She's 4 today!

camily

camily

Peace
For those of you familiar with Celie's story, this is a big day for a little sprout. Four years old today! And a whole 28lbs. :lol:
 
camily

camily

Peace
sanchezf said:
For those of us not familiar with Celie's Story, would you care to share?
Click to expand...

She has a very rare kidney disease called Renal Tubular Acidosis. It affects about 1 in 10,000. This is supposedly resolved but she still does not grow. Gaining weight is a HUGE struggle for her. She goes to Children's frequently but no one can seem to figure out why she does not gain. They are now saying that she has a malabsorption problem. That she doesn't absorb nutrients, especially fat. This is particularly agonizing as we have been told since she was about a year old (and only 12lbs.) to feed her ice cream 3x's a day if she wants and to add butter to everything she eats. Make everything as fattening as possible. So....in turn, she does not eat anything healthy unless I sneak it into food. Now we find out the food we have been pushing on her per doctors orders may be the worst thing for her. I asked the doctors about this teaching her terrible eating habits a long time ago and they told me not to worry about it, that it was more important to get weight on her. Now my fears are reality. Developemantaly she is great. Size wise, she wears 24months-2T if we're lucky. The problem is, they are too short for her. She used an adjustable dog collar as a belt foreverbecause they don't make belts for babies. :lol:
 
bohman

bohman

Well-Known Member
camily said:
For those of you familiar with Celie's story, this is a big day for a little sprout. Four years old today! And a whole 28lbs. :lol:
Click to expand...

I hope she keeps getting better. Sometimes I'm tempted to think that my little girl is too small (26lbs @ 2 years) but I guess not, huh? Good luck with the medical stuff. Ever talk to anyone at A.I. DuPont Childrens' Hospital? My nephew is there frequently (complications from spina bifida) and they are knowledgable about a lot of issues.
 
camily

camily

Peace
bohman said:
I hope she keeps getting better. Sometimes I'm tempted to think that my little girl is too small (26lbs @ 2 years) but I guess not, huh? Good luck with the medical stuff. Ever talk to anyone at A.I. DuPont Childrens' Hospital? My nephew is there frequently (complications from spina bifida) and they are knowledgable about a lot of issues.
Click to expand...

No never heard of them. Where are they?
 
SoMDGirl42

SoMDGirl42

Well-Known Member
camily said:
For those of you familiar with Celie's story, this is a big day for a little sprout. Four years old today! And a whole 28lbs. :lol:
Click to expand...

:banana: :party: :thewave: :bday:

Happy Birthday Celie! Big things come in small packages. Hope you have a happy, healthy year.
 
camily

camily

Peace
She is wearing one rain boot, one plastic princess shoe, a Carmen Miranda dress and a foam tiara. She's calling it her special birthday outfit.:killingme
 
terbear1225

terbear1225

Well-Known Member
camily said:
No never heard of them. Where are they?
Click to expand...

in delaware. kind of a long drive, but if they can help, it's worth it. I'd certainly make the trip if the current docs aren't finding a solution.

Here's the website:
HTML: 
http://www.nemours.org/hospital/de/aidhc.html

there's even a link on how to make an appointment.
 
camily

camily

Peace
terbear1225 said:
in delaware. kind of a long drive, but if they can help, it's worth it. I'd certainly make the trip if the current docs aren't finding a solution.

Here's the website:
HTML: 
http://www.nemours.org/hospital/de/aidhc.html

there's even a link on how to make an appointment.
Click to expand...

For real. Delaware isn't that far.
 
camily

camily

Peace
Taken from my phone so it's not the greatest.
She opted for the same shoes, dumping the rain boot.
 

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sanchezf

sanchezf

Little ol' Me
camily said:
She has a very rare kidney disease called Renal Tubular Acidosis. It affects about 1 in 10,000. This is supposedly resolved but she still does not grow. Gaining weight is a HUGE struggle for her. She goes to Children's frequently but no one can seem to figure out why she does not gain. They are now saying that she has a malabsorption problem. That she doesn't absorb nutrients, especially fat. This is particularly agonizing as we have been told since she was about a year old (and only 12lbs.) to feed her ice cream 3x's a day if she wants and to add butter to everything she eats. Make everything as fattening as possible. So....in turn, she does not eat anything healthy unless I sneak it into food. Now we find out the food we have been pushing on her per doctors orders may be the worst thing for her. I asked the doctors about this teaching her terrible eating habits a long time ago and they told me not to worry about it, that it was more important to get weight on her. Now my fears are reality. Developemantaly she is great. Size wise, she wears 24months-2T if we're lucky. The problem is, they are too short for her. She used an adjustable dog collar as a belt foreverbecause they don't make belts for babies. :lol:
Click to expand...

Wow
May God Bless you and keep his hands wraped tightly around Celie.
 
godsbutterfly

godsbutterfly

Free to Fly
bday::bday::bdaycake::bdaycake::bday::bday:

HAPPY 4TH BIRTHDAY, CELIE !!!


HOPE YOU HAVE A HAPPY AND HEALTHY YEAR AHEAD OF YOU, SWEETIE. :howdy:
 
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