Thursday, February 20, 2014

Into the Hundreds!!!

So we are well over 100 days seizure free now (123 or so days) which BY FAR stumps all of our previous records. We have had a few hiccups along the way. We have been hospitalized once to find that his EEG isn't exactly clean BUT we have seen no signs of the extreme debilitating seizures he had been experiencing. Does this mean he is in the clear for no future surgeries? No, but for now we are going to soak up this valuable time and enjoy it! He is now down to only TWO medications! Yes, that's right two! He takes clonazepam and trileptil two times a day and melatonin at night to help him sleep. Keppra and Topomax seemed to really be hurting him with speech and cognition since without them he has made strides...granted that could also just be lack of constant beating seizures also! Amazing, we go from once taking 32 pills a day and being on the keto diet, to now only being on two meds only twice a day! 

Right now our biggest battle is dealing with PJ's motor/movement problems. An area where Parkinson's disease is found has been damaged/removed causing some "Parkinson's like" symptoms. They are not extremely drastic but they are definitely there. This is causing his speech A LOT of problems. We continue to work with him but the progress is very slow. He is extremely determined and very eager to receive help and to try which makes me so very proud but can be very heart wrenching to watch. He is very outgoing, which is wonderful and totally new for him, but brings on another obstical --communication beyond the word "Hi". He will initiate a conversation and then quickly will get lost and really knows no other understandable word after that but "yeah".  As far as the speech world goes, We are also tackling global apraxia, dysarthria, auditory processing, and possible auditory neuropathy. All of which can make speech very of right now we are trying to tackle the apraxia portion of it all. Progress is slowwww and steady but as long as he continues trying and pushing forward then we will keep pushing with him.

Cognitively there is no comparing the PJ now from the PJ back in October. He is sharp as a tack!! He knows exactly who his brother and sister is. He knows a couple of shapes, he is TRYING to understand colors, he knows how to count to five (not really understandable past three BUT he gets the concept), he understands turn taking during games, he knows around six or seven animal sounds...he also knows what is his favorite shows; Doc MCstuffins, Mickey Mouse, Sophia, and Jake and the Neverland Pirates. He even tries to say their names when the shows come on and tries very hard to sing the songs. I am utterly amazed by how smart he is even with missing over two years, almost three years actually, of development. 

As far as PT goes we do a TON of work at home. Stretching, obstacle courses, running, jumping, dancing, ect...ANYTHING to get that left side stronger and keeping the muscles loose. He uses a night splint every night but during the day we are now not using his orthotic hardly at all. He can jump four times in a row now and is back to running pretty well. He still can not ride a bike yet...he doesn't quite have the strength in his hip to complete the peddle motion. He tires out very quickly also...if he is walking for long distances ongoing without stopping he will start tripping and ask for help. Overall though he is doing remarkable in the physical aspect of it all. We are very lucky he has his brother and sister....those two make him move and encourage him to keep up. 

On the OT side of things he still has a considerable amount of left sided neglect. He can use that side with less accuracy but it is still functional...granted it has taken a lot of work for us to get him to do as well as he has. Constant nagging (us saying both hands or where is lefty?), partial constraint therapy while playing at home, stick on tattoos on that side of his body, massage, among other things happens basically daily at our house...even his brother and sister get in on the nagging haha! We did receive a spio suite which does seem to help with his body awareness on that side. He has compinsated well in terms of vision...there are still obvious deficits but he doesn't have near as many bumps as he once did. 

He throws fits like any other typical three year old now. Not fun but I'm glad to have something normal and totally expected and age appropriate out of him. It's so hard not to laugh at him sometimes when he gets opinionated and headstrong about doing something. We try really hard to keep the rules the same for all of them as far as punishments go but I still really struggle with it..I'm getting better about it now but I still find it hard sometimes to punish him when I am just so happy he is able to do the things he is doing. 

The hardest thing for us to deal with right now is PJ's new found love for sports. This kid will watch a whole football or basketball game with full on amazement and enthusiasm. Not only will he watch it but he will run to his room, get a ball (whichever sport is on is the ball he will get) and start copying the guys on the TV. My hope is that we will continue to work really hard with him and one day he will get to play. I don't doubt at all that with as much determination as this kid has that one day he will find a way to do whatever he wants. I swear by looking at him you would never ever know the trials this little guy has been through. I have some pictures I have taken over the last couple of months! Sister, as you can tell, doesn't get in the pictures much HaHa! She is just as stubborn as PJ! :) 


  1. My heart is with you.
    My son also suffers from cortical dysplasia, and your blog means relief to me.
    Love from Spain.

  2. My son was dx with cortical dysplasia. Its feels good that Im not alone. Im in San Diego Ca