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MJ's Dance Party

Nemo14

Nemo14

Well-Known Member
Uponastar said:
Yay!
Don't you just love the feeling of anticipation???
One of the best parts of any trip!
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So true - I've been on cloud nine all day - even when I was cleaning the cat boxes!

Got to go now though. We're heading over to the nursing home, then going to hear DS and his band at the coffeehouse. I'll be back late next saturday night!

Aarrrgh!:lol:
 
Uponastar

Uponastar

Well-Known Member
Nemo14 said:
So true - I've been on cloud nine all day - even when I was cleaning the cat boxes!

Got to go now though. We're heasding over to the nursing home, then going to hear DS and his band at the coffeehouse. I'll be back late next saturday night!

Aarrrgh!:lol:
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Bye Fishy! :wave:
Pictures. . .we want pictures!
 
MommytoMJM

MommytoMJM

New Member
theladybadger said:
Wow, Bonny. That's a lot to handle. You and Princess MJ are definitely in my thoughts and prayers. I'll try to learn some sign language so I can communicate with her next month.
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Yeah, it seems everytime we go there is something new...IM me later and I can give you a list of some basic words she uses. :kiss: <(MJ's fave smilie)

Nemo14 said:
*pokes head in*


Bonny -I'm glad you like this doctor. It makes such a difference when you trust their opinions!

Hi everyone else - I'm only here for a few minues...
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It does. Although he is the ONLY one of her doctors I trust...

Have a great trip Betty!

PotteryGal said:
Hi Rick/Bye Rick! :wave:

Bonny, you're in my thoughts and prayers as always. It's good that there isn't spina bifada, although the PMG is messing with MJ's sight :( . Feel free to PM or e-mail me anytime if you need to vent or just want to chat - I'll always listen. :kiss:

I'm going to have to go watch 'Evolution of Dance' on YouTube again...I need to giggle :lol:
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Thanks Jenny, I may take you up on that, I may need to call though, my hands are having a hard time lately, I had to take pain meds aftedr typing the report up...

Uponastar said:
Bonny thanks for the update!
I'm so glad that you have a feeling of comfort and trust with this doctor.
That is so very important!
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It sure is, nothing can ever happen to him!

joanna71985 said:
Everybody always leaves when I am here.:(
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I'm here honey...and you can always call too! MJ would love to hear from you, she asks everyday where you are and when you are coming home...
 
nibblesandbits

nibblesandbits

Well-Known Member
jesserin said:
LOVE IT! :lol:





And Nibbs... Can I just tell you that you are a total sweetie for doing those photography contests? I love looking at the pictures every week... :)
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Thanks Jess!!!

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!!!!
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Yay!!!

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.
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So glad you have a good dr to take care of Miss M now. Hopefully things continue to go well with this Dr and you can get the answers that you need.

rlaeromech said:
I LOVE THAT SONG, But I thought it was just the six flags commercial..:lol:
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Um...no...it was a song before that. I remember when it came out...:D

Uponastar said:
Hello.
Here for a few minutes.
Haircut wasn't disastrous.
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Yay for it not being disasterous!

joanna71985 said:
Or should I say that's good to "hair"?:D
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:rolleyes:
 
J

jesserin

New Member
nibblesandbits said:
Thanks Jess!!!




Yay!!!



So glad you have a good dr to take care of Miss M now. Hopefully things continue to go well with this Dr and you can get the answers that you need.



Um...no...it was a song before that. I remember when it came out...:D



Yay for it not being disasterous!



:rolleyes:
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Where'd you disappear to missy? What do you think this is?! A work day?! :lookaroun ;)
 

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