Re: info needed for newsletter

[Guest guest]

Kristy,

Tina Harduby's birthday is on 1/21. She will be 23.

Cheryl

[Guest guest]

Hi Kristy...I will try to submit something for the brag book. is

getting tubes in his ears on Thursday. I know it will relieve the pressure in

his

ears and help him feel better and hopefully help with his speech too. Hope all

is well Look forward to hearing more about the conference... 's OT is

very interested in MDS. I know you said you were looking for speech therapists

to join...she would be interested in consulting etc. Let me know what you

think... what you would want her to do etc. Also there is a speech therapist

here

in CT. who works alot with kids with DS Laurie Overland who follows the Sara

protocol. Have you heard of them.? Maybe she would be interested in

the group. She lectures all around the country. I scheduled a consult with her

for in late February...She was highly recommended by almost everyone I

spoke to here... great reputation...Let me know if you want me to pursue that at

all. Hope all is well with you and your family. LOL Ross

[Guest guest]

,

I know will be so much better once his tubes are in place! My kids seemed

so much healthier and could hear and speak more clearly once we got the tubes.

My grandson, Aidan, also needs tubes, but.. he is scheduled for so many

surgeries, that they are all trying to get everyone together to do it all at

once. They want to take his trache out, and also insert a G-tube in his belly

for night feedings, so...they will do the ear tubes when they do all this other

stuff with him.

Look back in the past few months and just see what has done, even

milestonely, and you could submit that if you wanted.

As for and OT and and ST...what I would like is for them to join this egroup and

be able to answer general questions that the parents have. Many parents outside

the US do not have these services available to them. I also would like an OT and

ST to be on our advisory board. This year, we would like to schedule chats with

certain medical professionals so the family members can ask questions concerning

their children. It is also very possible that we could get and OT or ST to write

an article for Mosaic World and they would have a special spot for a quarterly

article.

So....yes! If you can talk with these people and give them all this info

including the IMDSA info (below) it would be greatly appreciated!

IMDSA

PO Box 1052

lin,TX 77856

(979)828-1868

www.imdsa.com

Thanks,

Kristy

rnansoupy@... wrote:

Hi Kristy...I will try to submit something for the brag book. is

getting tubes in his ears on Thursday. I know it will relieve the pressure in

his

ears and help him feel better and hopefully help with his speech too. Hope all

is well Look forward to hearing more about the conference... 's OT is

very interested in MDS. I know you said you were looking for speech therapists

to join...she would be interested in consulting etc. Let me know what you

think... what you would want her to do etc. Also there is a speech therapist

here

in CT. who works alot with kids with DS Laurie Overland who follows the Sara

protocol. Have you heard of them.? Maybe she would be interested in

the group. She lectures all around the country. I scheduled a consult with her

for in late February...She was highly recommended by almost everyone I

spoke to here... great reputation...Let me know if you want me to pursue that at

all. Hope all is well with you and your family. LOL Ross

[Guest guest]

I have answered some questions in the past, and I will continue to answer

general questions when appropriate as a parent and an OT, but sometimes it isn't

appropriate to give an answer without more information. Also, would never

want to second guess a therapist who is actually seeing a child.

Sharon Kaye,

parent of Mark age 17 with MDS, 14, and Zack 11

but also an Occupational therapist in a private special ed. school for 18

years.

[Guest guest]

Sharon,

I agree with you. There are many questions that can not be answered just through

an email. The only thing that we are really looking for is general ideas on how

to help with the motor skills. That can be especially helpful when a person

doesn't have any services available in their area.

Kristy

KayeFam3@... wrote:

I have answered some questions in the past, and I will continue to answer

general questions when appropriate as a parent and an OT, but sometimes it isn't

appropriate to give an answer without more information. Also, would never

want to second guess a therapist who is actually seeing a child.

Sharon Kaye,

parent of Mark age 17 with MDS, 14, and Zack 11

but also an Occupational therapist in a private special ed. school for 18

years.