Janie update

So, the baby's born, what comes next? Discuss your postpartum and parenting concerns here.
paljane8
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Posts: 1416
Joined: Fri Apr 04, 2003 02:17 pm

Re : Janie update

Postby paljane8 » 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/

hutced
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Posts: 263
Joined: Thu Oct 09, 2003 01:59 pm
Location: Acworth, GA

Re : Janie update

Postby hutced » 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/

momathelete
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Posts: 227
Joined: Mon Apr 21, 2003 08:58 pm

Re : Janie update

Postby momathelete » 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

mom2gigi
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Posts: 198
Joined: Thu Feb 26, 2004 09:03 am

Re : Janie update

Postby mom2gigi » 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.

paljane8
Registered User
Posts: 1416
Joined: Fri Apr 04, 2003 02:17 pm

Re : Janie update

Postby paljane8 » 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/

ann marie
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Posts: 1034
Joined: Fri Jan 02, 2004 03:37 pm

Re : Janie update

Postby ann marie » 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

mom2gigi
Registered User
Posts: 198
Joined: Thu Feb 26, 2004 09:03 am

Re : Janie update

Postby mom2gigi » 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.

paljane8
Registered User
Posts: 1416
Joined: Fri Apr 04, 2003 02:17 pm

Re : Janie update

Postby paljane8 » 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/

paljane8
Registered User
Posts: 1416
Joined: Fri Apr 04, 2003 02:17 pm

Re : Janie update

Postby paljane8 » Mon Apr 26, 2004 10:52 am

Well, thanks to you all! I am just overwhelmed by the support and e-mails. You are the greatest group of people and I will never forget your kindnesses.

Yeah, I think it is just a blood draw. I know it takes a while (like over a month) to get the results back. But, I don't know that much about it yet. We are waiting for a call from Children's to schedule it and their eval. I wanted to do it at UW but, they referred us to Children's. Janie has some facial characteristics like a flat bridge to her nose, eyes far apart, wide forehead and narrow chin that are common in syndromes. There are some other things too, but, those are the main ones. Her low muscle tone, oral low tone and delays are also found in syndromes. She meets with another team tomorrow to do more testing on her motor, play, behavior and social and cognitive skills. I have kind of processed the initial shock, so I am a lot better with things now.

But, again, thank you so much for all of the support. I feel you are sent by God; like you are His hands.

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/

momathelete
Registered User
Posts: 227
Joined: Mon Apr 21, 2003 08:58 pm

Re : Janie update

Postby momathelete » Sun Apr 25, 2004 07:38 pm

Nancy,

I am hoping and praying that everything goes ok with Janie. Being a little peanut isn't so bad; I pray that she is just that. You hang in there my fellow diva. You have a whole bunch of us here for you. Cyber hugs and real hugs go a long way. Please keep us updated if you are able to. I wish I could do more than wait for results. Major praying is going on in this corner!!!



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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