make the other diseases any less important. It doesn't make the heartache of the people who know someone who died from the other diseases any less or the suffering of a person who has one of the other diseases less. Personally I would feel worse, because it makes it seem like people think that the person was less important than the person who has/had the other disease(s) was less important than the one who has/had 'xyz' disease.
This affects me a lot since Olivia has cystic fibrosis. CF is still considered to be a 'rare' disease. So, yes, not as many people die from it because not as many people have it. However, it is considered a terminal disease. She will NOT be 'cured' of it, nor will she ever have a 'remission' from it. It will always be there. And she may not die in 'childhood' but her life expectancy is only about 35 years old. So chances are that I will outlive my child.
HER DISEASE IS JUST IMPORTANT AS ANY OTHER DISEASE AND SHOULD NOT BE LISTED AS AN EXAMPLE OF A DISEASE THAT KILLS LESS PEOPLE THUS MAKING IT LESS IMPORTANT TO TRY AND CURE!! Nor should any other disease be listed in that fashion.
I'm not trying to be insensitive to those who have had to deal with 'xyz' disease. I do sympathize with their passion to find a cure for their disease and what they have had to go through. However, I think it is terribly insensitive of them to post things that make it seem that one disease is more important than another. I don't think they are purposely trying to be insensitive. I think they just aren't thinking about how people who have to deal with the other diseases that they are listing feel.
I hope that makes sense. And I was trying to be sensitive by not listing any specific diseases except for my daughter's.
I'm so tired of seeing posts, etc., of disease 'xyz' kills more people than disease 'abc' 'def' 'chi' put together. It doesn't matter how many more or less people a disease kills, it still kills them. Just because your friend, family member, etc. suffered from the 'xyz' doesn't make the other diseases any less important. It doesn't make the heartache of the people who know someone who died from the other diseases any less or the suffering of a person who has one of the other diseases less. Personally I would feel worse, because it makes it seem like people think that the person was less important than the person who has/had the other disease(s) was less important than the one who has/had 'xyz' disease.
This affects me a lot since Olivia has cystic fibrosis. CF is still considered to be a 'rare' disease. So, yes, not as many people die from it because not as many people have it. However, it is considered a terminal disease. She will NOT be 'cured' of it, nor will she ever have a 'remission' from it. It will always be there. And she may not die in 'childhood' but her life expectancy is only about 35 years old. So chances are that I will outlive my child.
HER DISEASE IS JUST IMPORTANT AS ANY OTHER DISEASE AND SHOULD NOT BE LISTED AS AN EXAMPLE OF A DISEASE THAT KILLS LESS PEOPLE THUS MAKING IT LESS IMPORTANT TO TRY AND CURE!! Nor should any other disease be listed in that fashion.
I'm not trying to be insensitive to those who have had to deal with 'xyz' disease. I do sympathize with their passion to find a cure for their disease and what they have had to go through. However, I think it is terribly insensitive of them to post things that make it seem that one disease is more important than another. I don't think they are purposely trying to be insensitive. I think they just aren't thinking about how people who have to deal with the other diseases that they are listing feel.
I hope that makes sense. And I was trying to be sensitive by not listing any specific diseases except for my daughter's.
CF clinic visits for Jan 30 and Feb 20
Since I'm usually in the living room with Olivia, I don't get in the computer very often and it's hard to type on the iPod thus the reason I've gotten behind on updates.
So for the Jan. 30 visit, we met with a doc we've only met once. Before this visit, we were trying the removal of the daytime NG feeds but keeping the overnight feeds. Since she wasn't taking as much as they would like orally, they decided to put the day feeds back. Which to us was a bit confusing. She had gained weight but no height so the percentage between ht/wt would have been higher. Plus the doc gave us a percentage that was ONLY her weight % which was not what we had asked. We, of course, had asked the % ht/wt. The doc wanted us to come back in 2 weeks, hubs wanted 1 month, it was finally settled on 3 weeks.
Last week's visit (2-20) I was worried about because Olivia had a tummy bug the week before the visit. Thanks older sister Ellie for sharing your tummy bug =\. LOL. Olivia lost some weight (about 1 lb) during the tummy bug and I wasn't sure if she had gained it back yet. She had gained it back and weighed a *whopping* .04 kg more than our previous visit. The PA (our normal provider) was ok with her weight but you could tell she wasn't terribly pleased with it. *rolleyes* Olivia had also developed a slight cough from drainage. I'm pretty sure having vomit come out your nasal passages will irritate it enough to cause so drainage. They weren't worried about it since it wasn't in her chest. She also had a little fluid in her ears but no infection. Pretty sure that was caused by the drainage/vomiting.
They said they would consider a slow removal of day feeds at the next clinic visit if she shows good gain. Since the tummy bug she has pretty much completely quit eating orally so I'm not sure how we're going to get her to eat again. /sigh
I think that pretty much covers her clinic visits.
So for the Jan. 30 visit, we met with a doc we've only met once. Before this visit, we were trying the removal of the daytime NG feeds but keeping the overnight feeds. Since she wasn't taking as much as they would like orally, they decided to put the day feeds back. Which to us was a bit confusing. She had gained weight but no height so the percentage between ht/wt would have been higher. Plus the doc gave us a percentage that was ONLY her weight % which was not what we had asked. We, of course, had asked the % ht/wt. The doc wanted us to come back in 2 weeks, hubs wanted 1 month, it was finally settled on 3 weeks.
Last week's visit (2-20) I was worried about because Olivia had a tummy bug the week before the visit. Thanks older sister Ellie for sharing your tummy bug =\. LOL. Olivia lost some weight (about 1 lb) during the tummy bug and I wasn't sure if she had gained it back yet. She had gained it back and weighed a *whopping* .04 kg more than our previous visit. The PA (our normal provider) was ok with her weight but you could tell she wasn't terribly pleased with it. *rolleyes* Olivia had also developed a slight cough from drainage. I'm pretty sure having vomit come out your nasal passages will irritate it enough to cause so drainage. They weren't worried about it since it wasn't in her chest. She also had a little fluid in her ears but no infection. Pretty sure that was caused by the drainage/vomiting.
They said they would consider a slow removal of day feeds at the next clinic visit if she shows good gain. Since the tummy bug she has pretty much completely quit eating orally so I'm not sure how we're going to get her to eat again. /sigh
I think that pretty much covers her clinic visits.
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