So we traveled to Northampton today to get Sammy's second round of Botox. They upped the dosage in each muscle so we'll see what happens. We had noticed a very small improvement in his tightness after the last round, but he had such a small dose that we weren't expecting miracles anyway....
He was good for the insane amount of waiting we had to do... we were brought in to get his numbing creme on and then waited for 40 minutes to get the shots..in the meantime the entire amount of creme rubbed off his leg onto this ridiculous paper thing they gave us to put on his legs over the creme. Usually they saran wrap it because it is supposed to be occluded, but the nurse said she couldn't find the saran wrap. So basically he got the shots with no numbing. He fussed some while they did the shots, and then when they were done, he looked at me and burst into hysterical tears. Poor guy! He got over it as soon as we got up to go...he is so good about pain and procedures, thank God! He was so funny on the way home, laughing and bicycling his legs and "talking" to his Elmo video. Luke went with me as my backup since Brian FINALLY is back to work and couldn't leave since he just started back this week and is traveling an hour each way. Thank God for the work, though! It'll be nice to have 2 paychecks again! :) We joked that with me being the only one bringing home the bacon, it was getting pretty lean around here! ;) Pun intended! :)
So good stuff.... no more appts. for right now until Sept. 28 for a follow-up with the Botox guy and then the 29th he is finally getting his teeth worked on. It is an ordeal since he needs general anesthesia for it and the outpatient center in town. My ins. refuses to pay for it and we have been desperately trying to get the Mass Health (state Medicaid) for his disability pushed through to cover it. I finally went to a local advocacy group and they are going to get it approved within a few weeks they said. Praise God! I am so thankful they exist...what would we do?? Another "window has been opened".... :)
Going to Maine in about 2 weeks..very excited for that! Just going for 3 nights but I can't wait to hear that ocean! mmmmm.... We didn't go to the Cape with the sisters this year, so this is especially sweet! :)
Guess that's it for now... Luke is doing well... trying to get in as much fishing as possible...no pics to share yet... loving having some time with my older boy after Sammy goes to bed. :)
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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! :)
8 comments:
Wow! That Sammy is amazing! I would've been screaming after those shots with no numbing cream, or more likely passing out! Ha! What a trooper he is and I'm glad it went well over all. I hope you see some great results. Have fun in Maine! We're headed to NH next week and I can't wait!
Thank goodness he's used to procedures, he had to have blood drawn today to test for more food allergies to see if that's what's been causing his last 2 weeks of GI issues. (I think it was the massive amt. of Barium that he had at the swallow study) We'll see... I think it's finally resolved now that we've taken dairy out of the picture temporarily to let things ease up! :)
Have fun on vacay, girl! :)
Thanks, Ellen! Wow, I hate to get blood drawn so I feel for poor Sammy. So far, Malayna's only had to have that done once and it was not fun but she got through it. Actually the finger prick for the lead test was much worse, she screamed loudly for that one. Couldn't blame the poor girl, either! I hope they find out what's going on with Sammy. I think it could definitely be the barium!
Awe poor Sammy - that darn botox. I guess at least he doesn't need general anesthesia but still no numbing cream. Youch! Have a great time in Maine. Would love to visit there someday.
And yay for Brian being back to work.
Thanks, Dawn, it is great to have 2 real paychecks again! Haven't seen any amazing results from the Botox yet, so we'll see... Sammy's GI issues are finally over it seems...I haven't put him back on the dairy yet just in case...waiting to hear the results of the allergy tests.
Maine is awesome...so peaceful and beautiful there! You definitely need to plan a trip in the future, and then we can meet up, you and Sheila and I! ;)And Jenny too..
Gosh Sammy is an awesome kid. I hate pain. I also hate it when people, especially medical people, nurses, take shortcuts. He was braver than me.
I have not had a computer all summer due to a faulty power system. I think I am up again, and I cannot wait to get caught up with everyone.
I love Sammy's new wheels. Emma would adore the yellow. What kind is it? He looks great in it.
It's great to hear from you, Amy! I was starting to get worried when I didn't get any updates all summer!
The wheelchair is called a Zippie TS. Brian did all of the actual ordering with the guy at the company, so the other details I don't know.... He does sit well in it, although he doesn't always want to be in it. Probably because it makes him sit appropriately. He'll be transported to school in it on the bus in the Fall. The tie downs are not quite right, but they gave us temporary ones to fix the issue until we figure out something else. Can't wait to hear what great things Emma has been up to this summer! :)
I bet you are on your vacation in Maine right now... I hope to read about the results of the botox. So many parents fret over the decision to try botox. It is helpful to read about other parents' experiences. Thanks, Barbara
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