Monday, July 1, 2013

Round Three...

Seizures have increased to up to 20 visible episodes a day. Most of them occurring at night and during nap time....Leaving PJ, daddy, and I to be horribly sleep deprived. We have been giving midazolam almost daily and sometime twice a day with little relief. They upped his Topamax drastically to try and slow things down which has worked a little allowing us to give him a break from his midazolam.  Paul's neurosurgeon wanted to see him ASAP last week to discuss another surgery so we met up the day after I called letting them know the severity of things (so thankful they moved so quickly). He let us know upfront that this may take four or five surgeries (depending on whether or not seizures return again) to get the dysplasia as it "acts up" because  he is really wanting to try and spare as much of that right side as he can. The only lobe that will be left alone this time is his occipital lobe (vision) and maybe a part of the periatal lobe depending on whether or not it reads clean once they are in there.  The temporal, part of the periatal, and an area really deep in the brain called the insula lobe has to be remove. The insula lobe puts him in a very high risk for stroke which will essentially cause the same damage to Paul's physical abilities as a full hemispherectomy would cause but there is still that chance that he won't stroke and he will have fewer issues physically and that is what his surgeon is aiming for. We aren't afraid of any of this though because we know he is in very good hands and these seizures must be stopped so he can cognitively and verbally progress. Every day is one day closer to helping PJ. Our other two blessings are taking everything so well. They have sacrificed so very much during all this...makes me happy that they are all so young I think they don't know any different right now and don't have a clue that this isn't normal.

PJ's third surgery is scheduled for this Friday the 5th. Praying hard that my baby comes out of surgery as well as he has in the past. My only fear, with either living with seizures or surgery, is losing my baby. I hope and pray this gives my little PJ some relief from all these seizures.

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