Monday, November 25, 2013

Month and a Half Post Fourth Surgery!

Life has been really nice these past couple of months without seizures. PJ is making huge strides cognitively, it's amazing! His memory was so bad prior to this surgery and now he knows what a cat, dog, lion, and pig say. All correctly...not only is that an awesome accomplishment in general for him buuut it's super awesome for a kiddo with global apraxia! His receptive language has sky rocketed as well, he is right in the middle of the normal range for his age....again amazing. His speech is still not there yet but we are working through that. He can make sounds and say a few words but those words have been programmed in to be used all the time. We are hopeful that now knowing he has apraxia and dysarthria we will be able to get him up to speed by approaching him correctly in ways that will help him develope speech. Right now prompt is a huge part of speech therapy.  He is off of his Topomax now, we are very relieved to be down to three seizure meds....THREE never in two years has he been down to only three. Without need for emergency drugs,Very happy parents over here!! We are having a hearing test scheduled here soon to make sure his hearing is good, just in case. Hopefully it's great and that'll be one less hill to climb for PJ. Although there is a concern that he may have some high frequency hearing loss. We will worry about that when and if there is a need too after his hearing test.

His Hemiplegia has caused him to be, what I like to describe, jellyfish like. He is very sloppy in his movements but we are working on getting that a bit better. His leg, arm, and hand are doing as good as they can. His leg is in worse shape then anything else. He can get around but trips a lot without his brace on. He actually likes wearing his brace...I think it is because he knows it helps him quite a bit. He still walks "sloppy" with it on because of the weakness in his knee and his hip. We are just thankful he is moving on his own :).   His arm gets postured sometimes, bends it at his elbow and cradles it some, but he still uses it when he has to....sometimes without being prompted. His hand is working marvelously. I don't see much of an issue with it although we haven't "compared" it to the other too much and haven't "pushed" it to do tedious tasks. His lack of support though is thought to be contributing to his apraxia so we have to keep trying to strengthen him up! There are plans on getting him into a physiatrist to see if medication may help reduce the tone in his shoulder and arm.

We aren't sure what PJ sees at this point. It's obvious he has left sided peripheral loss in his eyes but to what degree is unknown. He has to turn excessively to really see what's going on towards the left causing his posture to get crazy! Most the time, at home, I can't tell there is even vision loss.  Therapists though have found it to be causing him some subtle problems. We will be seeing a developmental pediatric ophthalmologist soon though...hopefully!

Emotionally PJ is becoming a bit of a wreck and very unpredictable. He can be set off so easily and sometimes there seems to be no reason for it at all. He will throw himself down, kick, scream, hit, and is completely unconsolable. He wants me to hold him but doesn't at the same time. It can be pretty chaotic!  We have found that he has SPD (sensory processing disorder) which may be a huge cause to the fits. What is hard is he goes from being an extreme sensory seeker to shutting down and needing very very little stimulation. It varies from day to day. On top of that I'm sure it is extremely frustrating having things to say and not knowing how to say it.

Trick or treating went soooo well for him this year. Finally the kiddo was able to enjoy it and really seemed to finally understand what was going on. I loved seeing how happy he was!! I'm even more happy to see him this thanksgiving and Christmas eating all that good food without limitations from that awful ketogenic diet!! :)

Hopefully there will be no more seizures and no more surgeries for him. He really seems to be making such great improvements!  Now to find time to add some pictures in here!! 

Wednesday, October 16, 2013

Surgery Four Complete..With Some Minor Tweaking

We have had so much stuff go in every different direction it's been chaos! PJ had his fourth surgery last Thursday. It was delayed due to them squeezing in an MRI to see if they could visibly see the malformation. In the areas that were left there was deeper tissue still left behind that his surgeon wanted to try and see if, hopefully, it would stop the seizures without having to resort to the full hemi. We were very very leery of this as a fifth surgery just made our stomachs turn BUT we do truly trust his group of doctors and agreed it would be worth a shot. The surgery went very well and for once no blood transfusion was needed. He has more deficits now, which we expected and honestly they are not too bad at all in the grand scheme of things. PJ has some issues with his left arm and hand. He has a little tone throughout it and has caused some motor planning issues along with some left side neglect...all of which we should see some improvement on. He has some left side peripheral vision loss and possibly some visual neglect.  He has already began compinsating for the visual changes and doesn't seem to mind too much. His left foot has more tone in it and we are looking at possibly getting a night time splint and a better fitted brace for extra support. Another change is PJ has started the thickened liquids diet...he was having a lot of problems tolerating regular drinks and fought us every time we offered it to him. Well come to find out he needed thinkened liquids, now he is a much happier boy. Oh the drool this boy can put out now with the weakness on his left side being more is rediculous and he is hilarious with his sneaky ways of trying to wipe it (usually on my clothes when he conveniently buries his head with a hug). Good news, so far, no seizures....and trust me, I watch for them! More good news, PJ is officially a make a wish kid they accepted him about a month ago and we met his sponsors...who were so very sweet!! Overall I think he is a very blessed kiddo and we are even more blessed to get to say we are the parents of this strong willed little guy! Hopefully more good news posts to come. :-) 

Saturday, August 31, 2013

Round Four??

I feel like so much has happened since our previous blog entry that I don't feel like it is possible to even put it all into words. We had an overnight EEG that turned into a two night EEG. The results were not easy to read for his doctor with healing and things going on but PJ is having subclinical seizures as well as his other episodes. It is all right sided and isn't spreading to the left which is really good to know. Unfortunately the area that is showing as dysplastic is an area that will impair both his vision and his motor if removed. We are still weaning off of Topomax currently and maybe keppra but it is too dangerous, at this point, to take his clonazepam away.  He has been on it for nearly two years twice a day and taking it away could trigger seizures not related to his condition just purely from the withdraw. His trileptil is slowly on the rise though in hopes, that eventually, it will be his only medication. We talked to his neurosurgeon last week and he feels that the next step is a hemispherectomy for PJ. Our latest date for surgery is October 3 but he is amazing and said that if he can he will do it sooner. I am going through a lot of conflicting emotions regarding this decision, although I know it needs to be done.  I always have said "I'm not worried, I just want him seizure free." Deep down though I feel horribly sickened that we will have a new set of difficulties for PJ to overcome and suddenly all of this has become very very real to me. I am kind of feeling it is a lose lose situation but when thinking of what I would want I would pick better cognition and communication with no or drastically reduced seizures and impaired mobility over good physical mobility with multiple seizures and very impaired cognition and communication. Making the decision for my child though is nothing short of heartbreaking. Of course I am a worrier so I also can't help but worry about the left hemisphere which has always been perfect on tests but that "what if.." Always creeps up on me and gets me wondering if that other side is as good as the tests have shown. Ugh. My husband is so relaxed and together and keeps reminding me that just because PJ has a good day doesn't mean it's gone, and he is right. We were told numerous times that once this type of dysplasia becomes active it doesn't stop...we have always found this to be true even on good days he was having subclinicals and even more unnerving seizures not even readable through the EEGs. It's just tough and has proved to not get any easier on any of us. All we can hope and pray for is a successful surgery with no complications, that he does become seizure free, and that he has a speedy recovery.

Monday, August 19, 2013

Pushing Forward

After speaking with Paul's doctor we are beginning to wean him off of all but, hopefully, one medication. We have upped his trileptil and significantly lowered his Topomax all the others are staying the same for now. We did find out he is having up to 8 seizures a day. All the extreme fits I have seen of him crying in pain that I thought could be pressure is in fact seizures from the motor/sensory area. They are wanting to do an overnight EEG but want to try to get him on one medication first but if things get really out of control we will go in sooner. Along with his fits from his seizures triggering pain he is having tonic clonic appearing seizures every other day (except for this weekend he had one every day). Not sure what the next step is but at this point the medication has made absolutely zero difference. What is most frustrating is knowing there is something causing this yet we still try to medicate the issue...I know we have to try but we know it isn't the answer as it has never previously worked so why in the world would it now?

We also put in to see if PJ could get a wish through the Make a Wish Foundation. All his life at this point has been seizures, tests, medication, surgeries, therapies, and doctors....I would really love to have him have something done for him that is full of fun and far from all the things he has become accustomed to. He needs some fun times with his siblings!

Saturday, August 10, 2013

Spoke Too Soon...

PJ is back to 0 with his awesome record. Had a seizure during nap time. :(

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.

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.

Sunday, June 16, 2013

And We Start Again..

It has been a while since I have updated...We had an overnight EEG last week that turned into a two night EEG. Sadly PJ is still seizing from the right side. He had multiple seizures the first night we were recording with one physical episode. They asked us to stay to try and get more information and information they received...PJ had his worst night, with seizures mimicking the ones he use to have before his first surgery.  It was long and stimulation set him into a hard physical seizure. Needless to say, I was a petrified mess. We were told that his seizures are remaining on the right side and, at this point, not spreading to the left. His flushing episodes are seizures and his extreme fits could be seizures or repercussions of a seizures. Right now the big bulk of his seizures are happening at bed time and nap time but abnormal waves remain steady from everywhere remaining except the occipital lobe (or at least from what the EEG reads anyway). Right now there is a possibility that he is seizing more deeply in the remaining right side making it also undetectable on regular EEG like before.  Right now we are at a place where a hemispherectomy is Paul's best shot at living a normal seizure free life....We are very aware that chipping away at that side doesn't seem to be doing the trick and we don't want to put him through more surgeries then necessary and our gut is saying this is PJ's cure. God has a big plan for this sweet little boy. He has taught us so much already and I pray that PJ and all of us can look back at these couple years and smile knowing how far we have come. We should be hearing back from the hospital this week for further appointments and are really hoping that things roll as quickly as they did last time. We are also, possibly, going to be taking away some more medications sometime soon...but we will see how that all turns out.  It just breaks our hearts seeing PJ suffer.

Friday, May 31, 2013

Neurosurgery Two Week Check Up

Yesterday was a flood gate of emotions....pretty common for this house hold!  We met with neurosurgery and they were so very impressed with PJ and how well he is doing developmentally...he is really thriving right now which I can't get enough of seeing.  I actually am feeling a little bad because my other two young ones are lacking a little of my attention during the day.  Still really trying to work out some sort of balance.

They also informed us that pathology came back as cortical dysplasia  ll b, which was a relief because we were told that it was likely more then just one type in there.

  I did bring up my concern with his face starting to flush again and him twitching again (the twitching has slowed down a lot but is still happening) during nap and bed time like he did before this surgery.  I brought up that I knew the brain was healing so I was hoping it may have something to do with it.  I was quickly told that those symptoms weren't healing related but were unfortunately signs of seizures.  Deep down I knew that the flushing wasn't good. I even watched him do it a couple of times right after surgery....use to though, most of the time, (before the surgery) this flushing and twitching would lead to a full on tonic clonic I thought in the hospital he was going fall into a big episode but once he didn't and the redness faded I had hope it was nothing...I was in a bit of denial with it all..I think, even though I didn't admit it openly, I had loads of hope that this would be it even though I repeatedly said "I'm not very hopeful".

Now we are waiting for him to heal some to see about a third surgery. They told us they typically wait a bit before they go in again--not things we wanted to have brought up after we all successfully survived this second round. This dysplasia will only get worse again though if it isn't all removed, so we got to do what we have to, to give this little guy the best life we can. At this point it is being seizure free and try and reduce the ample amounts of zombifying seizure medications he is on. As of right now we begin waiting again---waiting for harsher seizures, waiting for doctors phone calls, waiting for appointments, and waiting to have our little boy be healthy, happy, and rid of cortical dysplasia. He will get through all this!

Tuesday, May 28, 2013

A Turn for the Best! :)

On the 22nd Paul woke up and surprised everyone. He decided, on his own, that he was ready to walk, nearly run, play, and begin communicating. He even said two words together consecutively! Both totally clear! Amazing! We did move to the rehab unit to ensure that things were going as well as they seemed and he blew them away.

He does have problems with his left arm and remembering it is still there and will need an orthotic for his left ankle just for outings where he will be doing lots of walking to keep him from tripping.  Really though things were not expected to be this well.  Unfortunately, PJ did have a "possible" seizure at night in the hospital.  His eyes rolled back a few times and he began lip smacking then his jaw went tight, he took a deep breath, then went back to sleep.  We were told not to worry to much as it could be the brain healing and not anything related to his disorder....can't lie though, I am worried...petrified actually, but we will see.  I have a feeling though that if he has an abnormal EEG again that they will end up graphing him to make sure he is not constantly seizing again deeper in his brain....maybe not, actually I'll word it better HOPEFULLY not...I would prefer his EEG be nice and normal and us not even need to wait to find out what they would do!   They released us from the hospital Friday afternoon and we were able to bring all our babies home.  I snapped a picture before my oldest had his swim class...which he wasn't very happy about haha!

Since being home I have noticed him still flushing a deep red color during his sleep.  I am not too sure what is causing this and will be asking the docs to see what they think....I can't help but fear that the seizures are still at it in there.  He has, however, had a HUGE reduction in his twitching in his sleep and has had a big boost in his balance overall.  Even with his bad leg he seems to be way more coordinated now then before.  His cognition still waivers a bit.  In fact, he doesn't understand if we say more then three or four words to him.  It has to be straight to the point or he just goes "uhhhhhhhh" and then walks off...which could be a result of many things...he isn't at a very cooperative age as it is! Needless to say we will be giving PJ lots of TLC to try and see how we can try and get him to a comfortable level developmentally.

Sunday, May 19, 2013

Slower to Recover..

Ugh, we have got hospital fever...blah!! Yesterday PJ started having some huge milestones hit. He walked on his own, unassisted, for about 10 feet to grab the handle of the hospital door and pull it with his left hand--this just so happened to be the door that led outside to the patio. He has been spending lots and lots of outside time in hopes of perking him up a bit (so far not much of a change). He is saying his typical words again but more clearly and alternating from one word to another without pause maintaining clarity throughout. PJ has begun giggling again also which is amazing to hear! Today he finally stopped vomiting and was able to, once again, tolerate food. Now for slower to recover parts...PJ is so very lethargic and rests most the day. He does not do anything unless we make him. He literally lays in bed and doesn't move unless it is to reach for his dad or I. His heart rate has been low today and now they are having to watch that a little closer.  They are also waiting for him to "do the do". This kid refuses to poop. We're hoping tomorrow he will poop and have more energy...I hate seeing him like this. I worry too that a third resection may be pushing him to the limits if this dysplasia is still deeper in there "hiding out". This NEVER gets easier...I truly don't think it ever will either...I will always worry about this little guy. I don't know if this is because the lack of success with the first surgery but I feel like I can't hold much faith in the thought of my son remaining seizure free, I feel horrible thinking that way..

Friday, May 17, 2013

Post Surgery Update

So we were reunited with our little man earlier then expected yesterday around 6:30 in the evening. His surgeon let us know that they took more then they had planned for but were very pleased overall with the surgery. Once they had the electrodes on the brain during the surgery (the doctors called it ECoG which they do in order to distinguish exactly what is "bad" brain and what is "good" before they resect) they found that, once again, my baby boy was constantly being disrupted by seizures. He told us it was firing off so much that within five seconds of having them on they had enough information to remove and it would have been the same outcome if the would have decided to do the IEEG (the few days of Intercranial monitoring) so thank goodness he chose not to go that route. I will say though I am totally heartbroken that this has went on for as long as it has and that these seizures have been constantly wrecking havoc inside my little baby's brain since his birth. What was so difficult with that most of the seizures he was having were not physically seen by us but was developmentally destroying and holding PJ back. How he is with us today and how he continued to make tiny steps developmentally is nothing short of a miracle. Overall though he did very well in surgery and once he came out the nurse told me he said "owieee" and she asked if his head hurt and he quickly responded with "yeah" this brought me to tears....he has never responded quickly and correctly to questions and he did with her! He is slow to move his left leg but he is moving his left arm pretty well. It will take a little bit to see how he will be as far as weakness and function go. Oh, most importantly...and encouragingly, PJ had his first ever clean EEG reading (from the ECoG) after the "bad" brain was removed...AMAZING! :)   Now we set back enjoy time with our little boy we have never really met and pray that the dysplasia was all successfully removed. Thank you to all our friends and family for your unwavering support, love, and means so very much to us!! We will update as PJ wakes up...

Thursday, May 16, 2013

Here We Go Again

A quick update for now:  
Today is the day... Right now our baby boy is in the hands of his surgery team. He was so angry going under it broke my heart! We know this is the right thing but it still doesn't really make this process much easier. He went back a little later then expected so he won't be out until pretty late tonight....his poor surgeon will be putting in quite a few extra hours today I think. More updates to come on this looooonnng day. 

Thursday, May 9, 2013

Surgery Date...

We got the call! His second resection is being scheduled for next week on the 16th. Hoping that no sickness comes around this house! If he gets sick the surgery gets pushed back.

Wednesday, May 8, 2013

Meeting P.J's New Neurosurgeon

The last couple of days have been busy for us with Pauly. We had his Bailey test yesterday and today we got the results of his test and met his neurosurgeon.

P.J was not into the testing...AT fact he got extremely upset and frustrated towards the end. At first he was pretty mellow and compliant but eventually enough was enough for him. We found out today that he is more delayed then we thought. He is roughly between a 12-16 month old level (averaging out his scores). We truly don't see him being that far behind when he is at home....we know he isn't where he should be but we had no idea he would rank so far behind. That's okay though, things can only get better, right? :)

His neurosurgeon seemed to be a wonderful, intelligent, compassionate gentleman. We were relieved to see that Pauly also approved of him, P.J does not try to interact with people if he doesn't "click" with him and P.J was more then willing to reach for things he had and listen to him.  We were told that they were not going to bother with the IEEG this time (brain graphing) as he could obviously see the remainder of the right front lobe was an issue. We are looking at only a 50% chance of him being seizure free. If they return they will schedule him for brain graphing and remove further back and if need be will consider a hemispherectomy. At this point his surgeon does not want to remove too much in one surgery anyway. We are already treading on dangerous ground where the dysplasia is. There is a chance of a shunt being permanently placed since one of the areas being removed is near a fluid pocket. The surgery could be next week or the week after....we should be finding out tomorrow. We were told it will be a seven hour procedure and be about a four day hospital stay, maybe longer depending on how much of an impact the surgery takes on his motor functions. The appointment was really a lot to take in and I feel like I should have recorded it just in case I missed something. I got the just of it though and although my wording isn't near as "medically smart sounding" as he put it that was the basics of what I gathered from our time with him. We are hoping things fall in the seizure free 50% for P.J but if it doesn't, that's just fine. Pauly is such a strong little soul and he will power through this---We all will make it through this!

Tuesday, April 30, 2013

Manic Monday :)

Yesterday we headed out to have P.J's FMRI (functional MRI) done. How I understood it, Basically, it allows them to see what areas are working properly by showing the blood flow and oxygen use areas of the brain are using to perform some basic tasks. P.J was sedated during the test and the actual FMRI lasted about an hour. This did give my husband and I the chance to have a coffee date in the hospital, which was nice...sadly when we have time like that we usually end up reflecting on everything going on---sometimes that leads no where good. It's hard to think of anything but what is going on when your sitting in a children's hospital surrounded by children who are dealing with more then I ever had in my lifetime and in most cases more then I ever will's heartbreaking.

Pauly came out of sedation very well, thankfully. The only hard part this time around was that now he recognizes the MRI bed....poor kid looked at me screamed and repeated "uh-uh". He use to take things so well but the older he gets the less compliant he is becoming---totally understandable though, I know I would be the same way. We are just happy that this should be the last of the tests before they go "all in".

Our next appointment is next week with his neurosurgeon and also,next week, for his bayley test through the hospital to get a better idea of where he is developmentally. Until then though, we are going to enjoy this beautiful weather up here in the northwest. A little sun shine and fresh air goes a long way!! :)

Saturday, April 20, 2013

"Hanging in There."

We received appointment dates for his FMRI and for our meeting with his neurosurgeon all of which will happen next week and the week after that.  In the meantime we are just counting down the days till his appointment dates, and trying to get by with as little extra hospital trips as possible.

Sweet little P.J is making great strides with his communication (most of the time things he babbles aren't clear at all but we know exactly what he means most the time...makes caring for him much easier) he is also trying so very hard to cute!  The Little Gym has helped him so much physically (and in many other ways) every week I see this little boy learning something new from them! Funny, his new word is "nany" for candy (of course, haha!)...if we happen to say "No" he does a wonderful thing...throws a fit like a typical two year old! :)

Recent, not so great, developments......
He is now having up to nine hard seizures a day and if what they say about his subclinicals are true, it means he has had at least eighteen all together (on his worse day). They are beginning to last longer as well, around four minutes being the longest so can see him struggle to come out but just can't kick it.  His clusters, strangely, seem to have taken a break though...but I can't say that I mind, I really hate days where he has them. His break days have also disappeared...yet another sign that things are heading in a bad direction. He has begun staring off again as well, which makes me a bit sad. I had been trying to ignore it but I brought it up to my husband and he had noticed it too. He doesn't blink, his eyes dilate, he just stares blankly, unresponsive for a minute or so during these spells....we have not seen him do this since his first surgery but he commonly did this before it. Another new development, he has now begun getting very flushed randomly throughout the day....I can't help but wonder what in the world is going on now.  The redness looks almost exactly the same as it did while he was on the ketogenic diet when he got too ketotic. Maybe somebody will have some insight with this? It isn't that he is over dressed and he isn't sweating so I'm thinking maybe it has something to do with his seizures?

I worry so much for just breaks my heart. We are hanging onto the hope, and trying to keep our faith strong, that things will get better soon.

Wednesday, April 10, 2013

So Here is the Game Plan....

Seizures here lately have been relentless...Grandma even got to experience one of his "Good Morning" seizures before we left for his appointment today.  At this point we were unsure of how much the people at the hospital believed us so we have been recording every seizure with our phones just in case.  Thankfully, we didn't need them as his doctor totally believed everything that was going on.  He told us that he did get some information from the PET scan and his seizure that he had before the scan itself was at the absolute perfect time.  He had just had the radioactive sugar injection about 10 minutes prior to his seizure and any activity in that 45-60 minutes after the injection can be tracked.  They found that the seizure that he had was coming further back on the right side of his brain...  The only bummer is that it is most likely going to impact his motor skills.  To us, right now it is no big deal, he CAN NOT live with these seizures....they are detrimental to his development.  They are causing the speech and cognitive delays and at this point, we feel, he can deal with the motor delay way easier then the speech and cognitive delays.  He wants so badly to communicate with others and play with others but at this point he just can't and you can see the frustration in his sweet little face.  It was so heartbreaking today, he walked up to a woman sitting in on our appointment and stood there staring at could see that he wanted so bad to talk to her. He literally stood there for ten minutes just looking at her right in the face just like somebody would be doing if they were holding a conversation...made my heart ache for him!

Well onto the doctors plan of action. P.J is being scheduled for an FMRI and after that he will have an appointment with the Neurosurgeon and then will have the Grid placement done which will lead directly to the surgery.  Grid placement is similar to an EEG but they will place them directly on the brain (brain surgery part 1) he had this done the first time around but it was done on the operating table so he didn't have to sit around with them on...this time he will be monitored in the hospital for a while.  This will allow them to see exactly where the problems are and what is "good" brain and what is "bad" brain. It will also tell them what exactly they will be impacting if the area of brain is removed. The doctor said that with as often as he is seizing it should only take a couple of days as opposed to the week or sometimes more it can take (so in this case more seizures are better, yay).  After they get the information he will go straight back and have the dysplasia removed for a second time in hopes of FINALLY being able to know the real Pauly....not the highly medicated, seizing, little boy.  The guessed time frame for all this is two and half or three months till we will be on our way to recovery....I can't help but hope it happens a bit sooner...totally ready to move forward with our lives as a family....without the dysplasia!  So ready or not here we go with our fingers crossed and praying hard....onto a second brain resection!

Friday, April 5, 2013

Headed Down a Familiar Road?

This week has been nothing short of a nightmare. PJ had his PET scan on Tuesday which was a step that was needed to try and pin point where all his dysplasia is at. The scan itself took 30 minutes but for a child it is a full day of appointments.  We got in the hospital at 7:30 in the morning and waited around until he was called back to get hooked up the EEG.  PJ did so well hanging around the hospital...he was eating up all the one on one time he was getting from Mom and Dad!

Once he had the leads on we had to wait around for his IV hook up and his Injection of Sugar (slightly radioactive) fluid for a 45 minute "quiet time" to let the fluid get to his brain then wait for the team to come in for sedation.  Really most of the day was just a whole mess of waiting on different people. Very exhausting for all of us...expecially when their play room is for children three and up.  Big bummer for Pauly! 
On a happy note PJ did, however, perform greatly with the leads on and recording.  He had one of his hardest physical seizures to date and struggled to come out of it.  I was so glad it was recorded and I am hoping it leads the doctors to more answers! Once PJ got out from his PET scan at around 1:45 we watched him sleep off the meds for 40 minutes and then FINALLY let the boy eat some food...Poor thing was starved! He didn't stop shoving food in his little mouth till we got home around five.  By far the worst part of the scan is having to keep food and drink from your child...even more so when they absolutely have no idea why it is necessary.

So onto a quick update of Pauly overall.  Things are starting to really worry me with him here recently.  He is now starting to have these clusters of seizures very similar to how they started out last year before he started going into status and eventually was put into a coma to save him.  Actually I don't even think he stops seizing during these clusters but is seizing inside and not physically.  You can see in his eyes that he is not with us...not the look he gets postictal but the look of being waaayy off.  We ended up giving him a dose of versed on Wednesday during on of his clusters and went to the ER and were given the okay to leave after 45 min of being there only for him to have another seizure in the car. He began jerking hard in his sleep once we got home and at that point we drove to his hospital in Seattle where his specialists are which after checking him over and observing him allowed us to go home and wait for more.  I am petrified that we are headed down the same road we walked over a year ago.  Things are slowly getting worse and the intensity of his seizures are getting to be more and more.  We also found out that the PET itself didn't show anything but they said with these PET scans the EEG readings are the most important (?) and those results would be there next week on our appointment day with the epileptologist.  He is going on the board on Monday as well to see what the other doctors think should be done.


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!