Monday, July 29, 2013

EEG Spot Check Results

We got the results from PJ's spot check EEG and in the 30 ish minutes of recording he had no seizures that they could see. It unfortunately still showed abnormal on the right side.  It also showed signs of some swelling which doesn't come as such a shock to us with the surgery being done about three weeks ago.  We were told that it had improved...I had to chuckle with that being said as nearly all that side was removed so it better had improved! We have an MRI and an appointment with his neurosurgeon in a month and in the meantime we will watch and wait for seizures since with it reading abnormal we are thinking that it is most likely due to more dysplastic brain---at least until we are told otherwise anyway. I was really hoping to have them begin lowering meds but with his EEG not being clean I am not thinking that they will...who knows what will be said next month to try and be a little optimistic!! :)

Friday, July 19, 2013

Two Week Post Surgery Neurosurgery Check Up

PJ had his two week check up today and his wound looks great, no concerns there. There are some concerns however with his twitches happening throughout the night more frequently, predominately on the left side from facial twitches all the way down to his toes. His right leg is now also showing random bouts of extra tone causing him to trip which is odd.  He is getting an AFO soon, for now as he heals, for his left leg and we were told that it looks as though,now, he may need one on both legs as his usage of both of his ankles seem pretty unpredictable (left more then right). He is being scheduled for an EEG to see if his motor strip is acting up any and perhaps causing some of these issues (twitching and right ankle tone).  He is also complaining of his head hurting towards the back and is unconsolable at times and these episodes stop abruptly.  They are not too concerned about this right now though as it could be a result of the recent surgery and could happen up to a month after surgery.  Even still though if his occipital (visual) lobe was/is acting up an EEG would (hopefully) pick up the abnormal waves. We are hoping his reading comes back clean but also know that if it doesn't its okay because we know there are other options to get PJ to lead a more normal life.  Blah, tests. They are so great for getting answers but such a pain for a two year old.

PJ and his "sissy" holding hands while he sleeps :)

Monday, July 8, 2013

Home 40 Hours After Surgery

The surgeon made his rounds yesterday morning and was so impressed by PJ's accomplishments that he released us home. It is so shocking the small amount of deficit he has physically compared to the large amount of improvements we already notice in other, like last time, we know to keep a close eye on things since he showed tons of signs last time that he was still seizing.  For having nearly all his right side removed he is just blowing us away!

Physically what we have noticed: He walks with a bit of a lean to the left and has still been consistently dragging his toes on his left foot. We are working hard at getting him to use his left hand but at this point he is doing a great job of forgetting about it being there. When he uses it he is able to pinch at things but it seems considerably weaker then his right hand. But we are only two day out of surgery so we know things could get a little better quickly as he heals.

Positive things we have seen: PJ is not flushing so far and his twitching during his sleep is very minimal. He has already started saying the few words he spoke before surgery and his response time has been very quick when answering "uh huh" (or nodding) or "uh uh" (or shaking his head). He is also saying thank you (more humming it then pronouncing it, but he does it consistently when somebody does something for him or we tell him to say thank you).  He has started more "baby babbles" which is a good sign of him trying to communicate more. He is also back to using two words together. We are hoping since he is doing this so soon after surgery that soon or at least eventually he might start spitting out some more words!

It is so amazing the amount of trauma a child can go through and still pull through without skipping a beat.

 This kid is our miracle.

Saturday, July 6, 2013

The Day After

PJ is doing remarkably well. His surgeon came by to check on him and told us that by looking at the post op scans it doesn't look like PJ should be using his arm and leg yet he was moving around all four limbs.  Today Paul took things even further and WALKED! He is dragging his toes pretty bad but is still walking unassisted. His grip has improved a bit but is still weak with his left hand. His surgeon is not worried about the seizure PJ had since the motor strip left had quite a bit of trauma during the surgery, he seemed to kind of expect it. This does not mean we stop being on our toes....we know now that only time will tell us if this surgery did the trick or not. On another great note, he hasn't thrown up at all, which makes us happy and he is eating and drinking well. Now we wait for him to poo. We are so amazed at how well he is doing :)

Surgery Three Completed

PJ came out of surgery today like a trooper! He heard my voice and said "momma up" reaching towards my voice (his eyes were already swollen shut). They wrapped his head this time around which is kinda nice also. Sadly PJ had a seizure about two-three hours after surgery. It showed all the signs of PJ's old seizures minus the staring spell before it. The areas he has remaining on that side is his motor area and his occipital lobe.  He did get as close as he could though to his motor as he could without totally wiping him out. Unfortunately we knew that there was a decently high possibility of  more surgeries but will wait in high hopes of seeing nothing more---but also totally accepting the possibility of needing another.  we were told during this surgery once they got through to the insula(r) lobe that it appeared to be the most obviously malformed. It was all scar tissue from "burning itself out"-- it was also constantly firing off deep in there.  They also let us know finding dysplasia there like they did was very rare. Good news is PJ didn't stroke from what they could see on his scan after surgery but the vessels supplying blood to the motor area were, from how I understood it, pulled away from abnormal tissue so we are hoping they don't start "spazzing out" on him.  The deficit on his left side currently is more pronounced but we anticipate it getting a little better before we see his new baseline since healing will take a bit of time. Will be updating as PJ comes around more, thank you to all our friends and family for the support and prayers!

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.