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Janie update

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Re : Janie update

Postby paljane8 » Wed Apr 28, 2004 10:04 am

by paljane8 (1416 Posts), Wed Apr 28, 2004 10:04 am

I talked to Children's, the doc and the therapists yesterday and it was so good because I got a lot of info. The visit at Children's isn't until Sept but, we are on the cancellation call-back list. So, really, it could be any time between now and Sept. The doc gave us some great info on syndromes and gave us his take. He was very positive and reasuring. He is going to meet with her next week. The therapists have the same thoughts as the others last week. Janie's features are not glaring but there are enough of them that it would be worth having her genetically tested. She tested well yesterday but, she is significantly delayed and in the areas consistant with syndromes. Janie's tongue is out most of the time and they are not sure yet if it is neurological or because of her oral low tone. So, we wait for answers. And in my oppinion, syndromes are just a list of symptoms anyway. She is who she is.

Nancy Eastwood
Moderator/WA State Co-Coordinator

Calvin-8yrs
Saren-7yrs
Scott-4yrs (PE)
Janie-5/03 (PIH, oligo and low blood flow)
http://www.babiesonline.com/babies/4/4lbs/
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Re : Janie update

Postby mom2gigi » Wed Apr 28, 2004 10:32 pm

by mom2gigi (198 Posts), Wed Apr 28, 2004 10:32 pm

Just want you to know that you are in my thoughts and prayers, may God bless you and give you the strength you need in your times of trouble. Hope everything comes out great!

Adriana

Giselle - born 6/04 @ 35wks, severe sudden preeclampsia by emergency c-section.
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Re : Janie update

Postby ann marie » Tue May 04, 2004 05:54 pm

by ann marie (1034 Posts), Tue May 04, 2004 05:54 pm

Nancy,

I just wanted to let you know I'm keeping you and Janie in my prayers. As with so many health related things not knowing is many times the worst part. I hope that you can find some peace while you wait for your appointment. If I can ever be of any support to you, please email me. I'd love to give back some of the support you have given me:)



Ann Marie
PIH/PE/Low Amniotic Fluid
Luke 3/17/04--37 weeks
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Re : Janie update

Postby paljane8 » Tue May 04, 2004 07:58 pm

by paljane8 (1416 Posts), Tue May 04, 2004 07:58 pm

Thanks. I am so appreciative of the thoughts and prayers. Janie had a visit with the doc. More of the same. She is >16lbs now. She looks good. Just waiting... She meets with the OT tomorrow. Can y'all believe she will be a year next week?!!!

Adriana, Giselle is GORGEOUS! Great avatar!

Ann Marie, how's Luke? I e-mailed you, sweetie.

Nancy Eastwood
Moderator/WA State Co-Coordinator

Calvin-8yrs
Saren-7yrs
Scott-4yrs (PE)
Janie-5/03 (PIH, oligo and low blood flow)
http://www.babiesonline.com/babies/4/4lbs/
paljane8
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Posts: 1416
Joined: Fri Apr 04, 2003 02:17 pm

Re : Janie update

Postby mom2gigi » Wed May 05, 2004 08:37 pm

by mom2gigi (198 Posts), Wed May 05, 2004 08:37 pm

Thanks! I think she's pretty gorgeous myself, unfortunately she doesn't take after me. OH well, maybe next one will be a boy that looks like me.

Hope Janie's meeting went good today. And I know, I can't believe Gigi turns 1 year next month!

Adriana

Giselle - born 6/04 @ 35wks, severe sudden preeclampsia by emergency c-section.
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Re : Janie update

Postby momathelete » Thu May 06, 2004 08:35 pm

by momathelete (227 Posts), Thu May 06, 2004 08:35 pm

Nancy,

How did the OT go??

Many Hugs,


Michelle
Moderator -On Bedrest
Interim Local Coordinator -Illinois

mom to Cole (HELP pregnancy, 28 wkr) 5 yrs old
Lainey (preE pregnancy, 29 wkr) 2 yrs old
Ella (PIH, 37 wkr) 8 mns
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Re : Janie update

Postby hutced » Fri May 07, 2004 05:56 am

by hutced (263 Posts), Fri May 07, 2004 05:56 am

Happy Birthday Janie. My prayers go out to you and your family.

Denise
Emily 3-6-02 41 1/2wks, 7lbs15oz
Evan 10-21-03 35wks, 5lbs6oz, PIH/PE (placental abruption)http://www.babiesonline.com/babies/h/hutced/
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Re : Janie update

Postby paljane8 » Sat May 08, 2004 09:38 pm

by paljane8 (1416 Posts), Sat May 08, 2004 09:38 pm

The OT went well. But, you know how they focus on the things babies can't do? That is wearing on me! She (the OT) wants to do some massage therapy along with the ot to increase circulation to Janie's legs. She said it will help her muscles develop. That's pretty cool. The ot is great, I am not sure who the st (speech therapist) will be but, I am trying to get this one gal I love. I don't like the pt (physical therapsit) very much but, I thought I would give her a chance before we wave 'buh bye' (sorry Catherine-I had to steal it)

Adriana-don't you hate that! You do all the work and they look like DH!!!

Nancy Eastwood
Moderator/WA State Co-Coordinator

Calvin-8yrs
Saren-7yrs
Scott-4yrs (PE)
Janie-5/03 (PIH, oligo and low blood flow)
http://www.babiesonline.com/babies/4/4lbs/
paljane8
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Posts: 1416
Joined: Fri Apr 04, 2003 02:17 pm

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