June Congenital Limb Diff Chat

Time: 8:00 PM EST   This is the time zone for Baltimore , MD or Washington , DC

Place: http://www.chatzy.com/600868137410  (http://www.chatzy.com/limblength)

Temporary password: lldtest

Day of chat password: must be requested by email. The password will be the same as last month.

 

If you need a refresher on the instructions or password, please drop me an email.

COMING & GOING: When you enter the room, remember to press "join chat", and let the helpers know if you are lurking (no questions) or not.
When you are ready to leave the chat room, please type in either "/bye" or "/leave"  (be sure to put in the slash). That way you disappear from our waiting list.
ORDER OF QUESTIONS: New chatters and those from an area where it is the middle of the night (eg, Europe) are given preference. Otherwise, we take chatters in the order in which they enter the room, although you may trade your positions among yourselves if you would like.  Remember that you must be *active* in the room when we are taking down the order. Names that are "left over", but timed out are not counted until that person re-enters the chat.

For Dr. Standard's established patients, don't forget - he now has a "Communications Physician Assistant", so if you have routine questions about PT, meds, x-rays etc, it would actually be quicker to contact Allison.  She confers with him every day with a pile of questions, and then gets back to the callers.
X-RAYS: if you are going to send any for Dr Standard to review, please be sure to send them to both him (sstandar@lifebridgehealth.org) and me at this email, so that I can keep track of who has sent them and give him a list ahead of time. If you've mailed us x-rays, please drop me an email so I can keep track. It would also be helpful if you could make sure that you have a copy of the x-rays available to re-email to him, in case he has trouble locating the original email. Alternatively, you can post the x-rays to a site such as Photobucket or Flickr (make sure to make the album public) and then just paste in the address of the album when it is your turn. That really helps to speed things up. If I have to re-forward x-rays to Dr. Standard during the chat, I will send them to his HOME email address to speed up the process; if this is a problem for you, please let me know.

Internet/Chatzy problems: These seem to have been minimized, however, If there is a chatzy problem again, and people cannot get into the room for a half hour, we will consider the chat canceled.   If we hear of any outages we will try to post what we know on the ICLL Facebook page -http://www.facebook.com/limblength  

Hope to see you on Thursday. And if possible please RSVP to this email one way or the other so that we have an idea of how many to expect and how to pace the chat

 

Please include a brief  history so that we know it's not one of  the "I want to be taller" emails that we sometimes get.

JP's story

We found out at my 20 week ultrasound that our 2nd unborn son had "something wrong". We were told his right leg didn't "look right" and was missing a bone and the other bone was significantly shorten. We were completely devastated like any parent and were sent for additional testing. We were sent for an amnio the next day to make sure we found out the full story of what was wrong with our baby. After a battery of test and a ton of research on our part, we learned our precious unborn child had Fibular Hememilia. At first we were lost and uncertain of our child's future. We were so sad to learn our 2nd kid would not be "normal", but then we came across a lot of encouraging information- a blog called "No Fibula, No Problem" and Sinai's Rubin Institute of Advance Orthopedics, which showed us our child would learn to sit, crawl, and even walk as a "normal child". We were overjoyed by this and joined in the RIAO chats to learn more about our child's condition, what he would have to go through and the normalcy of living with a child with FH.

Once our beautiful baby boy, Jonathan Paul arrived in February 2012 and we learned quickly that we had nothing to fear, just a hard road to walk thru. JP was born a healthy and "normal" child and score high on his apgard  test, but learned that he did boarder the mild to sever line of FH  with a discrepancy of 17 cm at maturity. JP is in need of ankle reconstruction and tibia straighten at the tender age of 18 months and then will have to undergo at least 2 lengthening surgeries, but we learned he can walk without issue and that was all we needed. At that point we decided to pursue the lengthening journey and connect with others that have chosen such to help encourage us. We came across a couple of FH sites that helped build our conference and connect us with other parents experience various FH journeys, which helped us get through. As we move forward with JP's journey,  we learned it won't be easy and the poor kid will have a long and hard road, but will dance and jump, etc like any other child.  As we approach his first birthday and his first surgery...we are excited that he's exploring, cruising and slowly building confidence while standing. We know it won't be easy, but we feel that the best option  for our family was to choose lengthening at this time and we are so encouraging by other's stories.

Please feel free to continue to follow JPs journey at www.thegiosas.blogspot.com or like us on facebook at https://www.facebook.com/MilesForJp


Let me know if you have any questions and thank you for letting us share our story :)

Alison

Fixator Covers

One of our moms, Amy is making fixator covers & modified clothing. I've attached her business card here as well as on our resource page.