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jillee03
LIF Adult
Member since 8/05 953 total posts
Name:
Jill
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8/8- update on MemorialDayBride12
I’m so happy you had s great Christmas. I can understand the struggle and know it’s a tough situation for others when getting gifts. Just know he is always in your heart and he’s your family’s angel watching over everyone especially his brothers
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Posted 1/4/18 6:52 AM  |
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Long Island Weddings
Long Island's Largest Bridal Resource |
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Re: 8/8- update on MemorialDayBride12
How's it going?
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| Posted 2/19/18 11:41 PM |
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Re: 8/8- update on MemorialDayBride12
Hi ladies,
I can’t believe I’m here again with bad news. Baby b who went through NEC and survived twice is now getting bad news yet again.
We went to a pediatric neurosurgeon because he had a bump since the NICU and it’s getting bigger and also he has a flat head in the back because he layed on it for 115 days in the NICU. The doctor said he bump is fine and it’s totally okay which is good news, and he will need a helmet Which isn’t even bad news.
Here is the bad news... the doctor truely believes he has metopic craniosynostosis. Which basically is when there is too much pressure on the brain and if we don’t do brain surgery he will be retarded, have stroke like symptoms, and could be blind. The surgery is major, they said he will need multiple blood transfusion and it’s a long surgery. I have to get a cat scan once the pre certification goes through and once we get it the doctor will call us in and tell us if he has it or not but he was pretty sure he does.
We can’t catch a break. We are so upset. 
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| Posted 2/20/18 8:33 PM |
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Re: 8/8- update on MemorialDayBride12
Oh my god I'm so sorry to hear this!
Sending sooo many hugs and prayers
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| Posted 2/20/18 10:46 PM |
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babydreams21
LIF Adult
Member since 12/12 3656 total posts
Name:
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8/8- update on MemorialDayBride12
I'm so sorry to hear your update. He is such a fighter. I hope the surgery goes well.
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| Posted 2/21/18 10:22 AM |
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StaceyWill
It's a girl!!!
Member since 6/10 21539 total posts
Name:
Stacey
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Re: 8/8- update on MemorialDayBride12
Oh no. I'm so sorry to hear this. I hope the doctor is wrong, but if hes not I pray for a safe surgery and super speedy recovery. You are all so strong!! Many prayers for your family! 
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| Posted 2/21/18 10:42 AM |
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8/8- update on MemorialDayBride12
I am so so sorry you’re going through this. I send you prayers and hope that life stops throwing you curve balls!
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| Posted 2/21/18 11:44 AM |
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luvmykids8
LIF Adult
Member since 9/15 2050 total posts
Name:
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8/8- update on MemorialDayBride12
Many prayers for your family.
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| Posted 2/21/18 1:28 PM |
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Ellsey10
LIF Adolescent
Member since 1/15 614 total posts
Name:
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8/8- update on MemorialDayBride12
So many prayers for your family. I am so sorry to hear this. Good luck to your family and I really hope the doctor is wrong.
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| Posted 2/22/18 9:21 PM |
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Momma2015
Mommax2
Member since 12/12 6656 total posts
Name:
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Re: 8/8- update on MemorialDayBride12
I'm so sorry to hear this. 
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| Posted 2/23/18 7:59 AM |
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Re: 8/8- update on MemorialDayBride12
Update after cat scan results:
Hi ladies,
Thank you again for your prayers and good wishes. So the cat scan results indicate that he has a mild version of metopic craniosynostosis however the surgeon said he still fits into the category for surgery. I definitely am going to get a second opinion. He also is sending me to his plastic surgeon to meet and discuss with him also. He wants to be clear if they both are on the same page for surgery.
He is confusing me because Wednesday he was so certain that he needed surgery and yes while the cat scan results proved him to be correct he said my sons case is mild and he has seen much more severe cases.
So now I’m confused as if this is strictly cosmetic why put my son through this? I definitely have to get a second opinion so I can understand this better and see if this is in fact a necessary surgery to do. Thank you for all your prayers. I will continue to update as this all unfolds..
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| Posted 2/23/18 8:50 PM |
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jillee03
LIF Adult
Member since 8/05 953 total posts
Name:
Jill
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8/8- update on MemorialDayBride12
very sorry to hear this. But he's been a fighter since day 1 and he will continue to fight. prayers!!!
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| Posted 2/24/18 11:57 AM |
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BabySurprise
LIF Adolescent
Member since 9/13 556 total posts
Name:
Me
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8/8- update on MemorialDayBride12
I hope he will not have to have the surgery. Poor little man! Many prayers for you guys.
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| Posted 2/24/18 11:04 PM |
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babydreams21
LIF Adult
Member since 12/12 3656 total posts
Name:
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8/8- update on MemorialDayBride12
Definitely get second and third opinions. This seems like better news than expected so hopefully a good step. I hope you get some answers soon.
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| Posted 2/25/18 10:38 PM |
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Re: 8/8- update on MemorialDayBride12
Update:
Going Friday to CHOP for a second opinion. Will update you all. Thanks for the love and support 
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| Posted 2/28/18 11:10 PM |
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bunnyluck
LIF Adult
Member since 1/14 3196 total posts
Name:
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8/8- update on MemorialDayBride12
Sending prayers!
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| Posted 3/1/18 11:21 AM |
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Re: 8/8- update on MemorialDayBride12
Wonderful update:
Wow!!!! Wasn’t expecting this update!!! CHOP was amazing and I would recommend them to anyone! We got really great news! The neurosurgeon and the plastic surgery both agree that does not have metopic craniosynotosis and that he does have a ridge but that people can have ridges. Also he said that His sutter is still open only closed a little, but it should be closing soon due to his age, and that was normal. The doctors where we live told us that His sutter was completely closed which is not the case. We are beyond thrilled that we went and got a second opinion and didn’t put our son through this horrific long surgery especially when he DIDNT need it!!
The plastic surgeon did recommend a helmet for His flatness and we will go back to CHOP on three months to have it rechecked. We are so happy thank you for all your thoughts, love and prayers!!
Message edited 3/2/2018 4:27:48 PM.
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| Posted 3/2/18 4:27 PM |
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Laraaidan
LIF Toddler
Member since 6/17 450 total posts
Name:
Lara&aidansmommy
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Re: 8/8- update on MemorialDayBride12
Posted by MemorialDayBride12
Wonderful update:
Wow!!!! Wasn’t expecting this update!!! CHOP was amazing and I would recommend them to anyone! We got really great news! The neurosurgeon and the plastic surgery both agree that does not have metopic craniosynotosis and that he does have a ridge but that people can have ridges. Also he said that His sutter is still open only closed a little, but it should be closing soon due to his age, and that was normal. The doctors where we live told us that His sutter was completely closed which is not the case. We are beyond thrilled that we went and got a second opinion and didn’t put our son through this horrific long surgery especially when he DIDNT need it!!
The plastic surgeon did recommend a helmet for His flatness and we will go back to CHOP on three months to have it rechecked. We are so happy thank you for all your thoughts, love and prayers!!
Praise God!!! Time to change your sons doctor!
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| Posted 3/2/18 4:56 PM |
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luvmykids8
LIF Adult
Member since 9/15 2050 total posts
Name:
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Re: 8/8- update on MemorialDayBride12
Posted by MemorialDayBride12
Wonderful update:
Wow!!!! Wasn’t expecting this update!!! CHOP was amazing and I would recommend them to anyone! We got really great news! The neurosurgeon and the plastic surgery both agree that does not have metopic craniosynotosis and that he does have a ridge but that people can have ridges. Also he said that His sutter is still open only closed a little, but it should be closing soon due to his age, and that was normal. The doctors where we live told us that His sutter was completely closed which is not the case. We are beyond thrilled that we went and got a second opinion and didn’t put our son through this horrific long surgery especially when he DIDNT need it!!
The plastic surgeon did recommend a helmet for His flatness and we will go back to CHOP on three months to have it rechecked. We are so happy thank you for all your thoughts, love and prayers!!
Great news! Thank God!
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| Posted 3/2/18 8:03 PM |
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babydreams21
LIF Adult
Member since 12/12 3656 total posts
Name:
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8/8- update on MemorialDayBride12
Great update!!!
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| Posted 3/2/18 8:32 PM |
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Re: 8/8- update on MemorialDayBride12
Sooo glad to hear!!! I kept checking back waiting for you to write back!!
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| Posted 3/2/18 10:21 PM |
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BabyBearA
LIF Adult
Member since 7/11 1254 total posts
Name:
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8/8- update on MemorialDayBride12
Wonderful news! Thank God!!!!
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| Posted 3/3/18 4:46 PM |
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Re: 8/8- update on MemorialDayBride12
Posted by anonymoususer
Sooo glad to hear!!! I kept checking back waiting for you to write back!!
Yes!! Thank you all so much!!! You continue to pray and show care and that’s what is getting me though the difficult times. I know I don’t know you all personally but THANK YOU from the bottom of my heart! It means so much that you all care about my sons so much!! Praise god!
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| Posted 3/3/18 10:18 PM |
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Momma2015
Mommax2
Member since 12/12 6656 total posts
Name:
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Re: 8/8- update on MemorialDayBride12
So glad to hear the good news!
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| Posted 3/5/18 2:51 PM |
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8/8- update on MemorialDayBride12
Great news! God is listening
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| Posted 3/5/18 7:51 PM |
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