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MichLiz213
Life is Good!
Member since 7/07 7979 total posts
Name:
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Please hug your babies UPDATE page 26
I don't know what to say. I'm so sorry.
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Posted 3/25/16 6:40 PM  |
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Long Island Weddings
Long Island's Largest Bridal Resource |
hmm
Sweet
Member since 1/14 7993 total posts
Name:
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Re: Please hug your babies UPDATE page 26
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| Posted 3/27/16 5:58 PM |
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Naturalmama
Love my boys!!
Member since 1/12 3548 total posts
Name:
Christine
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Re: Please hug your babies UPDATE page 26
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| Posted 3/27/16 10:02 PM |
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ElizaRags35
My 2 Girls
Member since 2/09 20494 total posts
Name:
Me
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Please hug your babies UPDATE page 26
Lila had another eeg from yesterday late afternoon into this morning. Yesterday one of the peds happened to be outside the room when she had one of those "episodes" I had written about a couple of updates ago. They told neuro and they decided to do the eeg. With the eeg, they have a video camera recording and there's a button you can press when you think there is seizure activity. It alerts them to look into what was going on in the eeg during that time. DH was with her overnight and he pushed the button 3x. Neuro came in today to say that lila was not having seizure activity during those times! Such a relief! So they're thinking possibly reflux because she's arching her back during the episode and she's been super fussy and gassy lately.
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| Posted 3/27/16 10:11 PM |
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CallaLily
Thank you, Saint Gerard!
Member since 10/07 4937 total posts
Name:
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Re: Please hug your babies UPDATE page 27
Thank God! Such a great update! 
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| Posted 3/28/16 1:32 AM |
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Please hug your babies UPDATE page 27
Amazing update!!! Go Lila!
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| Posted 3/28/16 6:43 AM |
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Dani
Life is about choices.
Member since 5/05 6532 total posts
Name:
Dani
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Re: Please hug your babies UPDATE page 27
excellent! what a relief. although probably not for poor little gassy lila. 
still thinking and praying for you all! 
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| Posted 3/28/16 9:48 AM |
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ChristinaM128
LIF Adult
Member since 8/12 4043 total posts
Name:
Christina
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Re: Please hug your babies UPDATE page 27
Great update!
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| Posted 3/28/16 10:05 AM |
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StaceyWill
It's a girl!!!
Member since 6/10 21539 total posts
Name:
Stacey
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Re: Please hug your babies UPDATE page 27
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| Posted 3/28/16 10:18 AM |
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Lara&Aidansmommy
For mom i miss u ETC ILOVEU
Member since 3/07 13921 total posts
Name:
ETC I LOVE YOU
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Re: Please hug your babies UPDATE page 27
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| Posted 3/28/16 1:18 PM |
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Faithx2
All good things in 2016!!
Member since 8/05 20181 total posts
Name:
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Re: Please hug your babies UPDATE page 27
Wonderful update. God bless her XO
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| Posted 3/28/16 2:23 PM |
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ElizaRags35
My 2 Girls
Member since 2/09 20494 total posts
Name:
Me
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Please hug your babies UPDATE page 27
We might be going home this week and I have mixed emotions. She's starting to get stuffy again so they're thinking that this waiting for a bed at St Mary's is causing more harm than good since she's being exposed to all kinds of illnesses here. On one hand im obviously thrilled to be going home, to have the 4 of us under one roof, and to have things pretty much back to normal. On the other hand, she needs pt/ot and if we go home, she won't be getting the intensive daily therapy that she would get at St Mary's. She will qualify for EI but who knows how long that will take to set up (several more weeks). One of the big reasons I wanted to go to St Mary's was bc Lila was on the ng tube, now that she's been on full bottle feeds for nearly 3 weeks, I don't know if it's a necessity anymore. I don't know what to think. The other thing is that I'm actually scared to bring her home. I've come to rely on her being in the care of a medical facility 24/7 for the past 40ish days. Every 4 hours I'm assured that she doesn't have a fever, her o2 levels are normal, that her meds are given on time-ish. So yeah. I'm happy, scared, nervous, and excited. We'll see what happens in the next day or 2.
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| Posted 3/28/16 8:09 PM |
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Wishes1111
LIF Adolescent
Member since 12/10 853 total posts
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Please hug your babies UPDATE page 27 again
That's wonderful news!!!! I totally understand your nerves but I think it's great that the hospital staff feels she's ready to go home. As a therapist who worked in EI call NOW even if something changes where you end up going to St Mary's she will still qualify for services once she leaves there so I would start the EI process now. I would also check into if insurance would cover private therapy until EI kicks in etc. good luck & continued prayers for her full recovery
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| Posted 3/28/16 8:20 PM |
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ElizaRags35
My 2 Girls
Member since 2/09 20494 total posts
Name:
Me
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Re: Please hug your babies UPDATE page 27 again
Posted by Wishes1111
That's wonderful news!!!! I totally understand your nerves but I think it's great that the hospital staff feels she's ready to go home. As a therapist who worked in EI call NOW even if something changes where you end up going to St Mary's she will still qualify for services once she leaves there so I would start the EI process now. I would also check into if insurance would cover private therapy until EI kicks in etc. good luck & continued prayers for her full recovery
Social work at the hospital is working on getting EI set up and possible outpatient therapy before EI kicks in, just in case.
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| Posted 3/28/16 8:50 PM |
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DaisyGirl
LIF Adult
Member since 2/08 1650 total posts
Name:
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Re: Please hug your babies UPDATE page 27 again
Great updates. I'm so glad she's not having seizures. It makes sense that you would be nervous to bring her home but she has come so far.
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| Posted 3/28/16 9:08 PM |
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jessnbrian
Only God knows His plan for us
Member since 4/13 7238 total posts
Name:
Jessica
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Please hug your babies UPDATE page 27 again
That's wonderful news! I know it's so not nearly even close to the same but when E was released from NICU B and I were terrified. He had all monitors hooked up 24/7 and he had round the clock care, someone there to watch him and me when I fed him, we were so scared. But it all works out. You are going to be the best care she can get, you know your daughter and if something doesn't feel right, you know you can always bring her back.... But that won't happen because you guys are going to do great! Will you qualify for any home nursing care(not the EI, but a nurse/aide)?
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| Posted 3/28/16 9:26 PM |
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Please hug your babies UPDATE page 27 again
Great news!!!
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| Posted 3/28/16 9:38 PM |
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MrsG823
Just call me Mommy.
Member since 1/11 5570 total posts
Name:
S
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Please hug your babies UPDATE page 27 again
What a wonderful update! It is totally understandable that you are feeling nervous about taking your little girl home- you have been through so much.
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| Posted 3/28/16 9:55 PM |
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Wishes1111
LIF Adolescent
Member since 12/10 853 total posts
Name:
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Re: Please hug your babies UPDATE page 27 again
Posted by ElizaRags35
Posted by Wishes1111
That's wonderful news!!!! I totally understand your nerves but I think it's great that the hospital staff feels she's ready to go home. As a therapist who worked in EI call NOW even if something changes where you end up going to St Mary's she will still qualify for services once she leaves there so I would start the EI process now. I would also check into if insurance would cover private therapy until EI kicks in etc. good luck & continued prayers for her full recovery
Social work at the hospital is working on getting EI set up and possible outpatient therapy before EI kicks in, just in case.
Excellent! Good luck you're going to be great.
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| Posted 3/29/16 8:41 AM |
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ElizaRags35
My 2 Girls
Member since 2/09 20494 total posts
Name:
Me
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Please hug your babies UPDATE page 27 again
We might be getting discharged today! St. Mary's isn't happening anytime soon. They don't anticipate any open beds for the foreseeable future so social work started with a new plan. First they tried to get us into St Mary's outpatient program but apparently only Nassau residents qualify. Then they found out St Charles has an inpatient rehab and they accept pediatric patients and they've accepted Lila! We're just waiting for insurance to authorize. We're so close to moving forward! We've accumulated so much stuff in the 6 weeks we've been here. I had to send DH home with several bags lol. Fingers crossed insurance comes through!
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| Posted 3/30/16 9:14 AM |
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BsMomma2014
Fly high little one
Member since 6/10 2662 total posts
Name:
nicole
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Please hug your babies UPDATE page 27 BIG UPDATE
Amazing News!!! Fingers crossed everything goes smoothly and quickly
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| Posted 3/30/16 9:25 AM |
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StaceyWill
It's a girl!!!
Member since 6/10 21539 total posts
Name:
Stacey
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Re: Please hug your babies UPDATE page 27 BIG UPDATE
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| Posted 3/30/16 9:32 AM |
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buttercup
St. Jude pray for us...
Member since 1/11 2951 total posts
Name:
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Re: Please hug your babies UPDATE page 27 BIG UPDATE
Great updates, and so glad to hear Lila's progress. Continued prayers for your little one..
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| Posted 3/30/16 10:13 AM |
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2BadSoSad
LIF Adult
Member since 8/12 6791 total posts
Name:
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Re: Please hug your babies UPDATE page 27 BIG UPDATE
Great news and a step in the right direction! I can't believe it has been 6 weeks already! Im sure it seems like an eternity to you though. So glad you are moving forward and are closer to the end of the tunnel. Continued prayers for you to have the strength and energy to continue and for Lila to be back to her old self, really really really soon!
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| Posted 3/30/16 10:13 AM |
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mrsm-2011
He is my world!
Member since 6/12 3009 total posts
Name:
Theresa
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Re: Please hug your babies UPDATE page 27 BIG UPDATE
Great News, praying the insurance comes through!!!
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| Posted 3/30/16 10:17 AM |
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| Pages: << 24 25 26 [27] 28 29 30 >> |
