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Old 04-10-2013, 08:21 AM   #31
PrincessNancy96
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I hope you are able to get an appointment time soon with CHOP!!
Continued prayers and pixie dust.. and I agree with Buffy.. you are a realist, not a pessimist.. I do the same thing as you.. I expect the worst and then am relieved when it's not as bad as I expected.

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Old 04-10-2013, 02:55 PM   #32
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I hope you get another appointment soon. hugs
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Old 04-10-2013, 06:31 PM   #33
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So after talking with the people at CHOP yesterday, and finding out they have no openings for months, we told our employers the situation and they accommodated us with smiles on their faces. We're so very lucky for all the support we continue to receive!

We took the appt for this morning at 9am at CHOP and spent about an hour with the doctor there. Sadly, the specialist who informed us that we are looking at osteogenesis imperfecta dropped the ball and still hasn't sent the records as I requested on Friday. After the doctor called them and spoke to that doctor, I then got a call from the secretary slapping me on the hand again through voicemail about how I "am not following their protocol" and "it'll get done in the appropriate medical timeline". AKA They feel like the jerks they should.

I know they are busy. But when you tell me to contact doctors to get info and not search the internet, and then I do just as you recommended, you're really going to talk down to me? So my next appt with them should be nice and awkward....haha

So back to today's appt....they told us a lot of what we know based on the O.I. foundation website. They obviously couldn't confirm if it definitely is O.I. because they didn't have the ultrasounds, but going by what we told her and what the specialist told the her, she agrees it sounds like O.I..

They are quite certain this happened due to a mutation and is not likely to happen again if we choose to have more children. They said it's a 1 in 100,000 chance! (We should play the lottery) They can verify that it's a mutation after our son is born and can test his blood.


They gave us some contacts that are local to the Philly area that have children with ** so I'll be calling them soon seeking advice.

We shared the news on facebook tonight, here's a link to the video we put together
http://www.youtube.com/watch?v=4DqZix3zoZ8

Thank you so much for the continued P&PD, virtual hugs, and secrets threads that I'm not aloud near. You ladies know how to make both DH and I smile even when we are having a sad moment.

<3
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-2 weeks at AKL, thanks DVC! 6/19-7/2/2011 Pictures/Video: Part 1 Part 2
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-1st Anniversary Trip at AKL 6/23-6/30/2009
-2 week Disneymoon at CSR 5/28-6/11/2008

Last edited by dacky041208; 04-10-2013 at 07:18 PM. Reason: abbreviations that weren't inappropiate were stars so I corrected that
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Old 04-10-2013, 07:05 PM   #34
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Bless your heart Dacky!!
I'm glad to hear your DH's and your employer were so understanding to allow you to get to this appointment today.

As for the appointment I'm so sorry that your drs. office decided not to play nice and forward that information. Here you are doing what they suggested and they are being difficut. As for that nurse/receptionist leaving that voicemail, I would be discussing this with the doctor directly.. just in case he/she doesn't realize they left that nasty message.. so, they dropped the ball.. admit it was missed and apologize...

I hope you are able to call some of the families in your area to get their perspective and how things work.. I'm sure there is a support group you can join in/around your area!

Many hugs to you... I need to watch both videos tomorrow.. I have not had the opportunity... but tomorrow I will watch them both.. I have my kleenex ready... I'm the worry wart and cry-baby of the boards.. I cry at everything...

Again, many hugs and prayers being said for all of you.. You are in my thoughts!!
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Old 04-11-2013, 10:10 AM   #35
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Vicky, so wonderful that your employers were understanding and supportive so you could get to the appt!!! wow, can't believe the rudeness from the secretary! hope they get the records and results to the specialist so you can move forward with what is needed to be done!

watched your second video, was in tears....the strength you and your DH have is so inspiring Baby Dacky is so loved and cherished!

continued prayers for you all
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Old 04-11-2013, 11:32 AM   #36
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Dacky,

Both videos are amazing!!! Your little one is going to definitely be loved!!!!
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Old 04-11-2013, 12:13 PM   #37
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Beautiful videos! This baby is very lucky to have such amazing parents. As for the drs, too bad for them. You are allowed to do as you see fit and if you need to step on toes, so be it! hugs
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Old 04-11-2013, 04:47 PM   #38
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(hugs), prayers and pixie dust. You little guy is lucky to have such special parents. You are an inspiration!!!
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Old 04-17-2013, 10:03 PM   #39
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Hello, I am new to the scrapbooking boards, but wanted to share that 26 years ago, the surgeon who operated on our toddler son was a wonderful woman, highly recommended by other Nurses I worked with at the time. Somewhere I all the preop or post op conversations, it came up that she had a daughter with **. I had heard of it in school, but she gave us a more personal view. I believe at that point, her daughter was in High School. I remember her remarking that she was anticipating her daughter going away to college, and that with some overall precautions, the daughter had done remarkably well getting to this point of freedom.

Thought it might be helpful to hear a long term view.......God Bless, wishing all of you an equally smooth sailing with your baby! Deb in NY. That is weird it edited out the name of the disease, maybe because I used the initials?
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Old 04-18-2013, 07:19 PM   #40
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Quote:
Originally Posted by DisneyBelle99 View Post
Hello, I am new to the scrapbooking boards, but wanted to share that 26 years ago, the surgeon who operated on our toddler son was a wonderful woman, highly recommended by other Nurses I worked with at the time. Somewhere I all the preop or post op conversations, it came up that she had a daughter with **. I had heard of it in school, but she gave us a more personal view. I believe at that point, her daughter was in High School. I remember her remarking that she was anticipating her daughter going away to college, and that with some overall precautions, the daughter had done remarkably well getting to this point of freedom.

Thought it might be helpful to hear a long term view.......God Bless, wishing all of you an equally smooth sailing with your baby! Deb in NY. That is weird it edited out the name of the disease, maybe because I used the initials?
Hi Deb,
Thanks for this! It's totally awesome to hear her daughter was able to (or at least planning) going away for college. We're constantly thinking of the what ifs and future...more so than the "right now" and "in the next year".

It totally edited out the initials for me too! I went back and put in periods bc I didn't want people to think I was cursing hahaha. but that's totally for some reason edited it. weird disboards!

We're talking to CHOP now about setting up an evaluation for my c-section to take place there. They believe I'm a good candidate for it! Although I'd rather be closer to home, it'd be good for baby.
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-First Time during the holidays at PC!! 11/18-11/22/2010
-First DVC Trip to SSR 7/29-8/7/2010
-1st Anniversary Trip at AKL 6/23-6/30/2009
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Old 04-19-2013, 07:40 AM   #41
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I think your baby is LUCKY God chose you as his parents. Your video is amazing: someday your son will know how loved & wanted he was from the first moment you met. I send continued prayers.
I am always amazed by how territorial & "junk yard dog" some doctor's offices act. Just admit you dropped ball, apologize & send the records NOW! Keep yourself cool, calm & collected. You are right & they are so wrong on this one! So sorry you are dealing with these attitudes from supposed professionals.
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Old 04-19-2013, 10:19 AM   #42
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Vicky, hope you will be able to have your c-section at CHOP, better to be at the best place for Baby Dacky!

am keeping you and your little man in my prayers
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Old 04-19-2013, 12:38 PM   #43
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Glad you were able to keep the appointment at CHOP, boo to the not nice woman at your DR's office. She should admit they made a mistake, correct it and move on!

Hopefully the famlies in the support group will give you a better picture of what to expect and help you better understand and prepare.

We are keeping you in our thoughts and prayers.
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Old 04-19-2013, 02:03 PM   #44
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Lots of prayers and pixie dust for Baby Dacky! The first video was amazing! I could not get the second video to load, but I am sure it was just lovely. As someone with disabilities, be strong, be honest with you child, and know that you can do this.
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Old 05-05-2013, 11:56 AM   #45
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So we ended up getting our appointment with CHOP, and it ended up being an all day event this past Thursday. We met with genetic counselors, they did an echo on the baby and then we had a 2.5 hr ultrasound (baby was stubborn!) followed by a meeting with 2 doctors, a head nurse, and a genetic counselor.

My nightmare came true when they said that his condition is worse than first thought- not only does baby dacky have fractures in all the bones of his arms and legs, but they are now seeing fractures in his ribs too. This is extremely bad news as they aren't healing correctly and may limit his ability to breath on his own when he is born.

They believe he has type 2 O.I., not type 3 as first thought. Type 2 is lethal.

They are really pushing for the amnio but after speaking with a support group we found on facebook, both DH and I are still against the idea. They want to do the amnio because if it is confirmed type 2 then we'd have a natural delivery so I can "have the time with him while he's alive". If it's a severe type 3, then we'd continue with the planned c-section.

I feel like the amnio would confirm his death and I'm against the idea. Although type 2 is extremely severe, there are type 2ers who are alive.

The support group also has 20+ similar stories to this: they were told the worst news, recommended to terminate, trusted God and their gut and have beautiful children to show for it.

We refuse to give up.

We're talking to Dupont Children's hospital now to see about options there. Although I think we'll be able to deliver at CHOP, I'm afraid they won't fight for him like they need to.

Anyway, on a related note, if you have any yellow in your closet, wear it tomorrow, please? May 6 is known as Wishbone Day and is an international day of awareness of O.I.. Spread the word. If you do wear yellow, please take a picture and send it my way. I can pm you my email if you need it.

Our baby will live. We're determined for that. We plan to make a scrapbook of all our friends and family around the world who send us pictures. We want him to know that even before he came into this world, he was loved and supported by many.

Thanks ladies.
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-2 weeks at AKL, thanks DVC! 6/19-7/2/2011 Pictures/Video: Part 1 Part 2
-Pixar Weekend at ASMu 5/12-5/16/2011
-First Time during the holidays at PC!! 11/18-11/22/2010
-First DVC Trip to SSR 7/29-8/7/2010
-1st Anniversary Trip at AKL 6/23-6/30/2009
-2 week Disneymoon at CSR 5/28-6/11/2008
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