We went to Shriners yesterday for a follow-up visit and to pick up Sammy's bath chair. We didn't see the actual dr. after waiting over an hour, but saw a PA and she was happy enough with what she saw that she didn't feel we needed to wait to see Dr. Mack since he was running so far behind. They took xrays again of his hips and they still look good! Thank God! It is a concern due to his tight leg muscles. We have dodged that bullet so far! So then we went to see the OT to pick up his bath chair and saw the PT as well to discuss possibly getting him a stander. She went out back to the storage room and found us one his size for us to take home and use indefinitely! We LOVE Shriners! Sammy loves his new bath seat, I have tons of pics and a funny video (censored of course!) that I will post when I can get them on at school on Tuesday. (I'm going to try the pics tonight, but I know they won't work from this computer.) :( He doesn't mind the stander and the whole time he's in it, I tell him what a big, strong boy he is standing in it all by himself like Mommy is standing up by herself. He did 1/2 an hour in it tonight, which was AWESOME, considering it was dinner time and he hadn't had a nap! He really needs the weight bearing from it so that he can get rid of his scrawny CP chicken legs and so that his leg bones will grow properly. It also gives him a great hamstring stretch the whole time since he's in his AFO's and standing with his legs straightened, which they never fully are. He also has to hold his head up the whole time, so it's a great neck strengthening thing as well! We are very excited about this piece of equipment. When I took him out of and put him on his feet on the floor, he actually took STEPS with the AFO's on!!! He has NEVER done this!! He refuses to take steps with the AFO's on, and he actually did it!!! Not a ton of steps, but steps nonetheless!!!!!! I am so psyched!! I am trying to get him to realize if he works hard, he can get more independent, then Mommy won't have to carry him everywhere! I am still staying grounded, obviously, I know he isn't going to be an independent walker, but if I can motivate him enough to get him to be in a walker someday, that would be awesome!! It is too depressing right now to hear all of these people talking about lifts and ceiling tracks to move him when he gets older, that THAT's motivating ME to get him as strong as possible now.... The PT was also adament that we MAKE him wear his knee immobilizers while he's sleeping. She said it is crucial to get him used to sleeping with them when he's young to get that hamstring stretch so he doesn't shrink those muscles in the back of his legs while he's growing. Enough to scare me! I am starting them again tomorrow night. It's not like he's sleeping for anything at night anyway...it can't get much worse! ;)
Well, that's the good news.... now to the prayers part...please say prayers for my dad since he is in the hospital due to a repsiratory bug he caught. He has emphysema and he gets knocked for a loop with anything like this that comes his way. I am praying he gets better quickly and is able to come home soon. I am being guarded, though, as I know it takes a lot for him to get better from these things. I am praying also that his doctors and nurses be guided in their decision making.
Thanks...
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Followers
God Chooses A Mom for A Disabled Childby Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth; son; patron saint, Matthew.
"Forrest, Marjorie; daughter; patron saint, Cecelia.
"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independance. She'll have to teach the child to live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't seperate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.
"I will permit her to see clearly the things I see --- ignorance, cruelty, prejudice --- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in midair.
God smiles. "A mirror will suffice."
Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth; son; patron saint, Matthew.
"Forrest, Marjorie; daughter; patron saint, Cecelia.
"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independance. She'll have to teach the child to live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't seperate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.
"I will permit her to see clearly the things I see --- ignorance, cruelty, prejudice --- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in midair.
God smiles. "A mirror will suffice."
About Me
- ellen :)
- MA
- I'm a wife of 8 years, a mom of 2 gorgeous boys, one who has CP, and a lover of turtles! :)
4 comments:
Thats awesome about the stander I love shriners when it comes to stuff like. they were the ones that ordered Audriannas convaid cruiserand made sure is was equipped so that she can use it on the bus to go to school. They also are letting us borrow a walker for home til Audrianna gets to big for it cause her othere walker that we have through inssurance stays at school. . We tried A stander I wanna saty when Audrianna was a year old maybe 2 she hated it she doesn't likt to be strapped into things. Or at the time she didnt. We have a corner chair which we got through insurance to but she only used that when she had EI she never really uses it anymore. I will be praying for your father also.
thanks, Jenny!
Sounds like Sammy is doing some amazing things these days!! That is wonderful news. I'm glad that Shriner's has been such a positive experience for you.
I'm sorry about your Dad, he will definitely be in our prayers. I'm that is very nerve wracking.
thanks, Dawn!
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