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Old 04-05-2013, 04:44 PM   #1
dacky041208
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Baby Dacky IS HOME Update pg 9 post 133

Hey Everyone,

I didn't want to completely go off topic in the kids and family swap but wanted to share our news with my disboards friends so I started a new thread.

As most of you know, DH and I are expecting. We went into this week with more excitement than a night before a trip Disney World- we had our 20 week anatomy scan on Tuesday. I did share the news in the swap but if you don't know baby dacky's gender or do and still want to see the cute Disney-filled video my DH put together, check it out here:

http://www.youtube.com/watch?v=MEbuX_gZl9I

Now onto the reason I asked for lots of P&PD. We found out on Tuesday that Baby Dacky had the possibility of skeletal dysplasia- possibly dwarfism (think Little People, Big World or Little Couple on TLC). They weren't sure but saw that the arms/legs weren't measuring correctly and that there was some major curving to the bones.

We held out hope that they were incorrect in what they saw and met with a specialist on Thursday. That office performed an ultrasound for well over an hour and sadly confirmed that our baby does have skeletal dysplasia- specifically osteogenesis imperfecta or commonly known as brittle bone disease.

Baby Dacky has a long battle ahead. His arms are in better shape than his legs; there are some bones of his legs that are at 90 degree angles when they should be straight. I could get an amnio to verify what type it is, but we may just wait until the baby is born to figure that out and avoid any other risks.

I'll be closely monitored over the next 4 months and am now looking at a c-section. I've already started contacting specialists and pediatricians to help us understand what we are facing with our son.

Although it's all been a lot to digest, and has dulled our excitement a bit, it's still thrilling to know we are going to be parents. We know we are strong people and that God chose us for a reason.

I'm truly grateful for all the support, thoughts, P&PD and love you ladies send our way. And obviously, am grateful for the distraction of swapping.
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Expecting Baby Dacky August 2013


-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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Old 04-05-2013, 05:26 PM   #2
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is his mind OK?? if the brain is fine then the rest can be dealt with
there is a guy in college here that is a dwarf(sp??) he is one of my favorite students, always a happy person, reg size girlfriend so being short isn't slowing him down at all
you can deal with this - things will be wonderful for you (at least you won't be the shortest person in your family like I am now - so always a good thing about everything)

deep breath - it is going to be alright
again
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Old 04-05-2013, 06:02 PM   #3
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Well Dacky you know you have all kinds of support on the home front and with all your DIS-Aunties!!

It's so good to hear that you are getting ready to handle this and are getting in touch with specialist and pediatricans and getting answers to your questions. (I was in a situation similar to you with our DS16.. my test came back off, we did an ammnio and had questions asked and answered.. our DS16 was not born with the issue they had thought he had).. You and DH are going to be ROCK-STAR parents!!

If you need anything, feel free to let any of us know.. We are all here for you and Baby boy Dacky!!!
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Old 04-05-2013, 06:09 PM   #4
JohnsonsLoveDisney
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Hugs to you!
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Old 04-05-2013, 09:44 PM   #5
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Sending prayers your way! May you continue to enjoy your coming joy no matter what comes your way.

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Old 04-06-2013, 09:31 AM   #6
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to you and your family! I know there is a lot to digest right now, but I think its a good idea to start meeting with the specialist now, so you will be ready to face whatever challenges the coming months bring. Just know that we will be here for you as you face those challenges and celebrate the successes! I will be praying for you!
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Old 04-06-2013, 09:50 AM   #7
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Sending prayers your way.

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Old 04-06-2013, 09:54 AM   #8
dacky041208
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Thank you so much, ladies!!! I am so grateful for the amounts of kind and encouraging words I've heard recently. I'm sorry for my delay in responding; we went out with friends last night to dinner and a comedy theatre show- a nice break from reality but man, we stayed out late! lol I can't handle 11pm anymore haha

Quote:
Originally Posted by Reddy View Post

is his mind OK?? if the brain is fine then the rest can be dealt with
there is a guy in college here that is a dwarf(sp??) he is one of my favorite students, always a happy person, reg size girlfriend so being short isn't slowing him down at all
you can deal with this - things will be wonderful for you (at least you won't be the shortest person in your family like I am now - so always a good thing about everything)

deep breath - it is going to be alright
again
Yes as far as we know, his brain is developing normally. We'll know more when he's born but we're definitely praying that it is.

The thing that's concerning is how his bones are brittle- he'll deal with lots of broken and fractured bones that will occur frequently and easily- we'll have to be very careful of how we even handle him.

It's a long road ahead for sure, but I feel like we're getting stronger every minute.
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Expecting Baby Dacky August 2013


-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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Old 04-06-2013, 10:12 AM   #9
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Sending hugs to you and your DH!

There are lots of support groups around with parents who are in your situation. I am sure your pediatrician will give you a few in your area. You are heading off to a great start getting the information you need.

I agree with Nan, you are both going to be ROCK-STAR parents!
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Old 04-06-2013, 12:23 PM   #10
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*hugs* If you need anything let us know. Prayers and pixiedust for you guys.
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Old 04-06-2013, 03:09 PM   #11
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sending Big and many prayers your way...you are going to be great parents and your little man is lucky to have you as his parents! you are being smart in getting prepared now and learning everything you can to help him and yourselves now and after his arrival.

you know we are here for you anytime


I just watched the video...I loved it! what a wonderful way to find out what you are having!
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Old 04-06-2013, 07:59 PM   #12
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We are all sending big hugs from my house. Having bad news during a pregnancy is so hard to handle but things will get better once he gets here. Once they see him, it will be easier to evaluate the situation. I know it's not the news you were expecting nor what you were hoping for but know that you will be a wonderful mommy and both of you will be very good parents for this little one. He is one lucky ducky to have parents like you. If you need anything or need shoulder to cry, know that we are here for you.
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Old 04-06-2013, 08:25 PM   #13
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Thank you for sharing your news with us. Approximately 3 yrs ago, these same wonderfully supportive folks kept my dd in their prayers as she went through a very difficult pregnancy with my granddaughter. I am certain that their prayers and support helped carry me through...
I echo their thoughts that your child will be so blessed to have you both as his parents. I will be sure to include you all in my prayers. Big hugs.....
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Old 04-07-2013, 09:43 AM   #14
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Hugs for all of you as you deal with this. I know that you will be wonderful parents to him. the fact that you know ahead of time while hard will be such a blessing as you can now get the information that you need to help prepare for a very special young man.

You will all remain in my prayers even if I'm not on the boards as much as I'd like to be.
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Old 04-07-2013, 09:52 PM   #15
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Sending hugs your way. The important thing is that you are able to reach out to people now to help you prepare. We are all here for support also. Make sure you ask when you need a shoulder or even an ear. There are a great bunch of ladies here to help you through everything. As mothers we feel we are invincible. I'm a Mother/baby nurse and see it with new moms all the time. Remember we are here.
I loved your video.
Your little boy will have lots of family to love him and support you as well.
You will be great parents!
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