Halloween Memories

Since October 31st is fast approaching, I was feeling very reminiscent about some of the great Halloween memories we have had with Beau.  I'm quite partial, but I think he's a pretty cute little boy and I wanted share some pictures of our little man from the past 3 years.

Here's Beau in 2008 as a monkey!

 Here's Beau in 2009 as Yoda!

 Here's Beau in 2010 as Batman!

Pictures bring back such great memories! This year he has two costumes.  I think he will be Superman at school and a football player at home.  After all, Beau is quite the Superman to go through all he's been through and come out so strong.  And he is obsessed with football so the football player seems like an obvious choice!  Looking forward to some great pictures this Halloween and some even better memories.

A strange event...

Last evening something strange happened with Beau.  Shortly before we sat down to eat supper, Beau was playing in the living room just off the kitchen while I was making supper.  Andy and I were there and Beau had been playing great and walking around following Andy.  All the sudden it was like someone had flipped a switch.  Beau started to whimper and then he fell down.  It quickly became apparent that he didn't have the use/feeling of his right leg.  We'd stand him up and immediately catch him as his right leg wouldn't support him at all.  We laid him down and Andy tried to manipulate both legs trying to get Beau to lift them up and kick at Andy's hands.  Beau easily lifted his left leg up high and pushed back on Andy's hand.  He couldn't get his right leg to raise even a quarter of the distance his left leg did and you could tell he didn't know what it was doing.  He was quite scared - as anyone would be when they suddenly lose function of a limb.  To avoid scaring him anymore, we set him in his chair for dinner.  He ate pretty well but still whimpered periodically throughout the meal.  Beau isn't a cranky kid so we knew something wasn't right.  After dinner I held him and took him back into the living room to play with him and his toys.  He has a table he likes to play at and normally he will walk around it.  He crawled around the table being very cautious.  I got him to stand up to look out the window and he pulled himself up and his right leg stayed out to the side and behind him.  It was holding him better but still not moving like it should.  Over the next ten minutes it seemed that the function slowly came back and eventually it was as if the event had never occurred.  The whole event from start to finish lasted about 40 minutes. 

I left a message this morning for our neurologist.  The event itself was scary but it really doesn't surprise me since we know that there is an abnormality in the brain near the right leg.  In fact, knowing that piece of information is what kept me calm and didn't completely freak us out.  It's worrisome though that this is happening because I don't believe that this has ever happened to Beau before.  The brain is such an amazing machine and every day I learn more and more about how much control it has. 

Beau didn't sleep well last night either.  He tossed and turned for the first couple hours of sleep and we finally got to sleep around 12:30.  He seemed to have a few leg movements but they all seemed benign.  He whimpered quite a bit like he couldn't get comfortable.  It's moments like these that make me wish so terribly that Beau could talk and could tell me what hurts or what he is experiencing. 

PET Scan is done and the results are in.....

So I've gone back and forth over the last month since the first discussion with our neurologist about the possibility of Beau having an additional congenital brain abnormality known as cortical dysplasia.  The doctor, not having seen it on Beau's early MRI had ordered another one but even still had told us, it most likely wouldn't show up on MRI and that we would have to have a PET scan.  Of course if you're reading this, you've most likely read our post earlier this month about the MRI and how it didn't show cortical dysplasia.  We were prepared that it might not show up on MRI so it wasn't a huge let down, but it still made us want the answer that much quicker. 

Fast forward to Wednesday (2 days ago).......We took Beau to Iowa City for his PET scan and were fortunate enough to get the best sedation team nurse, Roger, once again.  I feel like he's becoming part of our family.  I guess in some ways he really is - he's a part of our hospital family.  After a stressful time for Beau of getting his IV put in, in the Pediatric Specialty Clinic, they sent us downstairs to the PET scan department.  Roger met us down there and explained to us that he would be administering 3 different drugs to Beau - different drugs than were used for the MRI because this test would be longer and required that he not wake up and move at all during it. 

The first drug, Versed, was administered.  This is a drug that for a long time, we actually used as a rescue drug during a seizure.  This is commonly used among anesthesia as it helps to calm a person.  It calmed Beau and next came the Propofol - or as many people now know it - the drug that killed Michael Jackson.  Roger had warned us that when the drug is administered people can become excited and their limbs can kick and flail.  I was holding Beau during this and his body did just that, but the movements became very erratic and his eyes rolled back into his head and his legs tightened up.  Roger recognized it as a seizure right away and grabbed him out of my arms.  A doctor and a PET scan nurse were in the room as well and all jumped into action.  The seizure was short lived, only about 20-25 seconds.  I was shaking badly and Andy and I just stared at each other.  It wasn't exactly the way we had thought the day would start for Beau.  The seizure changed the way that they would read their test, but they said that they could still do the scan.  After Beau was out from the sedation, they started administering the radiotracers.  That process took about 45 minutes for it to get into his body.  After that was completed, they took him in for his test which took about 30 minutes to do.  After a short time in the recovery room, they drew some labs and we were free to go home. 

Yesterday I got the phone call from our neurologist.  She started off talking about the most recent blood level of Tegretol.  It was low once again.  It seems that Beau's body just doesn't seem to be phased by some of these drugs.  Because he has had some different types of small seizures over the last month and because he had a seizure right there in the hospital, she increased his Tegretol once again.  Three times in the last month he's been asleep for at least an hour and then he opens his eyes, they have a blank stare, his arms and legs elevate off of the bed and they are stiff, straight out and begin to shake.  The episodes last about 30 seconds and then are over.  Once again, some seizures that are breaking through 3 different drugs.

The next discussion was the PET scan.  She talked about his seizure and how it made them read the test differently but how it really helped in lighting up the affected area in the brain.  And when I say area, it's singular.  As of right now, they see ONE small area near the midline, on the left side of the brain.  The amazing thing is that this is exactly what Dr. Joshi had predicted a month ago.  She noticed how he tends to drag his right leg, the EEG showed certain information and she went off of what we told her happened during a seizure.  Without having a picture, she had predicted she would find cortical dysplasia, near the midline, most likely on the left side.  We found just that.  The area affected, is so close to the area that controls his right leg.  Which obviously makes sense since he has a tendency to drag that leg when he walks.  We now know, that surgery IS an option, although it's likely that something may happen to the function of his right leg as a result of the surgery. 

Here is what the plan is.  When a child is diagnosed at such a young age with epilepsy, she likes to have it under control within 2 years before surgery is considered - if surgery is even an option.  We're at 2 years now, but she likes to call our first year after his diagnosis a "honeymoon period" because his seizures were under pretty good control.  So for the next several months I have to contact the neurologist every 2 weeks to update her with information from his seizure log.  As breakthrough seizures continue, the drugs will continue to be adjusted.  Once the Tegretol is at it's max (we're pretty close) then the plan may be to switch to Depakote.  The goal is not only stopping the seizures, but getting those constant spikes in the brain under control to try and help his intellectual growth.  The spikes occurring every second in his brain are hindering his intellectual development.  The key is having the right combination of drugs, that work differently, making sure one of them is controlling all the spikes and getting it right to prevent breakthrough seizures.  If the multiple medications don't work for Beau then we have to talk seriously about the risk vs. benefit of brain surgery.  No parent wants to think about that nor should they have to.  The risk is high that surgery could damage his right leg.  But, is the risk higher that constant brain spikes and seizures would be more harmful? 

I guess I praise God that maybe there is an answer for Beau.  Some people with epilepsy don't have an option.  More testing would be required to be 100% certain, including another PET scan (one where he doesn't have a seizure) and another inpatient EEG.  The way it looks now though, is that surgery is an option for Beau down the road.  Theoretically the surgery would remove the abnormal area and hopefully eliminate the seizures and the spikes.  If that really worked, what might Beau's potential be?  Maybe he'd be able to learn even more, but maybe he'd walk with a limp.  There are no guarantees in life and certainly no guarantees that everything is full proof.  Beau is who he is and he's wonderful and will always be intellectually disabled but the thought that maybe he could have an even brighter future gives me some peace. 

This result was my "best case scenario".  I had let plenty of people know that this is what I thought could be the best possible outcome.  She didn't call and say that multiple areas of his brain were affected and that surgery would never be an option.  That was my worst case scenario.  Beau has an "out" if these drugs don't work for him.  I cry when I think of brain surgery on a toddler and not just any toddler, my toddler.  BUT, I rejoice in the fact that he may have an opportunity to potentially live seizure free.  What an amazing life that might be for him......

Tomorrow's PET Scan

Well tomorrow Beau goes back to Iowa City for his PET scan.  All the appropriate staff from the U of I have contacted me and they are all set.  I had the PET nurse explain to me in child-like terms exactly what happens during the scan.  Let's see how I do at explaining......

Because Beau will be having sedation, he is not to eat or drink after midnight.  The PET nurse explained to me that she doesn't want Beau eating or drinking for another reason.  Apparently the PET scan is a metabolic test.  They want the tissue, cells, muscles etc. hungry for glucose.  Once they get Beau asleep, they will essentially inject sugar water through his IV.  Normal healthy tissue will absorb the sugar water whereas unhealthy or abnormal tissue/cells, etc. will not.  They will be watching to see what areas of the brain aren't grabbing onto the sugar.  That is my generic understanding of the test but it seems to make sense to me.  Locating this abnormal/unhealthy tissue in the brain will tell them where the seizures are originating from.  This whole process will take longer than the MRI so best of luck to the sedation team in keeping Beau out for 1 1/2 hours.  The sedation team may need a backup sedation team!

My prayer is for an uneventful morning of testing and answers to our questions.  After we get through tomorrow we'll look ahead to Friday when Beau gets tubes put back into his ears.  First things first.....

Beau's favorite old sweatshirt....

I was going through Beau's clothing for a recent garage sale and was sitting on the floor sorting when Beau came over to check out what I was doing.  He realized the clothes were his and he reached in the box and grabbed out an old red Nike sweatshirt that he had worn quite often - when it fit him.  The sweatshirt is a size 24 month and Beau wears a size 3T so naturally I was going to sell it.  It's a good thing I didn't.  He grabbed the sweatshirt from the box, motioned for help to remove the shirt he was wearing and wanted help in getting the old red sweatshirt on.  I told him it was too small, but he insisted so I thought, whatever, and put it on him.  He stood in front of his mirror admiring himself and the following pictures are a result of his trip down memory lane in his favorite sweatshirt! The very last picture is Beau in his sweatshirt when he was about 16 months old - back when it fit him!  Enjoy!


Probably my favorite picture of all of them - his 2 chins are the best with the serious face!



This is his pose when he is super excited about something - like finding his long lost sweatshirt!



Just being silly in front of the mirror.



Doing his famous SURPRISED look!



Tada!

And the way the sweatshirt used to fit back in 2009 when he was 16 months old.........

Back when he was a tubbo at 16 months with grandma - when the sweatshirt fit him and his 2 chins much better!

Guess I won't be selling it anytime soon.....I'll store it and keep it as a memory!

MRI and the results....

Yesterday was Beau's second ever MRI.  Thankfully Beau's Aunt Gabbi was kind enough to drop off a container of trucks and cars that cousin Lucas wanted to give to Beau from his own collection.  As you can see from the picture, Beau was very excited for the new toys and it made our drive down and time at the hospital, a little easier on him. 

We arrived bright and early at the University of Iowa for the test.  We were blessed with a visit from our awesome social worker, Jim shortly after we got there.  He always checks on us and makes sure we don't have any needs he might be able to help us with.  Beau was doing well at this time - around 9 AM - as he hadn't had anything to eat or drink after midnight.  He was starting to sign "drink" while we were in the lobby waiting for the MRI but otherwise he wasn't grumpy or crabby at all.  A sedation team nurse came out to the lobby to visit with us.  When I looked up to see him I recognized him as the sedation nurse we had, had for Beau's first MRI two years ago.  His name is Roger and I immediately said to him that he was the one who had been there for Beau's initial MRI.  He checked the computer and found that I was right.  I reminded him that I would never forget that day and would never forget the doctors and kind people that were a part of it.  Roger is probably in his fifties and is just amazing with kids.  He was so good with Beau.  He checked veins all over his little body and put numbing cream on several locations. 

After about 30 minutes, time enough for the numbing medication to take effect, Roger came back out and got us.  At this point, Beau was catching on to the fact that once again people in white coats and scrubs were surrounding him and it might be painful.  He started to panic and was pretty upset.  Roger got the IV in his hand on the first try but Beau was hysterical.  He doesn't usually get that way - especially when the hand was numbed.  Heck, this poor kid has had so many needle pokes and tons are without any numbing cream and he does fine with them - better than I would!  As Roger put it, unfortunately Beau has been around this type of stuff so many times, he knows what's coming and it's starting to scare him. 

Roger got the first dose of medication into Beau.  It took about 7 minutes and Beau was asleep.  It made him upset as the medication went in and he fought the drug but eventually he was asleep.  He made the cutest little cooing noises as he lay there in my arms sound asleep.  We waited a few minutes and I stood up and laid him on the bed to transport him to the MRI.  It was like he sensed the altitude change lol.  He woke up so fast and started screaming and fighting.  I picked him back up and Roger had to add a second dose.  This time he was out for the count.  The radiologist spoke with us and explained a few things to us and then they took him for the test.

After only about 30 minutes, the test was complete and from the waiting room, I could hear Beau's cry.  Sure enough, the doctor came around the corner to get us.  Roger was holding Beau instead of Beau being asleep on the gurney.  Roger said that when he went to transfer Beau from the MRI table to the gurney, he woke up so fast.  Roger laughed because he couldn't figure out how he could wake up so fast with all the medication in him.  They transported him upstairs to recovery and Beau fell back asleep.

After about 15 minutes we woke him up to see if we could get him to drink so that the IV could be removed and we could go home.  He took his drink and out came the IV.  It was time to head home!

Above is a picture of Beau shortly after we got into the car and were driving home!  He is out and super pale!! He's one tough kiddo though and we were so proud of him.

Today I received a call from a nurse in neurology at the U of I.  The preliminary report was back from the radiologist.  There weren't any new findings on this MRI or any changes from his initial MRI from 2 years ago.  This is somewhat expected, as Dr. Joshi had warned us that she may not be able to see cortical dysplasia on an MRI.  She had said that if she didn't see it on the MRI, then she would order a PET scan.  Now I wait to hear from Dr. Joshi and I look ahead to another test.  All of these tests are required anyway if surgery becomes an option or recommendation.  There is a series of steps and I guess we need to look at this as Step One in the series.  I wasn't sure how to feel when the nurse told me the results.  Relieved that there is nothing new on there?  Yes.  Disappointed that they didn't see something that could be the cause of the seizures and might be fixable?  Yes.  Understanding of the fact that the MRI might not show the cortical dysplasia and that the PET scan might ultimately hold our answer?  Yes.  I am glad there isn't anything aside from the P-ACC, which we of course already knew about.  I am half hoping though that the PET Scan shows cortical dysplasia that may be surgically fixable.  Or it may show cortical dysplasia, but there may be so many areas affected, that surgery isn't an option.  If surgery was an option and meant that Beau might be able to live life seizure free, wouldn't that be amazing for him?  It's all a bunch of "what ifs" so I guess I can't sit around contemplating until we know the facts.  The pieces of Beau's Medical Puzzle are slowly falling in to place.  Some moments I wish they were falling in to place a lot quicker. 

For today, I rejoice in the fact that no new, major issues were found.  For that, I am grateful and God is good.  Tomorrow we'll worry about Step Two. 

Tomorrow's MRI....

Looking ahead to tomorrow and thinking about Beau's MRI.  This will be his second MRI, his first one having been when he was only 17 months old.  The neurologist said that when the brain is that immature, it is hard to see certain things.  With the increased seizure activity and status seizure she wanted another MRI.  She believes that now that his brain is older, she will be able to see things more clearly.  Obviously we already know he has P-ACC, but she is fairly certain she is going to find cortical dysplasia.  We have mentally prepared ourselves for that but if the MRI shows something additional, I'm not sure how we'll react.  I guess we'll react like we have with everything else.  We'll listen, take it all in, ask questions and move forward.  After all, not matter what, God designed Beau's brain in such a rare and special way that it's made him an incredible and loving little boy.  The sedation team will meet with Beau around 9:40 AM tomorrow.  They will get him ready for the test, put him under anesthesia and then the MRI begins around 10:30.  They expect it will last until at least noon and then he'll be in recovery.  We are going to have one hungry little boy when he wakes up!  It will be a day or two before we'll get the results so we'll work on making it through tomorrow and worry about the results later.  If the neurologist doesn't see what she needs to see on the MRI, we will go back at a later date for a PET Scan. 

This photo is of Beau's brain at 17 months on MRI.  It will be interesting to see the difference in the image with the new MRI.  It's all in God's hands and we are just happy that we will be filling in some more pieces to Beau's medical puzzle. 
Beau will just be happy because he'll get to have a lazy day, we'll get him Subway when we leave the hospital AND he'll get a new car/truck toy as a present!  Prayers for a good day tomorrow!