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MJ's Dance Party

theladybadger

theladybadger

New Member
Hey everyone, sorry for the late arrival. Had to get up at 8:30 a.m. for my first class at 9:30 a.m. Now I've got a long weekend ahead of me with doing lots of homework plus working at the convenience store I work in. Ug, I would much rather be working Extra Magic Hour in the parks than be working in that place. Oh well, it gives me money which I desperately need right now for my trip to the wonderful world next month.:shrug:
 
J

jesserin

New Member
rlaeromech said:
that sounds good.. I was going get some soup but the bosses wife is bringing Hot wings!!!!! So I'll wait for those..

I voted in my first photo contest!!!!
Click to expand...

I rarely... if ever... (like once or twice a year) drink soda. :lol: Soooo i'm drinking it slow... ;)

and... who'd you vote for? :lookaroun :king:

theladybadger said:
Hey everyone, sorry for the late arrival. Had to get up at 8:30 a.m. for my first class at 9:30 a.m. Now I've got a long weekend ahead of me with doing lots of homework plus working at the convenience store I work in. Ug, I would much rather be working Extra Magic Hour in the parks than be working in that place. Oh well, it gives me money which I desperately need right now for my trip to the wonderful world next month.:shrug:
Click to expand...

Well that'll be fun next month! Hope you have an enjoyable weekend, despite the crazy schedule! :)
 
mpoppins76

mpoppins76

Well-Known Member
jesserin said:
I'm drinking a cherry pepsi.

:slurp: :lookaroun
Click to expand...
:slurp:
rlaeromech said:
that sounds good.. I was going get some soup but the bosses wife is bringing Hot wings!!!!! So I'll wait for those..
Click to expand...
*drool*
theladybadger said:
Hey everyone, sorry for the late arrival. Had to get up at 8:30 a.m. for my first class at 9:30 a.m. Now I've got a long weekend ahead of me with doing lots of homework plus working at the convenience store I work in. Ug, I would much rather be working Extra Magic Hour in the parks than be working in that place. Oh well, it gives me money which I desperately need right now for my trip to the wonderful world next month.:shrug:
Click to expand...
:wave: hey Rachel
 
MommytoMJM

MommytoMJM

New Member
Neurology Update 2-15-07

Hi there all-

Well, we went to the Neuro yesterday, lots of news...I'll try to hit it in order...

MJ has gained over 15 pounds this year, this is not a good thing, that is more than a pound a month so we are looking at changing her psychiatric medication (the one for her hallucinations) from Risperdal to either Zonisamide or Seroquel we are doing the research to see which ones contain corn or not...

We have quite a few things now going on with her ears necessitating some changes. Her PMG (Polymicrogyria [brain damage]) is most likely affecting her hearing on the left side, she now has Auditory Processing Disorder and is also having very increased auditory sensitivities (we carry her *ears* with us everywhere now and she often wears them even in the house) because of this we are relying even more on her non-verbal communication models (sign language, PECS, etc) In an effort to help her more in the outside community, her doctor is writing to the local sign language service so she will be able to use interpreters more. She seems to be aware on some level of her inability to process auditory signals, I taught her the sign for *sign language* and she often uses it to tell me to sign rather than talk. She also will sign her name sign now when asked her name, she can sign MJ but can only say M. It is fascinating to watch her come up with ways to communicate alternatively.

The X-rays show that she doesn't have spina bifida, but Dr. Barr says she most likely has some other defect in that region that is not bony but is in the muscles, tendons, etc. So her symptoms mimic SB but are something else. She *does* still have S curve scoliosis. He is looking for a developmental clinic to take her on to refit her wheelchair seating, etc.

I talked with him at length about her CP and how it seems to be getting worse (CP is a static condition and shouldn't get *worse*) As it turns out, the PMG is the cause of her CP *getting worse* because PMG is so rare, it is really hard to predict the outcome of much of anything....sigh.

He also did some minor testing on her vision in her left eye, some peripheral stuff, she didn't even know his hand was there on the left side, so we were right in our suspicion that her vision has been compromised by the PMG, we need to see a pediatric Ophthalmologist to determine the extent of damage.

We dropped of Andrew's FMLA paperwork with him and once we get that turned in Andrew will be able to take off of work and make sure his job is kept. That will be a relief. We sure could have used that last summer when she was in the hospital.

We are still trying to get her diapers paid for, no dice on that yet...

We have another appt in March to discuss med changes and other things. Dr. Barr is really on the ball and I just love him and his office staff, they treat MJ like a Princess and are always so happy to see her.
 
rlaeromech

rlaeromech

Member
jesserin said:
http://www.youtube.com/watch?v=BadzZeey4h0&mode=related&search=

Here ya go Rick... :lookaroun

*disclaimer* Not that the title applies to you. :lookaroun :D


http://www.youtube.com/watch?v=WUU9CqrtFiU&mode=related&search=

Thanks rick... Now you've got me looking. :lol:
Click to expand...


Uh-uh! Actually it does!!!

www.brianregan.com

He has some video's and a few commercials he's done. He is really funny..

I think my favorite line that I use is..... "I'm stupid, somebody throw a tarp over me!"
 
J

jesserin

New Member
MommytoMJM said:
Neurology Update 2-15-07

Hi there all-

Well, we went to the Neuro yesterday, lots of news...I'll try to hit it in order...

MJ has gained over 15 pounds this year, this is not a good thing, that is more than a pound a month so we are looking at changing her psychiatric medication (the one for her hallucinations) from Risperdal to either Zonisamide or Seroquel we are doing the research to see which ones contain corn or not...

We have quite a few things now going on with her ears necessitating some changes. Her PMG (Polymicrogyria [brain damage]) is most likely affecting her hearing on the left side, she now has Auditory Processing Disorder and is also having very increased auditory sensitivities (we carry her *ears* with us everywhere now and she often wears them even in the house) because of this we are relying even more on her non-verbal communication models (sign language, PECS, etc) In an effort to help her more in the outside community, her doctor is writing to the local sign language service so she will be able to use interpreters more. She seems to be aware on some level of her inability to process auditory signals, I taught her the sign for *sign language* and she often uses it to tell me to sign rather than talk. She also will sign her name sign now when asked her name, she can sign MJ but can only say M. It is fascinating to watch her come up with ways to communicate alternatively.

The X-rays show that she doesn't have spina bifida, but Dr. Barr says she most likely has some other defect in that region that is not bony but is in the muscles, tendons, etc. So her symptoms mimic SB but are something else. She *does* still have S curve scoliosis. He is looking for a developmental clinic to take her on to refit her wheelchair seating, etc.

I talked with him at length about her CP and how it seems to be getting worse (CP is a static condition and shouldn't get *worse*) As it turns out, the PMG is the cause of her CP *getting worse* because PMG is so rare, it is really hard to predict the outcome of much of anything....sigh.

He also did some minor testing on her vision in her left eye, some peripheral stuff, she didn't even know his hand was there on the left side, so we were right in our suspicion that her vision has been compromised by the PMG, we need to see a pediatric Ophthalmologist to determine the extent of damage.

We dropped of Andrew's FMLA paperwork with him and once we get that turned in Andrew will be able to take off of work and make sure his job is kept. That will be a relief. We sure could have used that last summer when she was in the hospital.

We are still trying to get her diapers paid for, no dice on that yet...

We have another appt in March to discuss med changes and other things. Dr. Barr is really on the ball and I just love him and his office staff, they treat MJ like a Princess and are always so happy to see her.
Click to expand...


Thank God for good doctors Bonny! :) That's a blessing...

Thanks for the update, we'll keep your family in our prayers as always Bonny... :kiss:
 
mpoppins76

mpoppins76

Well-Known Member
MommytoMJM said:
Neurology Update 2-15-07

Hi there all-

Well, we went to the Neuro yesterday, lots of news...I'll try to hit it in order...

MJ has gained over 15 pounds this year, this is not a good thing, that is more than a pound a month so we are looking at changing her psychiatric medication (the one for her hallucinations) from Risperdal to either Zonisamide or Seroquel we are doing the research to see which ones contain corn or not...

We have quite a few things now going on with her ears necessitating some changes. Her PMG (Polymicrogyria [brain damage]) is most likely affecting her hearing on the left side, she now has Auditory Processing Disorder and is also having very increased auditory sensitivities (we carry her *ears* with us everywhere now and she often wears them even in the house) because of this we are relying even more on her non-verbal communication models (sign language, PECS, etc) In an effort to help her more in the outside community, her doctor is writing to the local sign language service so she will be able to use interpreters more. She seems to be aware on some level of her inability to process auditory signals, I taught her the sign for *sign language* and she often uses it to tell me to sign rather than talk. She also will sign her name sign now when asked her name, she can sign MJ but can only say M. It is fascinating to watch her come up with ways to communicate alternatively.

The X-rays show that she doesn't have spina bifida, but Dr. Barr says she most likely has some other defect in that region that is not bony but is in the muscles, tendons, etc. So her symptoms mimic SB but are something else. She *does* still have S curve scoliosis. He is looking for a developmental clinic to take her on to refit her wheelchair seating, etc.

I talked with him at length about her CP and how it seems to be getting worse (CP is a static condition and shouldn't get *worse*) As it turns out, the PMG is the cause of her CP *getting worse* because PMG is so rare, it is really hard to predict the outcome of much of anything....sigh.

He also did some minor testing on her vision in her left eye, some peripheral stuff, she didn't even know his hand was there on the left side, so we were right in our suspicion that her vision has been compromised by the PMG, we need to see a pediatric Ophthalmologist to determine the extent of damage.

We dropped of Andrew's FMLA paperwork with him and once we get that turned in Andrew will be able to take off of work and make sure his job is kept. That will be a relief. We sure could have used that last summer when she was in the hospital.

We are still trying to get her diapers paid for, no dice on that yet...

We have another appt in March to discuss med changes and other things. Dr. Barr is really on the ball and I just love him and his office staff, they treat MJ like a Princess and are always so happy to see her.
Click to expand...
Wow, Bonny. It sounds like you have the gift of a wonderful doctor. Your family continues to be an inspiration and you are in my prayers every night. Here's hoping for Andrew's time off! :)
 
joanna71985

joanna71985

Well-Known Member
J

jesserin

New Member
rlaeromech said:
Hey Bonny! Good Doctors are a blessing!

What do you mean her diapers aren't paid for?
Click to expand...

MJ wears special diapers that are rather expensive... their insurance no longer covers the diapers, so it's an out of pocket expense they're hoping to get covered again soon.

(That's pretty much the gist of it right Bonny?)

joanna71985 said:
Thanks! I actually have the first one, believe it or not.:D
Click to expand...

Hey sweetie! :wave: I haven't been on at the same time as you in days! :lol: How are you girly? Enjoying your long weekend?
 

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