My new play chair, thanks to Children's Home Society, aka Early Steps. This is temporary until we can get her own.
Good morning! (I love her bed head!)
- Posted using BlogPress from my iPhone
Thursday, June 16, 2011
Snap shots
Mom, I know you want me to make a mess but this texture feels a little weird. I think I'll wait before my hands go back in. (For the record she dumped it out but wasn't too sure about it so she just played with her hands.)
My new play chair, thanks to Children's Home Society, aka Early Steps. This is temporary until we can get her own.
Good morning! (I love her bed head!)
- Posted using BlogPress from my iPhone
My new play chair, thanks to Children's Home Society, aka Early Steps. This is temporary until we can get her own.
Good morning! (I love her bed head!)
- Posted using BlogPress from my iPhone
Wednesday, June 15, 2011
The Most Beautiful Flower, by Cheryl Costello-Forshey
Another mommy to a SOD/ONH baby posted this. It makes my heart melt!
The Most Beautiful Flower
By Cheryl Costello-Forshey
The park bench was deserted as I sat down to read
Beneath the long, straggly branches of an old willow tree.
Disillusioned by life with good reason to frown,
For the world was intent on dragging me down.
And if that weren't enough to ruin my day,
A young boy out of breath approached me, all tired from play.
He stood right before me with his head tilted down
And said with great excitement, "Look what I found!"
In his hand was a flower, and what a pitiful sight,
With its petals all worn - not enough rain, or too little light.
Wanting him to take his dead flower and go off to play,
I faked a small smile and then shifted away.
But instead of retreating he sat next to my side
And placed the flower to his nose and declared with overacted surprise,
"It sure smells pretty and it's beautiful, too. That's why I picked it;
here, it's for you."
The weed before me was dying or dead.
Not vibrant of colors, orange, yellow or red.
But I knew I must take it, or he might never leave.
So I reached for the flower, and replied, "Just what I need."
But instead of him placing the flower in my hand,
He held it mid-air without reason or plan.
It was then that I noticed for the very first time
That weed-toting boy could not see: he was blind.
I heard my voice quiver, tears shone like the sun
As I thanked him for picking the very best one.
You're welcome," he smiled, and then ran off to play
Unaware of the impact he'd had on my day.
I sat there and wondered how he managed to see
A self-pitying woman beneath an old willow tree.
How did he know of my self-indulged plight?
Perhaps from his heart, he'd been blessed with true sight.
Through the eyes of a blind child, at last I could see
The problem was not with the world; the problem was me.
And for all of those times I myself had been blind,
I vowed to see the beauty in life, and appreciate every second
that's mine.
And then I held that wilted flower up to my nose
And breathed in the fragrance of a beautiful rose
And smiled as I watched that young boy, another weed in his hand,
About to change the life of an unsuspecting old man.
http://www.focusfamilies.org/focus/poetry/poem5.asp
The Most Beautiful Flower
By Cheryl Costello-Forshey
The park bench was deserted as I sat down to read
Beneath the long, straggly branches of an old willow tree.
Disillusioned by life with good reason to frown,
For the world was intent on dragging me down.
And if that weren't enough to ruin my day,
A young boy out of breath approached me, all tired from play.
He stood right before me with his head tilted down
And said with great excitement, "Look what I found!"
In his hand was a flower, and what a pitiful sight,
With its petals all worn - not enough rain, or too little light.
Wanting him to take his dead flower and go off to play,
I faked a small smile and then shifted away.
But instead of retreating he sat next to my side
And placed the flower to his nose and declared with overacted surprise,
"It sure smells pretty and it's beautiful, too. That's why I picked it;
here, it's for you."
The weed before me was dying or dead.
Not vibrant of colors, orange, yellow or red.
But I knew I must take it, or he might never leave.
So I reached for the flower, and replied, "Just what I need."
But instead of him placing the flower in my hand,
He held it mid-air without reason or plan.
It was then that I noticed for the very first time
That weed-toting boy could not see: he was blind.
I heard my voice quiver, tears shone like the sun
As I thanked him for picking the very best one.
You're welcome," he smiled, and then ran off to play
Unaware of the impact he'd had on my day.
I sat there and wondered how he managed to see
A self-pitying woman beneath an old willow tree.
How did he know of my self-indulged plight?
Perhaps from his heart, he'd been blessed with true sight.
Through the eyes of a blind child, at last I could see
The problem was not with the world; the problem was me.
And for all of those times I myself had been blind,
I vowed to see the beauty in life, and appreciate every second
that's mine.
And then I held that wilted flower up to my nose
And breathed in the fragrance of a beautiful rose
And smiled as I watched that young boy, another weed in his hand,
About to change the life of an unsuspecting old man.
http://www.focusfamilies.org/focus/poetry/poem5.asp
Monday, June 13, 2011
2 teeth and heading to Ohio!
I'm not sure what's going on with my iPhone but I can't get pictures off so I'll just upload them later.
Latest breaking news: Ellie turned 9 months old on the 2nd! She got another tooth! We finally got our assignment and it's to Wright-Patterson AFB in Dayton, Ohio! Ellie started growth hormone replacement. She's holding her own bottle!
Alright so the second tooth coming in was not fun... at all. But with the help of motrin on the last day it made her a little happier. Also, on the 2nd she saw her endo and started growth hormone replacement. This is a shot that she gets every day. The needle is pretty small and the only time she cries is when she's in a bad mood which isn't often. I'm starting to think the top ones are coming in. She's slobbery and cranky and warm, but we'll see, it does take forever for those things to pop through.
Her holding her own bottle is so convenient! She's not a pro yet but she's pretty darn good :) She is slowly starting to eat baby food again. I think she just gets frustrated and wants something right away. So I give her bottle first and then I (pry) it out of her hands and start with the food before she screams that I took the bottle away. She's not eating a whole jar like she used to but she's doing something and that's all I'm going to ask of her right now. I didn't think her eating was as big of a deal as it could be. There's a facebook page and yahoo group for parents of munchkins with SOD/ONH and it seems as though a lot of the kids have eating problems. It's terrifying to think that this could be a problem in the future, Dusty and I both don't want her to have a g-tube (http://kidshealth.org/parent/system/surgery/g_tube.html) but today is not the day to think of it and we only take one day at a time.
So, she's on growth hormone replacement, ADH replacement, and thyroid hormone replacement. She gets cortisol replacement as needed. These 4 cover the hormones that she should be producing at her age. Yes, it stinks that she's getting all of them replaced BUT it's better to replace them then not to. And it kind of feels like a relief not wondering if there's something we're missing. Her ADH replacement (medication is DDAVP) for her Diabetes Insipidus was being given every 36-24 hours. But guess what! For the last few weeks she's been getting it about every 72 hours! It could mean a number of things 1) I wasn't calculating her I's and O's correctly or 2) she's weaning herself off. There's always the chance she will stop taking hormone replacements, if she does she might need them some other time, but then again there's the chance she'll always need them.
We weren't expecting Ohio. It was a little deflating hearing that's where we were going, but it will be great because we'll be about 2-3 hours from my family! I saw 2 ped endo's when I did a quick search and I'm sure they have therapists that will work with her. I just hope that we can have better confidence in the healthcare if she ever has to go to the ER again. I'm terrified to bring her to one in Panama City, they're not bad, they just don't know any of her conditions. When I do get out of the military there are a ton of AF civilian paralegal jobs available. Dusty's squadron will help set up his career so that he can continue burning through the ranks and showing how awesome he is, and we're hoping that he won't deploy as much. So while it's not Colorado like we were hoping, it's going to be great!
I think this is long enough, again, thanks for reading and feel free to pass along this blog to whomever would be interested. It's hear for education, understanding, and love.
Latest breaking news: Ellie turned 9 months old on the 2nd! She got another tooth! We finally got our assignment and it's to Wright-Patterson AFB in Dayton, Ohio! Ellie started growth hormone replacement. She's holding her own bottle!
Alright so the second tooth coming in was not fun... at all. But with the help of motrin on the last day it made her a little happier. Also, on the 2nd she saw her endo and started growth hormone replacement. This is a shot that she gets every day. The needle is pretty small and the only time she cries is when she's in a bad mood which isn't often. I'm starting to think the top ones are coming in. She's slobbery and cranky and warm, but we'll see, it does take forever for those things to pop through.
Her holding her own bottle is so convenient! She's not a pro yet but she's pretty darn good :) She is slowly starting to eat baby food again. I think she just gets frustrated and wants something right away. So I give her bottle first and then I (pry) it out of her hands and start with the food before she screams that I took the bottle away. She's not eating a whole jar like she used to but she's doing something and that's all I'm going to ask of her right now. I didn't think her eating was as big of a deal as it could be. There's a facebook page and yahoo group for parents of munchkins with SOD/ONH and it seems as though a lot of the kids have eating problems. It's terrifying to think that this could be a problem in the future, Dusty and I both don't want her to have a g-tube (http://kidshealth.org/parent/system/surgery/g_tube.html) but today is not the day to think of it and we only take one day at a time.
So, she's on growth hormone replacement, ADH replacement, and thyroid hormone replacement. She gets cortisol replacement as needed. These 4 cover the hormones that she should be producing at her age. Yes, it stinks that she's getting all of them replaced BUT it's better to replace them then not to. And it kind of feels like a relief not wondering if there's something we're missing. Her ADH replacement (medication is DDAVP) for her Diabetes Insipidus was being given every 36-24 hours. But guess what! For the last few weeks she's been getting it about every 72 hours! It could mean a number of things 1) I wasn't calculating her I's and O's correctly or 2) she's weaning herself off. There's always the chance she will stop taking hormone replacements, if she does she might need them some other time, but then again there's the chance she'll always need them.
We weren't expecting Ohio. It was a little deflating hearing that's where we were going, but it will be great because we'll be about 2-3 hours from my family! I saw 2 ped endo's when I did a quick search and I'm sure they have therapists that will work with her. I just hope that we can have better confidence in the healthcare if she ever has to go to the ER again. I'm terrified to bring her to one in Panama City, they're not bad, they just don't know any of her conditions. When I do get out of the military there are a ton of AF civilian paralegal jobs available. Dusty's squadron will help set up his career so that he can continue burning through the ranks and showing how awesome he is, and we're hoping that he won't deploy as much. So while it's not Colorado like we were hoping, it's going to be great!
I think this is long enough, again, thanks for reading and feel free to pass along this blog to whomever would be interested. It's hear for education, understanding, and love.
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