Thursday, March 28, 2013

One Year Post Op and his Worst Day Since Surgery

Today marks the anniversary of PJ's life saving surgery!!! We thank God daily for blessing us with this amazing little boy!!! We also are thankful to the Mayo hospital for doing all they could to find answers and for taking such remarkable care of him through his long stay there. He is our miracle child. :).

Yesterday, however, was our worst day since surgery. PJ went through a five and a half hour period of cluster seizures. He got some breaks but just couldn't completely pull himself together. Finally the hospital said if we see one more would need to administer his emergency meds and call 911. We were pretty upset at the thought of being hospitalized and giving him medicine that would take two days to ware off (we despise the emergency drugs it makes it impossible to see if he is no longer seizing...but know they are also necessary to help his muscles from being damaged).  Thankfully though he snapped out of it and like magic was back to normal. It drives us crazy...there is no trigger, no method to the mayhem, no reasons what so ever for his episodes. That's what makes things tough. Even tougher and more scary to accept is that no medicine can stop his seizures it just truly does what it wants for however long it wants. Soon I hope he will be free of these seizures...five more days till we find out if it can be done!!

Tuesday, March 26, 2013

Neuropsychology Appointment

Well today was PJ's appointment with a neuropsychologist.  They like to get a child's developmental skill level before a surgery and compare after.  It went really well, it was just sad to see his weak spots. Hopefully though once we stop these seizures he will be able to thrive like any other child.  Next week is his PET scan and I am worried.  I want them to be able to see it and I don't want it to be a large area....preferably teeny tiny and most importantly operable.  I know we probably won't get all that we want though but we can still hope! Paul has had such a slow month with seizures though...which is odd... until yesterday. He had a couple (possibly more between them) within three hours so he was done for that whole morning.  We love this little boy to pieces, it hurts to see him go through all this! Hoping to get things fixed soon....we would be on cloud nine if we never saw our son have a seizure again..

Wednesday, March 13, 2013

Breaking Records!

Right now I'm going through this naive stage that maybe the dysplasia just disappeared..or perhaps his brain connections have weaved their way around it completely and he will be fine.  He is nearing his record of no visible seizures. Well I say nearing....but it is as close as he has gotten to it. Seven days! So proud! There has been so much focus and developmental improvements this week that I just want to think he is "normal" now! I do know...deep down....that this IS the calm before the storm for him.  What is scary is the longer he goes without a physical one the worse they will be when his bad week gets here.  I thoroughly enjoy seizure free times but when it gets to be this long I have to snap out of my dream world and be on my toes.  We never go anywhere without his midazolam and try not to let his disorder pull the rug out from under us. It must be so frustrating for him...he takes three steps forward and two steps back during good times like this. He learns so much just to have to start over again after his seizures get him.


Well...maybe I jinxed things! P.J had a seizure while his daddy was rocking him to sleep.  He went a good while without a hard "physical" one. Now to conquer this bad week or so and hope for a good break again!

Friday, March 8, 2013

Most Recent MRI

Picture of Paul before the MRI :)
So, this would be P.J's eighth MRI in the Past year.  Unfortunately, even with the best MRI it is near impossible to tell what is damaged brain and what isn't...but we will see what this MRI says, we should know in a few days.  This is how we have understood it; Since his brain is still developing at his age it is really hard to see the dysplasia--as he ages it will become more and more visible---Problem is the longer we wait to stop the problem areas the more damage could be done and the ability to recover from a brain surgery is more difficult.  Plus at this point his brain is a ticking time bomb....we don't know how bad this could truly get or when it could happen.  Anyway, we are waiting on his PET scan here in a couple of weeks to get a better idea of what is going on inside the cute little head of his :) 

After the MRI...not the happiest coming out of sedation!

Wednesday, March 6, 2013

First "Real" Word!!

So P.J has made me come so close to tears today!! His speech therapist came by the house today for his weekly visit (she is so awesome, and P.J absolutely loves her) and P.J did something unexpected...and AMAZING!

Speech has been a constant struggle for him and he really just babbles a lot.  He does say Mom, Momma, Up, Uh-oh, Uh-Uh (for no), and Yeah.   Recently, this past week, he has started saying Hi, Bye-Bye, and most recently Bubbles and Mine.  The problem with P.J is his words are not super clear and most times he doesn't quite get the words out right.  Like he will say Ba for Bubbles or just resort back to babbling. 

At this point he refuses sign language so that, at the moment, is out of the question for him although we still try to incorporate it into what we are telling him sometimes.

Anyway, onto the great news.....P.J said "Barbie"!!!! Not just babbled it or said it broken up---he straight out said "Barbie".  :)   It wasn't totally perfect but he did it and I about passed out from shock! He covered up his sisters barbie picture and I said "Bye bye" and he uncovered her and I said "Boo Barbie" and he recovered her and uncovered her again and said "Barbie"!! Hopefully he will hold onto this word for a while, we will see when he starts having more of the terrible "S's" whether or not he was able to keep it!  We are so proud of our little man! Fingers crossed the word sticks! :)

Monday, March 4, 2013

More and More Tests!

P.J's two night stay at the Children's Hospital.  Of course big Brother and Sister were there for support for a bit Arietta said "Oh, Pauly are you okay???! Were you brave!!??"   :)   I will say though--this little boy was thrilled to have a bag of snacks.  Obviously he couldn't keep his hands out of the bag! 

We thought for sure there would be a seizure since we usually see at least one a day.  This boy just wouldn't do it.  He made a liar out of us for quite a while!

Daddy visited the hospital on the second day and I literally RAN to Starbucks and loaded on caffeine...something about hospitals I just HAVE to have my caffeine!! On the last morning there P.J decided to have a seizure and I was thrilled (only because I knew we were getting the information that we needed to help him).  I wasn't thrilled about the timing...we were sleeping and I heard him grunting and had to hurdle off the hospital bed...I'm sure the EEG tech had a good laugh at the video!We were warned that we may need to stay to at least record three seizures but the doctor came in and told us he got everything he needed from the one he had.  His right side (not quite sure where yet or how big the area is) is seizing sub clinically and when we see the physical seizures it is the seizure spreading to the left side of his brain...which is not a good thing.  We have an MRI scheduled and will be going in for a PET scan in a couple of weeks also.  We have to save the functional spots of our sons brain and since the medication isn't working our other option is another brain resection if operable.  We are hoping that it is a tiny little spot and totally easy to get to and also that if it is operable it will be the last time he has to go under the knife.  Good news though---P.J's medication has been lowered.  He is still on the Topamax, Trileptil, Keppra, and Clonezapam BUT the Dilantin is gone and instead of three times a day he takes his medicine two times a day now! Soooo much better!