Going to Riley's...(long)

FinallyMrsBMW

I just got a call this morning from our peditrician and he has arranged an appointment for us to take our DD down to Riley's Children's Hospital to meet with a specialist at the bone dysplasia clinic in August.

My DH has a bone condition called osteogenesis imperfecta which is a brittle bone disorder.  Basically, he breaks bones very easily especially as a child.  There are different types of the rare disorder and luckily his is the mildest form.  Some of the others result in death of the fetus.

While I was pg with Madelyn, we saw a genetic counselor because I was worried about DD having it and needing to deliver via a c-section for fear of a break during delivery.  Luckily, they told us that I could deliver vaginally even if she had it without fear of a break.  They also told us that for each pregnancy it is a 50/50 chance of the baby having the disorder.

Our DD has been born perfectly healthy and has had no signs of a break although her bones are still too soft to tell if it could be a problem in the future.  She shows no other side symptoms either, but we are still worried.

She is going to go down to Riley's to meet with Dr. Weaver there to be tested for the disorder.  I pray that she does not have it and that she will live a life free from the broken bones that my DH had as a child (and now as an adult).  If she does have it, I pray that we are able to give her a normal life and that we don't restrict her too much in her activities but we keep her as safe as possible.

Please keep her in your thoughts and prayers as we hopefully get some reassurance that she doesn't have this disorder!  Thanks!

SuenJon

Keeping you in my thoughts and prayers during your visit to Riley's.  I have a friend who will be 35 this October with OI and she is a true inspiration to everyone who knows her.  

 I love your signature picture...Madelyn is beautiful.

 

Sue in Ohio

SusieDMB

I hope your visit goes well!

mbs427

Thoughts and prayers to you all 

Dr. Weaver is a great doctor...I used to work in the NICU at Riley, and he would do consults on our unit 

mrs.melluvslogan

You will definitely be in my thoughts!

indybride4.8.06

Prayers and best wishes to you.  I hope that through testing, you find out that she does not have the disorder.  I'm sorry you have to go through this and wish you the best!  Good luck in August!

iucarrie

Definitely will be thinking of you guys!!!  She is a cutie

lemen99

sendings of prayers for good results and that Madelyn is healthy!

FinallyMrsBMW

Thanks for the T&P!  I'm glad to hear that someone has had a positive experience with Dr. Weaver.  I did some google stalking since this morning and he sounds like he is quite the specialist!

Carmela752

I don't work at Riley, but I have also heard good things about Dr. Weaver. I hope you get good news and good information at your visit!