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Good and bad news

We took both boys the Orthopedist today.

DS1 is severely hypertonic and amazingly (even to the surprise of the doctor) his hips are beautifully formed and located great.  So no worries of hip dysplasia for now.  He's also starting to weight bear so the worry decreases if he can start to stand/walk.  And so far he sees no evidence of my bone disorder in DS1, he says the lump on his rib is probably just a cartilaginous lump. 

However, He feels DS2 is pretty severely hypertonic, everyone else has just said he's mildly stiff.  He says his middle fingers are formed fine, but his hands are so stiff that they're contractured.  Which means we now get to call EI and have an eval for him done too.

We then drove up to a different hospital and had DS2's blood drawn to check for DS1's mutation.  (he has a 50/50 chance of having it and with the hypertonia they're pretty worried).

So now in about 4 weeks we should find out definitively if DS2 is affected also. 

 

To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew

Re: Good and bad news

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    finsupfinsup member
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    Yay re: DS1's hips!

    I'm sorry you are in the waiting game re: lab work, that is so stressful! At least worst case scenario you have learned a lot with DS1 and already set up a good medical team for him so if DS2 needs the same type of support things should go smoother this time. 

    Thinking of you and your family. Vent here anytime, postpartum hornones + life's challengs can certainly suck! Hugs! 

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    That's great that DS1 is weight bearing!

    Im sorry that you have concerns for DS2. I hope the waiting isn't too hard on you. Big hugs to your family. 

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    Just here to offer Hugs as well. Left HugRight Hug
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