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 Posted: Wed Jan 26, 2005 5:38 pm
Angelique~Yuna Tessie~ well it sounds like you had a super fun night at least! i bet when you finally went to sleep you crashed......... When we were done having the EEG, Amber was out of it...so we got home, and my mother took Crystal while Amber and I crashed. When she woke up a few hours later, she looked at me with this look....I can't get over her expression, it's like her eyes said "Why did you do this to me??" I had to try my best not to cry when I saw the pained look on her face crying But yeah, I did have fun playing with her, she thought it was great. I think the only part I didn't like was the car ride to the hospital, I had to be loud and obnoxious and clap my hands and whistle and sing loudly to keep her awake...I just wanted to let her sleep and I couldn't, I felt like the worst mother sad *logically I knew I was doing the right thing, but I knew how utterly tired she was*. I just wanted to say that I think all of you are so amazing...it's not easy being a parent of a special needs child, but you stay strong and enjoy your children to the fullest, that's just so awesome biggrin
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Posted: Thu Jan 27, 2005 12:55 pm
Tessiebean Angelique~Yuna Tessie~ well it sounds like you had a super fun night at least! i bet when you finally went to sleep you crashed......... When we were done having the EEG, Amber was out of it...so we got home, and my mother took Crystal while Amber and I crashed. When she woke up a few hours later, she looked at me with this look....I can't get over her expression, it's like her eyes said "Why did you do this to me??" I had to try my best not to cry when I saw the pained look on her face crying But yeah, I did have fun playing with her, she thought it was great. I think the only part I didn't like was the car ride to the hospital, I had to be loud and obnoxious and clap my hands and whistle and sing loudly to keep her awake...I just wanted to let her sleep and I couldn't, I felt like the worst mother sad *logically I knew I was doing the right thing, but I knew how utterly tired she was*. I just wanted to say that I think all of you are so amazing...it's not easy being a parent of a special needs child, but you stay strong and enjoy your children to the fullest, that's just so awesome biggrin Thank you...and i know withthe eegs erics had two and he always looked so devasted after and i felt like the worlds worst mom for keeping him awake DX but it had to be done and were better parents for sucking it up and doing what we gotta do...even though we feel simply horrid. You got lucky eric screamed and wailed the whole time he actually screamed himself to sleep while they were attaching those things to his head XD looking back on it they look so funny with all the brightly colored wires i shoulda taken pictures XP ~hugs~ just remember your doing it for her not to her ..i tell myself that everyday and it helps 3nodding i hope all is well^^ these kids are all too cute 4laugh
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Posted: Thu Jan 27, 2005 3:11 pm
lunashock I've heard a little bit of Hirschsprung's come to think of it when my husband was in nursing school. Is there like a website that has maybe like a support group? I know that there's an IBS webpage just for support and education. Tessie, I'm glad to hear that she's been doing well since. 3nodding Hi Lunashock, After your suggestion, wink I went hunting for Hirschsprung's Support and found one in the UK > Hirschsprungs & Motility Disorders Support Network and I also found this page at Family Village with links to support groups and more info > Hirschsprung Disease @ Family Village I hope this helps!
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Posted: Thu Jan 27, 2005 3:55 pm
dA_fUnKy_mOnKeY theyre gonna test eric for that ....hes so fits it...see his pics on the first entry in my journal ..i think his dad and half sister have that....im so nervous gonk You've probably already found this info, but I thought I'd share it in case you hadn't. At the Williams Syndrome Comprehensive web site WSF - there's a section for new WS Parents with lots of information. I don't know if this is helpful or not, but they also have a Media Packet in PDF form that pops up when you click on "For Parents" under the Medical Heading. wink
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Posted: Thu Jan 27, 2005 4:14 pm
Angelique~Yuna oh man Fletchen, good luck! i hope your child's meds get straightened out soon without any problems........that woudl be so hard.......and i hope your wee one is feeling better today James is feeling better, his fever is gone. Thanks for asking. I'm feeling sick and have a fever now, though. confused Of course, I still managed the laundry shuffle, vaccuuming and general housecleaning. I think being trapped in the house isn't helping since we're not getting much circulated air in here. The kids had another snow day today and school has been cancelled for tomorrow, too. I've done a fair amount of appointment rescheduling this week because the snow just keeps coming. Robert went to a friend's house for a few hours. Emme and I played a Hello Kitty board game, which was nice. wink The only time I've driven this week was to bring Emme to the hospital for bloodwork. I just wish we were all feeling well enough to play outside. Once the results for the bloodwork come back then her doctor will let us know which medications he think will be best suited to her. The whole thing terrifies me, really. Mental illness can be so frightening and I just want to do the best I can for her. I continue to see the effects of her having behavior problems at school - a good friend of hers had verbally invited her to a sleep over but when it was time to hand out invitations, Emme didn't receive one. Emme's feelings were really hurt and she cried a lot. I just tried to comfort her the best I could. The truth of the matter is, I don't know if she's capable of handling a sleepover with other girls that she doesn't know very well. crying Emme's slept over her best friend's house a few times, but her family understands how to deal with Emme's emotional outbursts since their daughter has Asperger's. Does anyone else notice their kids having social problems?
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Posted: Thu Jan 27, 2005 4:22 pm
Tessiebean Angelique~Yuna Tessie~ well it sounds like you had a super fun night at least! i bet when you finally went to sleep you crashed......... When we were done having the EEG, Amber was out of it...so we got home, and my mother took Crystal while Amber and I crashed. When she woke up a few hours later, she looked at me with this look....I can't get over her expression, it's like her eyes said "Why did you do this to me??" I had to try my best not to cry when I saw the pained look on her face crying But yeah, I did have fun playing with her, she thought it was great. I think the only part I didn't like was the car ride to the hospital, I had to be loud and obnoxious and clap my hands and whistle and sing loudly to keep her awake...I just wanted to let her sleep and I couldn't, I felt like the worst mother sad *logically I knew I was doing the right thing, but I knew how utterly tired she was*. I just wanted to say that I think all of you are so amazing...it's not easy being a parent of a special needs child, but you stay strong and enjoy your children to the fullest, that's just so awesome biggrin Oh Tessie, I've felt like the worst mother before - I get "Mommy Guilt" on occassion, trying to do my best to help her even when she's being irrational. I actually feel horrible when I can't divide my attention among my kids effectively, sometimes I feel like I'm short-changing my youngest when I'm dealing with the problems that the older two might be having at school. But thank you for being supportive, too. wink It really helps, especially seeing how everyone else seems to be coping so well.
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Posted: Fri Jan 28, 2005 4:56 am
Hi. My children were born as multiples of 5. My daughter, the smallest, Cecillia, was born with Cerebral Palsy.
Shei s a wonderful trouper, working with her thearpists and doctors with out a fear. She is the bravest and most timid of my little ones.
She as what is know as Spastic Cerebral Palasy which causes difficulty of movement in her legs and arms. her neck muscles have little muscle tone in them making it diffacult for her to lift and move her head. But she has found MANY ways to improvise. She is just as wild as her brothers and sister.
Its difficult sometimes, going to doctors and stuff. Sometimes her siblings think she is getting more attention than the others. But that is not the case. when they get older i'll explain she needs special attention and love.
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Posted: Fri Jan 28, 2005 6:01 pm
piccas from my vacation now in my journal ^_^
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Posted: Fri Jan 28, 2005 6:04 pm
Matyo Hi. My children were born as multiples of 5. My daughter, the smallest, Cecillia, was born with Cerebral Palsy. Shei s a wonderful trouper, working with her thearpists and doctors with out a fear. She is the bravest and most timid of my little ones. She as what is know as Spastic Cerebral Palasy which causes difficulty of movement in her legs and arms. her neck muscles have little muscle tone in them making it diffacult for her to lift and move her head. But she has found MANY ways to improvise. She is just as wild as her brothers and sister. Its difficult sometimes, going to doctors and stuff. Sometimes her siblings think she is getting more attention than the others. But that is not the case. when they get older i'll explain she needs special attention and love. Oh my 5 at once....i deem you "SUPER MOM"...i know a bit about that type of cp...pt helps soooo much..they say eric probably has hypotonic cp...they say alot and i understand 1/4 of it XD. Pics 3nodding and welcome to you and all your cutie pies ^_^
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Posted: Sun Jan 30, 2005 10:12 pm
today was a good day..eric was happy and we spent alot of time together. I hope everyone is well ^_^
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Posted: Mon Jan 31, 2005 7:43 am
oh Tessie, i would have cried too had i seen that expression on ben's face........thanks so much for your support, i do appreciate it........thank you, and i try every day to enjoy him the fullest........
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Posted: Mon Jan 31, 2005 7:47 am
hey fletchen, i hope and pray it wall works out for Emme, that's so sad that she didn't get to go over and cried.......i remember that happening to me a few times as a kid, kind of traumatizing (sp?)..........it's good to hear that james is feeling better, i hope you feel better too.......mental illness also scares me......i knew literally nothing about mental illness when ben was born........sometimes it's still hard for me to accept and believe he has one..........but i'm still adjusting and accepting.... redface
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Posted: Mon Jan 31, 2005 7:53 am
Matyo Hi. My children were born as multiples of 5. My daughter, the smallest, Cecillia, was born with Cerebral Palsy. Shei s a wonderful trouper, working with her thearpists and doctors with out a fear. She is the bravest and most timid of my little ones. She as what is know as Spastic Cerebral Palasy which causes difficulty of movement in her legs and arms. her neck muscles have little muscle tone in them making it diffacult for her to lift and move her head. But she has found MANY ways to improvise. She is just as wild as her brothers and sister. Its difficult sometimes, going to doctors and stuff. Sometimes her siblings think she is getting more attention than the others. But that is not the case. when they get older i'll explain she needs special attention and love. welocme, and wow, 5 wee lil ones..........i have a hard time with just one, i can't imagine 5......eeps! you are a super mom! i know some thigns about ceberal palsy, i took care of a girl up at the college and she had it........she was accepted into a masters program here...she's doing pretty well
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Posted: Mon Jan 31, 2005 7:54 am
dA_fUnKy_mOnKeY today was a good day..eric was happy and we spent alot of time together. I hope everyone is well ^_^ hey hon! i'm happy to hear you had a good one and that everyone is well.......ben is ok here, just starting to get a little fussy at the moment, i had a good weekend.......hope all is well there............
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Posted: Mon Jan 31, 2005 10:41 am
Ooo, nice sites to check out.
I know my friend who's son has William's, he goes to a special school, and they even have it so on weekends if you need someone to watch him, they can arrange it. It's a really good school from what I hear. She also said something they have William's meetings every so often as well.
As for CP, it's a lot of work depending on the severity and type, but it's well worth the effort, my BIL is a great guy and has really overcome his from what I hear.
Mommy Guilt! Ack, that's the worse! They don't even have to say anything, they just give you the look.
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