Hi everyone! First things first, thank you to theophania for creating this board. I requested it to be added so that those of us who have children with physical differences have a place to chat, ask questions and provide support to one another. Finding out that my son was going to be born with a birth defect was a shock and navigating my way through treatment options and doctors and insurance and everything else was pretty overwhelming at times. The support I received from other parents in a similar position made it a little easier, so I figured that there were others out there who could benefit from a community like this too. Welcome!
typeset, the Special Needs community you all have built is wonderful. I've lurked for a few years and posted occasionally at the other place. I thought that having a dedicated space to discuss birth defects and physical differences would be a positive addition and would help to connect those of us in that position.
@kitchen, you can post wherever you're comfortable posting. I have a June '12er too, born with unilateral clubfoot.
For my situation, I didn't feel that the Special Needs board was a good fit for me because my son had a relatively easy to treat birth defect. In fact, when I first posted at the other place I was directed to Baby Center because they had more specialized groups. If this board doesn't end up being active then I'm fine with it being removed but I think that having it here could help others. I guess we'll see!
Post by pinotgrigio on Jun 8, 2015 15:26:11 GMT -5
I just realized this board was here! My son was born with some physical issues which include missing ribs and missing his left thumb. We've had some surgeries and he's doing well. There will probably be more spine surgeries down the road but we got the all clear for 2015 at least
TTC'ed #2 for 2 years DOR, AMH = 0.24 November 2014 - IVF #1 converted to IUI - BFN January 2015 - IVF #2 converted to TI - BFN March 2015 - IVF #3 finally made it to ER. 3dt of one embryo - BFN June 2015 - IUI with new RE - BFN August 2015 - surprise non-medicated cycle BFP!!! EDD: May 2nd
soultrane - Thanks He's doing really good. He has been going through the Ponseti method. After casting, he was lucky enough to avoid having his heel clipped. At 6 months, they determined he was doing really well and didn't need to wear the brace all day long. Now he only wears it when sleeping. He has been in heaven having his legs free. So now it is just a waiting game to see if things change as he continues to grow. I think our doctor said they tend to notice the most issues of relapse between 2 and 3 years when they are growing so fast.
Awesome roo1582! My guy just turned 3 in June and is doing really well. He was also one of the lucky ones who didn't need a tenotomy! At this point, his brace is just a part of his bedtime routine and he is super mobile with or without it. He crawls up the stairs with it on, walks around the living room with it, so it doesn't seem to bother him at all. We have noticed a very slight difference in his right calf muscle recently, but it's really only noticeable to us and to his doctor because we know to look for it. His motor skills are right where they should be and his dorsiflexion is outstanding so we're hopeful that we won't have to deal with a relapse, but I guess time will tell.
It's so great to meet another clubfoot parent here!
Post by Stormtroopooper on Feb 23, 2016 22:28:28 GMT -5
Hi. I'm glad to have found this board. My son was born with bilateral cataracts. He's worn contacts since he was 7 weeks old. He's almost 3 now, and we just found out he also has astigmatism. They prescribed bifocals for him to wear over the contacts. I'm nervous about the added stress of glasses with the contacts.
He is otherwise a healthy little boy, and I always felt weird about posting on SN.
It's not that I don't consider my son to have special needs, but I lost my nephew to brain cancer. I've seen the worst, and compared to that, dealing with my son's needs is a cakewalk.
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