Baby Dacky IS HOME Update pg 9 post 133

[DisNorth]

Hugs and prayers being sent your way. You will be prepared and great parents!
My cousin's grandbaby has had lots of challenges but she told me this: "You never wish for a disabled child but it makes you appreciate every moment and milestone that much more."

 

[Poppins2000]

Prayers to you and your Sweet Baby Boy - I love your video, brought a few tears, beautifully done

 

[morgansmom2000]

Some more hugs and good thoughts headed your way. As you said you were chosen for a reason. I think that reason is because you're strong and your baby boy needs that. Please keep us posted. Hugs hugs hugs!

 

[dacky041208]

Hugs and prayers being sent your way. You will be prepared and great parents!
My cousin's grandbaby has had lots of challenges but she told me this: "You never wish for a disabled child but it makes you appreciate every moment and milestone that much more."

I read that quote to DH and he said he already couldn't agree more. It'll make it all that much sweeter!


My thinking has been a lot for family members- I'm very matter-of-fact and very worse case scenario (wheelchair life, deaf, deformed). I'm praying I'm wrong but I have to be prepared- not only that, but with a pessimist mind, I'll feel like everything that is not as bad as my image will be a blessing.

I'm waiting on CHOP (Children's Hospital of Philadelphia) to figure out a date that we can meet for a consultation- they wanted tomorrow, but told me yesterday! If we weren't doing state testing at my work and if DH's schedule would have accommodated, we would have jumped on it. Hopefully they have an opening for at least one of the dates I gave them! We have to plan for that kind of appt- it's an hour and a half drive!

 

[bearbear]

I love CHOP. My son sees the allergists there and everyone we have encountered has been wonderful. Just top notch.

 

[mommy2mrb]

Vicky, you have such a wonderful frame of mine dealing with everything, staying positive will be such a help to you both! hope you can get the appt .at CHOP soon...a dear friend takes her DD up there for her heart surgeries and loves the hospital and staff there.

continued P & PD

 

[DisNorth]

You will be prepared for the worst, but we will pray for the best! I've heard good things about CHOP, and hope that they can work the appt to a day that works for you.

 

[dsneprincess]

I will be remembering your family in my prayers as well.

 

[jadelane1]

Prayers to the baby and your family. CHOP is a wonderful place. My son sees a urologist and just had surgery there. They are absolutely wonderful. My daughter has been going to one of the gastrointestinal drs for quite sometime now. Things are not going well with her but I have full confidence in the hospital and drs that work there. It is the best place around for you to be. On a lighter note, I have friend whos daughter has brittle bone and her legs are only really for the most part affected. She is a beautiful 9 year old little girl and and has had some set backs here and there but is a very happy little girl with tons of friends. You will be OK, have faith. Sending prayers your way!

 

[BernardandMissBianca]

I read that quote to DH and he said he already couldn't agree more. It'll make it all that much sweeter!


My thinking has been a lot for family members- I'm very matter-of-fact and very worse case scenario (wheelchair life, deaf, deformed). I'm praying I'm wrong but I have to be prepared- not only that, but with a pessimist mind, I'll feel like everything that is not as bad as my image will be a blessing.

Prepare for the worst, hope for the best. You aren't a pessimist, you are a realist.

DS12 has a friend with brittle bone disease, it's not the worst case but he had multiple broken limbs up until a few years ago. While he's on the small side, he is healthy and stronger than he was 5 years ago. He also runs Cross Country with DS12.

We are continuing to send prayers Baby Dacky's way.

 

[PrincessNancy96]

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.

:

 

[3pletprincesses]

I hope you get another appointment soon. hugs

 

[dacky041208]

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

 

[PrincessNancy96]

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!!

 

[mommy2mrb]

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

 

[PrincessNancy96]

Dacky,

Both videos are amazing!!! Your little one is going to definitely be loved!!!!

 

[3pletprincesses]

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

 

[DisneyIsTerrific]

(hugs), prayers and pixie dust. You little guy is lucky to have such special parents. You are an inspiration!!!

 

[DisneyBelle99]

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?

 

[dacky041208]

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.