Crap week

[luvboston]

Ds has had a horrible few days his balance is way off and he's been hitting his head and falling more than usual.

It makes me sick to my stomach to see him sliding downhill.

And I not a doctor but had to make the decision to take him off Gabepentin.

I feel utter despair and we aren't even at the brain surgery and hospital stay yet.
And every time we go to a playground or museum I'm panic stricken he's going to get hurt even with the helmet. This weekend he got hit in the head by an oven door on a play stove.

I'm not a nervous person and this feeling is making me nuts.

Any thoughts are welcome. Please tell me this gets better with time.

[Deleted]

I don't know your back story or kids age. I will say DS was a very clumsy child and never suffered anything long lasting from it. He fell on his forehead almost every single day. While his balance is still on the low side he is much better now.

I know you have probably talked to all your doctors but maybe you can talk with them again and they will have something to help your concerns.

Also if you have a brain surgery coming up that is very very stressful and your feelings are normal. DS had heart surgery and I was a wreck for several months. He did great. We were traumatized not going to lie, but it's a year later and we are all doing well.

[luvboston]

@clarypax this is his second brain surgery in 5 months, he had bilateral arm paralysis and has an unstable cerebellum so him hitting his head is a huge deal because he has migraines etc and one knock can send us to the er.

[Deleted]

I knew there was more to it then I remembered. Will the brain surgeries fix that concern of hitting his head or are they fixing something else? I can totally see why you would be anxious. I know you are doing your best. I would be completely nervous and anxious too. Hang in there. And perhaps with time and medical intervention it will get better. Hugs

[chickypoo2468]

No advice, but hugs

[mrsbuttinski]

luvboston ,

Is there some reason you chose to post this on the Physical Needs Board rather than the more general Special Needs Board?

I was under the impression that this was a space for parents of kids with birth defects without issues like delays, (things like clubfeet that are relatively correctable), who didn't feel their concerns were quite "special needs" in nature. 

[luvboston]

mrsbuttinski my kid does have a congenital defect and it is fixable we hope. What does it matter to you where I post? Also no one unless they have a kid with a physical disability could understand or assist me in helping my son.

[mrsbuttinski]

Aug 12, 2016 15:21:51 GMT -5 luvboston said:

mrsbuttinski my kid does have a congenital defect and it is fixable we hope. What does it matter to you where I post? Also no one unless they have a kid with a physical disability could understand or assist me in helping my son.

I just wanted to know if you were unhappy or felt unwelcome at the special needs board. 

I wish you and your son the best.