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File - Roll Call-Check In   Message List  
Reply | Forward Message #1327 of 2359 |
Re: [cerebralpalsy] File - Roll Call-Check In

Well, alot has happened over these past few months. 
 
its been one week since matt had his surgery to implant the vns system.  its a vagus nerve stimulator that should help reduce the seizure activity that drugs don't help.  he's doing great.  the surgery and aftercare went very well with little pain.  and the best part is that there has been a slight reduction in seizures already YEAH!!!!
 
also, matt just started getting private therapy through our local united cerebral palsy center.  i wish we had started this a year ago.  its an amazing place with some amazing people.  he will get pt,ot,speech twice a week.  he will still have the early intervention people involved, but this is more specific to matt's needs.  i'm really excited about this!!!!
 
that's it for now.  hope all is well with everyone else!!
betsy


cerebralpalsy@yahoogroups.com wrote:

How is everyone doing? Please take a second to give us a update. Let us know if there are any new milestones your child has reached. Anything new in your life. Also remember to post a link to your personal website.

Thanks!
Castle
Group Owner


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Sat Jul 1, 2006 3:39 pm

pajak4
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Message #1327 of 2359 |
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How is everyone doing? Please take a second to give us a update. Let us know if there are any new milestones your child has reached. Anything new in your...
cerebralpalsy@yahoogr...
Send Email
Jul 1, 2006
2:44 pm

Well, alot has happened over these past few months. its been one week since matt had his surgery to implant the vns system. its a vagus nerve stimulator that...
betsy pajak
pajak4
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Jul 1, 2006
3:45 pm

Hi Betsy, I am so happy that the surgery Matt had has reduced his seizure. Your kids are both beautiful and Sophia is such a cute name. It sounds like you are...
staci
flygirl_82us
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Jul 2, 2006
8:31 pm

well thanks for thinking i'm doing a great job, but frankly, there are lots of days where we are just plain lazy!! now i may be naive, but doesn't the local...
betsy pajak
pajak4
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Jul 2, 2006
8:48 pm

It is frustrating to wait Staci. I live in Houston, where the Texas Children's Medical Center is. There is a wait to see his specialist every year. Right now,...
Jovi Escobedo
jovijovi29
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Jul 2, 2006
9:49 pm

I hate when I feel like the Doctors don't really care. It seems like if it was there child they would have already found him a place to go for PT. We have been...
staci
flygirl_82us
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Jul 2, 2006
10:34 pm

I hear you girl....believe me I do, and I'm right there with you on the frustration part! Chin up.....! ... if it was there child they would have already found...
jovijovi29
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Jul 2, 2006
11:42 pm

Thanks Jovi, I feel better that someone knows how I feel. When we visit family out of state and they ask if he is getting therapy and I say no that we are...
staci
flygirl_82us
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Jul 3, 2006
3:11 am

Staci, Did the Scottish Rite send you paper work yet or give you an appointment. I think we only waited a few months for our clinic visits and the main reason...
Carleen Briney
pinkfuzzycow...
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Jul 3, 2006
2:56 am

Hi Carleen, We mailed the paper work into the scottish rite this past monday. So we probably have a few months to go yet to get in there? I should make sure he...
staci
flygirl_82us
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Jul 3, 2006
3:23 am

Staci, Let me know if you need anything. I'll pop into family services while I'm there to see if there is anyway to speed up getting services. I have to stop...
Carleen Briney
pinkfuzzycow...
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Jul 3, 2006
3:49 am

Hi Carleen, It would be cool if you could say something to them and see what they say. He hasn't had and ortho appointment in over a year. Thats what I am...
staci
flygirl_82us
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Jul 3, 2006
5:10 pm

Staci, Hey we all have to look out for each other, no one else truly understands what we go through to get these appointments. For years I have taken crap from...
Carleen Briney
pinkfuzzycow...
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Jul 3, 2006
11:31 pm

How is everyone doing? Please take a second to give us a update. Let us know if there are any new milestones your child has reached. Anything new in your...
cerebralpalsy@yahoogr...
Send Email
Aug 1, 2006
5:21 pm

Getting ready for my BABY (7 years old, she hates that sometimes that she is my baby) to enter 1st grade! BOHOOOOOOBOOOOHOOOO ;( Well, she is growing up ( and...
Amy
amy_wayne59
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Aug 9, 2006
9:34 am

How is everyone doing? Please take a second to give us a update. Let us know if there are any new milestones your child has reached. Anything new in your...
cerebralpalsy@yahoogr...
Send Email
Sep 1, 2006
8:56 pm

How is everyone doing? Please take a second to give us a update. Let us know if there are any new milestones your child has reached. Anything new in your...
cerebralpalsy@yahoogr...
Send Email
Oct 1, 2006
7:45 pm

Last month Sarah had her hip flexors, hamstrings and adductors released. All seems to be going well. Next week the casts come off and rehab starts....
Carleen Briney
pinkfuzzycow...
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Oct 3, 2006
5:54 pm

Hunter has been doing well. We still need to get him in to get new braces. He's going to the Scottish Rite hospital at the end of the month to be seen for...
staci
flygirl_82us
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Oct 8, 2006
4:49 pm

I hate losing good therapists we had a great PT at school for 2 years and last year she had an okay one, this year I am not impressed at all. I believe they...
crystal hamner
iepslave2000
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Oct 9, 2006
6:43 pm

Glad to hear the surgery went well! We will probabally be doing the same surgery after the rhizotomy surgery. What was the total time she was/will be in a...
crystal hamner
iepslave2000
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Oct 9, 2006
7:46 pm

Since we didn't do the achilles she only had to do 3 weeks in the casts (and a day her surgeon and orthotics guy were both out of the office today. If they...
Carleen Briney
pinkfuzzycow...
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Oct 9, 2006
10:46 pm

Interesting your take about the schools. Of course Emily will be out for an extended period of time and after your post I thought hmmm maybe I should check...
crystal hamner
iepslave2000
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Oct 10, 2006
7:33 pm

Most schools will not offer homebound studies unless the child is going to miss more than 4 weeks of school. I was told our schools the child had to miss 2...
Carleen Briney
pinkfuzzycow...
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Oct 11, 2006
3:45 am

So what are they saying? If the kiddo is up and moving around she can go to school? Thank you for the benefit of your hindsight I will call the school admin. ...
crystal hamner
iepslave2000
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Oct 11, 2006
12:27 pm

If it wasn't for laughter we would surly cease to exist. I amazes me that I fall for this all the time. She'll do real good today she will be alone most of...
Carleen Briney
pinkfuzzycow...
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Oct 11, 2006
1:48 pm

Isn't that the truth. I'd feel guilty about my wallowing in self pity moments if it wasn't for the silly fits of laughter afterwards. I'm in Greensboro, not...
crystal hamner
iepslave2000
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Oct 11, 2006
3:57 pm

well we are home from the hospital and fighting everything. She will walk for me not not until she raises a big sting and tantrums. God this is going to age...
Carleen Briney
pinkfuzzycow...
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Oct 14, 2006
2:04 am

Well we have been quite busy....Emily was admitted to Duke Hospital for a baclofen infusion trial as a kind of diagnostic test to see if she is a canidate for...
crystal hamner
iepslave2000
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Oct 9, 2006
6:20 pm

Good luck with that we looked into that a few years ago but the doctors didn't think it was a good surgery for her they felt she had more to loose than gain....
Carleen Briney
pinkfuzzycow...
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Oct 9, 2006
7:22 pm
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