We continue to have therapy every week and will be adding a speech therapy soon, he is making little gains but still is not rolling over or grasping for things. We also have not much improvement with eating solids... he seems to have an aversion to anything but his bottle... I believe due to the medicine we were giving to him by mouth (without mixing).
Things seem to be getting harder as time goes on and he isn't progressing developmentally as I had hoped he would once the seizures stopped. We had a pretty big hit to our reality, we had him seen by the neuro development team at ohsu after xmas and got a letter re-caping the appointment and where they viewed him developmentally. They put his motor skills at around 2 1/2 months old and his social skills at 4 1/2 months old... although i believe this to be a little off just because he wasn't in the greatest mood and didn't showcase what he is really doing on a daily basis. They also listed all the things wrong with him and for some reason this hit me the hardest, Cerebral Palsy, mental retardation to just name a few... This has been the hardest for me to process. I guess I hoped that he would be maybe physically behind but that mentally he would catch up. This I wont lie put me into quite a dark place and I have struggled to snap out of it.
On a better note, we have continued to maintain a great seizure control and have only had a handful of them since November, and it was due to his med levels being low. We just saw the neuro today and will start to wean him off of one of his seizure meds. This scares me to death but they say that the drug can be contributing to slowness in his development because of its sedating effects. So I pray that it goes well and that we start to see some progress in his development.
In the meantime Aiden is sporting a new helmet to help correct his flat spot on his head and his torticolis (tightening in his neck muscle) I was so excited to get his helmet hoping that it would help with his range of motion and mobility. He spent the first 4 days doing nothing but wining and crying and would just lay there and not pick up his head at all... a very long 4 days! he is starting to adjust to the helmet and we are starting to see some improvement with movement!! He also will be sporting glasses in the next couple weeks, hes gonna look even more like daddy (if thats possible!) so im hoping with all the new changes coming we will see him start to develop even more.
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