Saturday, August 10, 2013

Five Weeks Seizure Free!

We are coming up on a new record!! Post op with his first surgery he went six weeks seizure free so we are almost there. It has been a very nice break for all of us in this household! We did go in a week ago for some concerns regarding hydrocephalus (extra fluid on his brain). They did a haste MRI which is done just as the name says...hastily.  He was swaddled and the MRI took a quick two minutes tops. The results came back with him having extra fluid but not enough to cause concern right now. We go in again here soon for another haste MRI to check on the fluid.  Most importantly what we discovered from that trip from Dr.Oxford (an AMAZING neurosurgery resident) that we were totally informed incorrectly about PJ's EEG. It was, in fact, abnormal but only from the all the empty areas which should be abnormal. He said in the thirty minute read there wasn't anything that seemed seizure related!! Big, HUGE, relief!! So for now, he is good to go! :-D

He also gets his orthotic this coming week to help his left foot. He is a little tight still on that side and is turning his foot in again until it has been worked out...then it straightens out but then the muscles are exhausted and he can't clear his toes from the ground with every step so he is accident prone right now. He is very very smart though and has already learned to compensate for his left "apraxic" really looks to be causing him minimal difficulties, from what we see anyway.

In the speech world PJ has made improvements. He is making tons more sounds. He has "words" but not all are exactly correct words for things.  He can make most single sounds (a,b,d,e,h,I,m,n,o,p,s,t,w, and y) he struggles with a couple of them but can do them. Putting two sounds together is very very tough for him right now. He has a handful of words that are more complex but getting him to say new things is like pulling teeth. We have started using Talk Tablet and it seems to help...he repeats whatever button he pushes (as best as he can) and with every repetition he does sound a bit better.  It has also helped us test his cognition by asking him to find a certain App we could have gotten (Thanks Mom and Dad!!!).

Overall, we couldn't have asked for a better outcome for PJ with everything he has been through. Next hurdle is keeping an eye on his fluid and seeing how his body responds to it...hoping it will start regulating it.

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