Karena - posted on 02/21/2009 ( 26 moms have responded )
My son was born prematurly at 26 weeks weighing 2lb 2oz. We spent 4 months in the hospital, 2 months into our stay at the NICU we were told he had suffered a bleed in his brain - and we would not know the extent of the damage until he does not reach certain developmental stages. At our most recent neo-natal follow up visit they diagnosed him as having cerebral palsy. Although heartbraking to hear the words we can all move forward with treatment(s) now.
Our biggest concern right now is his increased muscle tone - he can become so stiff and we cannot move his legs or arms - he comes out of just as fast as he goes into these states, but it looks sooo painful for him.
A big obstacle of this is getting around - he HATES his stroller, his carseat and every one of his 5 or so slings/baby carriers we have bought - he LOVES to be carried by mom or dad though - he almost weighs 20 lbs so it's beginning to get difficult. I am wondering if anyone else has had this problem with their babies? We have recently found a booster/highchair that he will sit in so we can feed him, which was and is a lifesafer as it was getting to difficult to feed him solids.
Would love to connect with other parents out there who are going through the same thing.
We live in a small community so there are not many support groups etc here - althought we are working with an excellent child development centre and we will beginning to frequently visit our Childrens Hospital a short trip away.
Our pediatrian also mentioned starting to use muscle relaxers (valium) we are holding off on that for right now - anyone have any input on that.
thanks for listening....