5 Years Later

"...considered one of the most radical of epilepsy surgeries"  - Cleveland Clinic information packet on Epilepsy Surgery

I remember getting the big packet in the mail prior to Bub's first appointment. We read it all, looked it over, and talked through it. We knew when we found that section that the description fit Ayden's needs. His stroke a year earlier had left damage in his right hemisphere. The damage left many deficits and difficulties, but Epilepsy was and still is the worst. When we set our appt. in Cleveland Ayden was having and average of 100 seizures a day. He was irritable, moody, and tired. How do you even consider disconnecting or removing half of your child's brain. Was it EASY? If you spend just a few days, weeks, or months  watching your child slip away, suffering daily, and know that the only thing that can help is a "radical brain surgery" the answer to that question becomes obvious.

Ayden had his first Hemispherectomy (functional - disconnection/partial removal) was October 29th, 2009. Ayden celebrated his second birthday in the EMU post op. It is ironic how both his hemiversary and birthday are so close together. There was the moment when I saw my boy, without the static/cloud in his eyes. The first time in a long time that he was truly there. It was like a whole new birthday for him, he was really there.

Has it been a Happily Ever After...no, BUT the decision is never debated or doubted. It was not the start of his journey, nor the end. It was however, a very important event and so successful it does need its own celebration each year. "Seizure Free for ______" won't be a part of this years FB post or tweet, but we are still in a better place. We are surrounded by an amazing Hemi Family from all over the world. The insight and support is priceless. There is a look I have exchanged with many loved ones over the past few years. It is the "Did you see that? Was that a S-?" look.  That look has happened within the last few months, but Ayden is doing really well otherwise. Today, we are going to focus on some good news and pray for the rest.

Friends! After school Care! I Make Bubbles!

Ayden absolutely LOVES his friends at school and this year, and aftercare has been a blessing in so many ways. He is doing very well with his academic progress and I love to hear the occasional story of him "fitting in" with the first grade line. :) My favorite scene this year is watching him after-school playing basketball in the gym or on the playground. It is not just parallel play but real interactions. It is times like this that I get excited about the possibilities. Potty training has still been up and down, but the fact that we are working on it makes me smile. it will comes in time, Ayden's time of course. 

Prayers for the "episodes" we have seen, and prayers for continued progress and celebrations.

All of the above would not have been possible without all our prayer warriors. Bubba's story is "To Be Continued" . We cannot wait to see where he goes.

If you have an extra 4 minutes check out Bubba's video below:

A Celebration Video

The Right Choice

Ayden absolutely LOVED his time in the pool this summer, but did not care for staying home much. In August, the itch to return to school was definitely there, and he is very happy to be back. The kids took their last swim in our pool for the season last night. We really enjoyed our summer as a family, and I found more times than not Ayden and Nessa were PLAYING TOGETHER!!! Yes, this is actually something that used to be pretty rare so I was very excited to watch. I was home all summer, no 4-H judgings, no cheerleading,  and very little time at work. I simply turned them all down this year and learned to say "No". Being home with Ayden rekindled the desire to stay on top of all his needs and address some things that had been ignored. This may sound odd to parents of healthy kids, but I know my SN mommas understand. We started in June with a fitting for new braces (something I put off for months to avoid taking more time off). I started keeping track of his activity, food intake, lethargy, and when Ayden would melt down. We went to see Julia each week at therapy, and finally received his new orthotics and wrist brace the week before school. I tried to fit EVERYTHING into the summer, but July did not go as planned and we are now getting ready to hopefully solve a problem that has been brewing for a long time.
   When we went to Children's in March our team said we had two problems and at that time we fixed one, the new seizure onset. Although Bub is a little unsteady(common side effect of the med), he has not had more than a few breakthrough seizures a month since March. That is far better control than we had in January and February. It is not seizure free, but there are still a couple meds left before we explore another surgical option or the VNS. The second problem we had was Ayden being extremely tired within hours of waking up. He becomes very tired, moody, cranky particularly at 11 AM and 5 PM(Yes, even with food in his belly). Dr. Lew explained that the shunt Ayden has drains anytime he is upright. Given the pattern of what we see we are guessing he could actually be "over-draining" daily which is why he is so happy in the mornings and fades as the day goes on. There is no real way to be sure that this is the problem, and we knew it was secondary this spring, so we waited. I called this summer with the data I had. On Thursday, we will revise the shunt with a device that prevents the draining due to position. It is actually a pretty simple outpatient procedure.
If it is that easy why did we wait?
Yes, we decided to remove half of our child's brain, but he was seizing like crazy and fading fast. This time around the risks vs. benefits are not cut and dry. Ayden is and always has been asymptomatic. Beyond gut feelings he usually gives little to no signs of problems as we have learned the hard way too many times. We are taking the chance that this is what he needs and that his old shunt will continue to function properly(hopefully even better) after the procedure. The last time he was flown to Cleveland he had been doing so well in the hospital we were talking discharge the night before he crashed. Then again at CC in the ICU we watched him slip away a second time with little to no signs. Our neurosurgeon in Wisconsin wanted us to stay "in town" for a night after the procedure, but we are already taking two days for follow ups with our Neurologist and then the surgery the next morning. The concern is simply: When we go home what do we do IF there is a problem? This was another question we needed answered and our pediatrician is confident he can get us somewhere to get help quickly(since Milwaukee is just a little too far for a transport).
If this works his typical 12 hours of sleep a night should be enough to last the day without him becoming too tired or cranky. It may help lessen some of the sensory seeking he has been doing more of lately, and help him grow even more. We really do not know what the right choice is, but we have waited long enough we have to TRY to do something.
Last January, we left a facility and doctors that we trusted for years because we knew we had to do SOMETHING. Two months later, our son's seizures were decreased by 70% and are now very minimal. Within 24 hours, I knew we made the right choice, this time we are hoping for the same positive outcome.
Your prayers would be appreciated on Thursday morning and the days after. I will be the overly sensitive and worried momma for awhile until we are out of the woods and feel confident again.

A Healthy Summer

I always hesitate to write a new blog when things are going well. I guess I worry that it will be a jinx of sorts. However, our last post was in April so we need to write something. So many things have happened in the months since then, but most all of it has been good. Ayden finished his school year almost completely seizure free. I wish I had some good photos from Camp Rhino this year, but trust me Bub loved camping. He was so excited that his regular bus drivers were not greeted with smiles on camp mornings. He pleaded, "Darlene camping!"

 In June, we headed to the Smokey Mountains for our first real family vacation and although we were nervous he handled it very well. Every once in awhile he would ask "Where are we going?" and answer himself(after our answers during the first part of the trip) with, "On Bacashin". He did well at the pool and tolerated a few dinners out at restaurants, but preferred cereal and mac' cheese at the condo. He did well with downtown Gaitlinburg and enjoyed the Tram to Ober Gaitlinburg where we found a pay one price carousel and he was in heaven.

 We stopped at Holiday World on our way back home and he LOVED IT!! I have always heard positive things and I can say they were fabulous with him. We didn't realize he could get a special pass so after the first hour or so (and 5 different employees asking me if I knew I could) we went and signed up. It was nice because it allowed us to use the shorter entrances and then we just waited for Daddy and Sis to join us when they made it throw the lines.We were gone less than a week, but long enough for Bub to enjoy being home and ready for routine.

 Our only routine is Wednesday therapy at Parkview. He LOVES his Julia and works hard for her despite whining and trying to "cheat". :)
We have ordered new braces for his ankles/feet/left wrist so he will be ready for school. I wish our insurance allowed more time with Julia and that it wasn't a 2 hour round-trip drive or we would go to therapy every day all summer long. He makes great gains each summer, but then we seem to lose some when school starts again. I have decided to try to get him to Julia at least once a month throughout the school year this time to see if we can try to stay on top of his progress.

 A big help in the summer is the chance to get OUTSIDE and swim. Bub is such a fish and still loves his swing so much I get tired pushing. :) He is tall enough now we let him swim without his vest in our pool and he has started swimming under water. He is so independent and proud in the pool it is awesome to watch. If I ever get video I will post as it is a must see.
 Ayden has had very minimal seizure activity on his current medications. I love providing seizure freedom, but still have a few concerns. He had his surgeries to eliminate the need for meds and now we are back on them. There are a few things I am keeping a close eye on. I do not like his loss of appetite, and it is not a direct side effect of the medicine, but could be caused by a high ammonia level from the meds. His loss of some coordination is disturbing to me and his PT confirmed it is a very common side effect of this med. We didn't notice when he was on it before because he wasn't walking and was having so many drop seizures it was hard to tell.

 He has definitely been more moody and had more fits, but it is summer and we have not kept a routine so it is hard to tell for sure what has caused that problem.
We were to go back to Wisconsin in July for a follow up, but it is now scheduled in September. On the bright side, we will have lots of data to bring with us and discuss with his neurologist. As he starts school I would like to see if the anger/frustration subsides. It will help decide if it really is a pressure issue as suspected in the spring.

His pediatrician is following our concerns as well and referred him to a nutritionist which may help us insure he is getting what he needs. Yes, Bubba has a "reserve", but we have to feed to brain to help it continue to heal and grow.
Our plan for the rest of the summer is to continue to relax and enjoy it!
Thank you to all of you who keep Bubba in your hearts, thoughts, prayers!  -The Hoffmans

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This spring we sold Ayden's old adaptive trike to another hemi kiddo and Bub was not happy to see it go. We have made it through the summer so far with minimal fuss, but Ayden is very jealous of Sis when she bikes. He also LOVES when he gets to use the bike at therapy. I was online looking at the bigger sizes of the Rifton trike he had before and decided to set up a kiddie pool fund through Adaptive Mall. Ayden is still on the waitlist for  waiver support, but therapy trikes aren't covered by insurance so we have are saving again for his new one. I am posting the link to his kiddie pool site here and on his home page.http://www.adaptivemall.com/ayden.html

No News is Good News...

His special shirt from his friends.

 I do hope the fact that I waited two weeks to post has not alarmed anyone. As I have stated before sometimes we are just busy and I never want my post to feel like a "have to" on my list. I did post a few quick updates on my FB wall, but when we returned it was still really busy here and then came Spring Break. If you read the long version of this post you will understand why a new update has not been a priority.

Bub absolutely LOVES the freedom of the pool!

The Basics:

• How is Ayden? - He is currently SEIZURE FREE! 
• Are we headed back to Milwaukee soon? - Not until this summer.
• Is he making gains again? - YES! We have heard things in the past week that disappeared months ago.
• Did we get to go on vacation for break? - Tennessee was postponed, but yes we had fun. :)

Where do I begin the LONG VERSION...well let's go back to the hotel when I posted last. Bub and I had a great morning, he made sure to ask for a napkin when he spilled milk all over his iPad and I was able to pack everything up pretty quickly so we had lots of time. We even relaxed in the room for a bit after breakfast, we were set and on time to be an hour early (enough time to get some lunch and find where we needed to be). OK, yes those that know me find that last sentence hard to believe, but I always plan lots of time for appts. like this. The morning was going great until just outside the city. This slight knock I heard from my truck become a very loud noise quickly and I found myself watching every mile marker as we approached our exit. As I exited the highway my truck stalled at the stop. I knew I only had two city blocks to go so I shut it off and turned it back on each time it stalled at intersections. Yes, I knew I was likely killing the truck but I was getting Bubba to his appt. no matter what. It stalled one last time in front of the hospital, yes I did get some looks, but we made it! Then I called for a tow truck... We sat in front of the Children's Hospital for an hour, I called at one point to let them know I could wave through the window, but we would be late because we could not leave the truck.
  Despite being late Ayden was hooked up and ready to roll quickly. He did fairly well with it all and started seizing enough for the nurses to call them seizures and not "episodes" within about two hours. The original plan was 24 on VEEG to collect data, then 24 hours on the new med. Within 3 hours they wanted the med because they had all the data they needed. Of course that required an IV so we met several IV teams (Transport, NICU, ER) and about 7 attempts later they were done. The important thing here is once they were done Ayden calmed down and still talked to his nurses, this is a huge improvement. We started the Depakote around 4 PM and I still noted events through the evening and in the morning. He took the medicine very well orally which was a huge surprise for me given all the meds we have struggled with before. The best part was some reinforcements came to help out. Mom and my brother, Justin, drove up late Friday and I was ready for a break when they came Saturday morning. Bub was good with Mami's undivided attention, and could have cared less if I went home at that point!

Our doctor came and explained what they captured and the plan. He said the had significant seizure activity within those first few hours, enough to prove the need to stop them. The Depakote reduced the EEG activity by 70% almost immediately. He was really happy and surprised it worked so well so fast, but wanted his level higher before we went home. He also wanted to make sure it wasn't just an fluke. They increased the med and sent us home on Sunday. Justin drove us over halfway since my truck was not leaving WI anytime soon.  Unfortunately, Ayden got sick in the car on the way home and then again the next night, and the next day. With all of the vomitting we started having trouble with the meds because Ayden decided he was over it.
  Ever met Ayden? Ever met me? Ever met Justin?  

Well, when Ayden decided to be DONE it became WWIII at our house. I used every tool in my child life degree, TRUST ME!!! I started battling in the mornings and could only get him to take it with the threat of no school, that worked only when the bus was actually IN our driveway waiting. At night I put him in time out on his stool until he took it. Yes, we tried bribes first...candy, cookies, etc. It got harder as the week went on and he was throwing up what we could get in some nights. The one night we spent over two hours trying, we had dramatically bagged up almost every toy the kid owned and he finally took half his does before he was too tired to stay awake...Ever since at night he has taken it. Maybe he figured out that his stubborn pride was genetic and together mom and dad really could outlast him. We don't talk about it, but he knows it is hiding in the cereal bar and just doesn't want to fight about it anymore. Prayers were answered!

So that is it?

The vomiting stopped after a week. The doctor backed the dose back down because we called and shared our dramatic first week and he is still seizure free. We waited on the blood draw a few extra days since some doses were not right the week before. The results were received on Friday and the nurse called to tell us his ammonia level was high. Depakote is not a new med for Ayden he was on it years ago and it spotted his liver then. So now we wait, the seizures are stopped, but his body needs to be able to process the medicine correctly.  Time will tell I guess, yes as his mother, I am worried. However, seizure freedom is AWESOME! We changed our original plan to go to the Smokey Mountains for a few days, since my truck needed a new engine. However, we were able to make a vacation out of the trip to get my truck when it was done on Thursday. It was nice to do something as a family, and for Bub it was nice to go somewhere WITHOUT being poked. :) We went to a few of the places we talked about on our previous trips and Sis was able to see the "Milwaukee" we had been talking about. Prayers were answered and I have no doubt that Wisconsin Children's is where we are to be from now on. I could write an entire post about the amazing differences in facilities, procedures, and most importantly the staff. CHOW even has its own navigation icon on my phone. :) Thank you so much for all of you prayer warriors out there, especially all of our Blue Ball Family that never fails to keep Bub in prayer.

Now, we hope to enjoy the new Ayden with a bit of a sparkle in his eye again.

 Remember, no news is good news! :)

Turning Another Direction

I have found that packing for these trips gets harder and harder to do. I think I am just tired, or at least  frustrated at the thought of doing the same things over and over again. It was funny as I approached 80/90 (an hour later than planned) I found myself looking up to see an option to go left or right. One way heads east to Toledo then Cleveland and the other Chicago then Milwaukee. It made me think for a moment about the decision to seek another opinion- to stop turning the same direction so to speak. For a moment it was refreshing and helped keep me going. About 4 hours later, we arrived at Racine for the night. Ayden was quite the trooper motivated by the idea of swimming when we reached the hotel. He was no trouble in the car and even "Found the Pee!" each time we stopped. OK, so the Twizzlers, Chex Mix, and M&Ms might have helped too. I was nervous about staying at a hotel with just Bub, we have traveled together before just the two of us, but not with an overnight stay prior to admission. I was really feeling proud of myself until I went for the rest of our luggage and found myself locked out...Yep, Ayden is tall enough to flip the door lock and made sure to do so when I left appearently. Fortunately, he did listen to mom and unlock it after a minute or so of all sorts of scenerios running through my mind while stood in the hallway. He did get to swim and we ordered pizza. He was very happy with his date night..then the question came, "Mami's house?" I didn't bother to lie because the truth is he already knew. He asked about sis before we left school and really didn't want to leave with me today. He knows, so I told him we have to see the doctor tomorrow and go to the hospital. His reply, "No." :(
I hope tomorrow goes smoothly and he settles in, we will see. The VEEG will be 48-72 hours, and they will introduce another medicine to see if decreases or increases the seizures. Perhaps this time the medicine will work, if not we will go home on another one to try. Ayden has a 24 hours rule with hospitals typically (as in he can turn into a nurse's worst nightmare quickly). We are going to hope for 48 hours, but more importantly we are going to hope for answers and information that can lead us to a solution for the current seizure onset.  I probably won't post again until we are home as the next couple of days will be spent on the unit trying to keep Bubba happy(yes, the iPad is charging as I type this).

Options and Answers

Our trip to Milwaukee was a successful venture. For Ayden, the fact that we stopped at Rise and Roll both on the way and tonight made the trip, but there was much more to it than that. We met a new neurosurgeon and neurologist at Wisconsin Children's, both doctors were very helpful and we feel like we learned a lot. Most importantly, they truly cared about our Bubba and wanted to give us the best answers they could.
Ayden has two issues at the moment:
1. Head pain that is causing aggressive behavior.
2. Seizures - Myoclonic jerks and drop seizures causing decline in muscle movement and cognitive function.
Today it was made clear that both of these are valid concerns but likely caused by two different issues. For the first issue we can add a device to his current shunt and hopefully fix any possible overdraining. The procedure is about 45 minutes and outpatient at that! Since we do live over 4 hours away he would like us to stay overnight to insure all went well if/when we do this. This is something we have suspected for quite a awhile so the quick fix is exciting.
Next, the seizures that answer is two fold. First, from the neurologist's standpoint we will try a VEEG with IV dose of a medicine he used to take to see if there are any changes in the seizures. If it works we go home on the medicine, if not we go home on another medicine and hope it works. The neurosurgeon found a centimeter of the right hemisphere that could be removed with another surgery, but we have no guarantees it will work so we are willing to try the medicines briefly(this is key). The benefit of the VEEG medicine scenario is that Wisconsin can then look closely at his seizures and we need to "try" other options first. The neurosurgeon explained the surgery and it would be much less invasive than his previous two hemispherectomies. There are always risks, but allowing our son to have drop seizures and continue to lose function with continuos seizures is full of risks too! The most powerful statement all day was from the neurologist,"His declines are very concerning and there is obviously something wrong that needs treated." We have waited for those words and it felt good to be surrounded by a staff that seemed to get it.
We have only sought a second opinion once before when Ayden was first diagnosed with Tourette's syndrome. That opinion was reversed days later and I am so glad I trusted my gut then. I think the same has to apply here and we are glad that a fresh set of eyes could lead to answers. Now it is back to waiting on calls from Wisconsin to get everything set up and of course tracking data. Thank you for all the support and prayers. We truly feel that we are on the right track to a healthy Bubba soon.

Doing Something

Sometimes on this journey it feels like we are just helpless bystanders. Ayden's seizures started at a daily rate over a month ago, I have felt an urgency to get help and answers. We have tried only to find ourselves a bit more unclear about exactly what the problem is. We went to the doctors we have trusted for years and continue to rely on for answers. The problem is no one seems to have any solutions, and yet Ayden keeps seizing. We had been trying another medicine until last week when a rash appeared for a few days straight (google "Onfi rash" to get a glimpse of  our concern). He was quickly weened off and we are waiting for the rash to disappear completely before pairing anything else with his current medicine. Did the medicine help? No, he is still seizing.

So, the good news...We have an MRI scheduled for Wednesday. After the MRI we plan to send the films to two fresh sets of eyes. We will be heading to Milwaukee for a second opinion from another neurosurgeon and neurologist. The sheer relief felt today when we finally had an appointment set, after two weeks of phone calls and records requests, was amazing. There is not much we CAN DO as parents but try to seek more information and recommendations. In preparation for our trip we visited our Parkview PT that has worked with Bub since he was 2. She knew when we came in there was something wrong, and after seizing a few times in the lobby Ayden worked with her as we talked about what has happened since she last saw him in Sept. Her assessment is a crucial piece of data to take with us on the 5th, but the results are not good. Her impression was that Ayden has lost most of the muscle tone and range he had gained by the fall after a summer of therapy. While this may help open a few eyes to the effects of his seizures, it is disheartening to know how hard he worked to get to that point only to have lost it in a few months time. So now we wait, the appts. are set and we need to pray for answers. What is the biggest concern now? The unknown, what if they don't find an answer? I can't imagine ever believing that this current level of seizure activity and regression is ok, normal, or in any way acceptable. There has to be an answer...

The Little Things

Today I wandered down the hall at school, into the other wing and through the the 2nd grade pod (Bean's pod) toward Bubba's classroom. My "reason" to stop was to double-check that he would go to aftercare after school today. The real reason -  I was able to get a big squeeze in the middle of my day. He has that way of making you smile no matter what. He has always known so much more than anyone gives him credit for and he is sensitive to what people are thinking and feeling. I am so blessed to have him in my building where I can get to him in less than 2 minutes if needed (ok, maybe faster ya'll have seen how I walk!), but also trust him to be happy at school where he wants and needs to be.

 So "How is Ayden?" -  Ayden is at school and I am back at work, when it is in session. 

Nessa Bean and Bubba 

 Ayden is still seizing daily and they are becoming more pronounced. Enough that Nessa actually celebrated, "I can see the seizures now too!" When I was choosing to ignore it at the table the other day Nessa spotted it with excitement. That has taken a bit to get used to, but what a blessing to have another set of good eyes on Bub. She wants so badly to understand all this sometimes and she is truly excited to feel like she finally sees what we are talking about.

Cleveland advised to change nothing, do nothing, and just call them in a few weeks. As you can imagine doing nothing was not on my agenda last week when we spoke to them. After that call last Tuesday, I set up an appt. with our local Neurologist on Friday. She was the first neurologist that started solving Ayden's epilepsy mystery in 2009 after one very bad misdiagnosis. She is our local neurologist and has been right on each time in her opinion of what will or should happen. We didn't start with her this time because we originally went to Cleveland to meet with our neurosurgeon, not our neurologist. We had just visited in September, I say visited because when he is healthy and doing so well that is all we really do. She was so excited to see him growing and learning and we even talked about taking him off his final medicine this spring. Needless to say she understood our concern and in her words "He has made too many gains to risk regression due to the frequency of the seizures". She said she would talk to Cleveland and was sure our team there would have no problems with her addition.

 He has almost completed a week of the companion medicine and it will take another 3-4 weeks for it to be at the right level. Do we see any improvements, no, but we would not expect to see any until the dose is where it will be long-term. The positive is we have yet to see any significant side effects with this one and usually EVERY med has some side effect with Bub, so that is good. Now, it is back to waiting and hoping that maybe trying this will help. Maybe we found the magic medicine that will work and we won't have to worry anymore. Right now, we will choose to focus on the little things...Sis's celebration of her new found skill, Bub filling a bathtub full of balls while I am doing the laundry, or a little voice hollering "Close it!" - meaning mom I am ready for bed(closing his safety bed) then walking in to the picture below...lol! 

After his bath tonight he stocked up for bedtime

As long as he is sneaky, sweet, and smiling then I guess we all should be happy too. It is the little things that we can enjoy right now while we pray the big things will go away. :)

Quality of Life

This is not the post I hoped to share and it has taken me awhile to figure out what to say in the simplest form.  Why did we ever consider disconnecting the right hemisphere of Ayden's brain? Why did we ever decide to remove his right hemisphere? Why didn't we exhaust all of the other options first???

Quality of Life

When Ayden started seizing a few months after his stroke we increased the medicines he was on to control them. When the side effects were too harsh we switched meds and found some peace with where he was. We did this to stop the seizures, and offer the best quality of life. When the seizures increased and seemed to come from nowhere we spent a great deal of time "playing with meds". We have watched him regress and make gains only to lead back to baseline. We have always done EVERYTHING we can to offer Ayden the best quality of life. We will continue to offer Ayden every chance to make gains and we will do everything in our power to avoid regression.

When we met with the neurologist yesterday he said they were ready to send us home. They were confident that they had everything they needed to confirm that Ayden is seizing again. The movements/jerks we see are sharp spikes, but he also has small spikes happening in the background. When you have done all you can do, tried so hard, and battled for this long against "S" word it is not easy to except that the seizures have returned.

So now what? We wait... 
His seizures are not life threatening, they never have been. The times when his life has been in danger have been when the HSV flared or when he has had hydrocephalus/encephalitis. Knowing that those issues are not concerns right now, we wait. Our team at Cleveland will let us know what they think we should do. While we wait, we collect data that will answer the questions of how many seizures per day and if/when we see regressions. Currently, he seizes a handful of times each day and we have seen some minimal regression in gross motor.

Perspective

Before his first Hemispherectomy, Ayden spent a greater part of the day seizing, it became such the norm that we just calmly said "It's ok Bub" and waited for them to end. I don't want to get anywhere near that point again and hopefully those days are behind us. 

That is all we know. 

On a very bright note Bubba was elated to be at school today. After being stuck in the hospital for a few days with electrodes glued to your head you would be too! :) 

Mission Accomplished

In an attempt to stay positive I will start with the positives of the day:

• No seizures were recorded last night from 9 PM on. He also did not have any episodes during that time.
• Throughout the day and night we were able to get a lot of episodes recorded for evaluation tomorrow.
• We moved to the epilepsy unit so we are much more comfortable and in a better place for the veeg.
• Bubba has been a trooper - We had a battle last night with the leads, but today he has tolerated his stats checks and he had the best blood draw I have seen in a long time! 
• We worried about the move upsetting him, but he really took it well. 
• We can find comfort in familiar faces and appreciate that even though it has been a year and half since our last visit they remember Bubba - just a lot smaller version. One nurse who was on maternity leave for his redo and revision in May/June 2012 remembered him from his shunt in 2010. (Again, as she said a smaller version but he still has the eyes.)

Yes, I know the fact that a unit of nurses as busy as they are remember us may not be a good thing, but it is comforting in some strange way. Tomorrow we hope to have an idea of what they saw or didn't see. Our goal for this admission was simply to get at least one of each of the types of episodes recorded. That means the mission is accomplished in our book. Time to head home tomorrow. Dr. Lachwani said he would call us after he takes a look at everything on Monday. the neurologist on staff suggested we stay until then, but we certainly have other plans. We have what we feel comfortable with accomplished and need to get ready for the week at home. We tried asking our doctor Friday about the what ifs and he reminded us to take it one step at a time..."So what if its NOT seizures?" is a the question left unanswered for a few days. We will get the on staff neurologist impression tomorrow, but will wait until we hear from our doctor to make a plan. The benefit is if it is an at home adjustment our cc neuro works very well with our local neurologist in Ft. Wayne so hopefully it will be a team effort.

For those of you that have seen Bubba sleep you have to laugh that it is midnight and despite being asked and moving him three times from his burrow of blankets and pillows for a the best video Bub is still sleeping like Bub, and I am going to sleep now too!

Waiting...

We met with our neurosurgeon today and he did not see anything that concerned him. Instead, he called our CC neurologist to come and meet with us. After talking with him he set up an admission today. We did not plan on staying the weekend and we shared that, but he really wanted to catch the movements now. He wants to get the episodes on video/eeg to help figure out what we are seeing and then we can figure out why. Unfortunately, the epilepsy unit is full this weekend so we are on a peds floor with a little portable unit. It reminds me of his first VEEG at Parkview years ago. Tonight wasn't bad because they didn't get him hooked up until 9pm so Bub was already exhausted and fell asleep shortly there after. Tomorrow may be rough because unlike the epilepsy unit where the camera can follow you around the room we have to pretty much have him sit in front of the cart. I am hoping he is in the mood for an iPad snuggle day...we'll see.
Positives, the shunt seems to be working properly, Ayden still seems very healthy other than the tired eyes and lack of energy.

We saw 3 episodes before he was hooked up so we hope he will "perform" for the camera tomorrow so we can get home. From there the team will hopefully offer some answers for us after they look at everything, our neurologist also recommended a follow up MRI to keep an eye on things. Thank you all again for your thoughts and prayers.

Questions and Answers

This is what we know and honestly it is not much. Many of you saw the post on Facebook about "cerebral edema". It was meant to reach out to our fellow hemi parents for advice and clarity. Thankfully, we have had two incredible mommas helping to translate and ease our frustrations a bit.  I cannot express enough how thankful we are for the extended family we have through the Hemisperectomy Foundation. It was a long evening Monday and has been a long week for us, but to explain we will go back a bit and catch up.
Ayden has been loving school and making great gains in Kindergarten, we have even dabbled in potty training! He has taken a natural interest in books and his conversational speech is coming along very well. After school he can tell me some things about his day and he has really been growing up. We are so proud of him! I haven't posted much here because we all stay pretty busy and I even contemplated ditching the blog as the months have passed because I am so bad at updating it.
I never wanted this to be a bad news blog, but when things come up writing and explaining here instead of individual conversations, texts, and messages makes life easier for us all.
Several weeks ago Ayden starting some strange behaviors, he complains about his head and ears,  he is getting angry and biting at times, and then there are some movements (seizure like) that we have tried to ignore and shrug off. He is just growing, its the weather there must be a front moving through, and all the classic ideas we hold on to when we want to ignore reality. The reality is Ayden has started seizing again sporactically for the past few months and now within the week it happens mutliple times a day. The drastic change this week along with additional sleepiness and clinginess alarmed us and put us on high alert. Monday he vomited for no appearent reason and was fine afterwards...To an outsider this sounds pretty simple childhood stuff - The kid threw up so what? Probably just didn't let his lunch settle or has a bug. Not Ayden. I worried about a shunt failure so we rushed to Parkview and called the our pediatrician, a man we have only seen 2 times in his office over the past 2 years. Truly, Bub doesn't get sick and we always wait it out over rushing anywhere with him if he does. A CT was ordered and we headed to the pediatrician and WAITED... that is pretty much what we are doing now. The CT didn't lead anyone to believe there is hydrocephalus or that the shunt was failing, but something "concerning" in his left hemisphere was found. I never so badly wanted my kid to have an ear infection, but he was clinically healthy. Because he was "healthy" we have to ask why his head is hurting and he is seizing at an increasing rate. If he were a typical epileptic child we could play with medicine; we might get his levels checked to see if it has dropped, do a blood draw to find another cause like infection, call our neurologist to see her or change something medication wise. None of that was done, because it doesn't work for Ayden. I remember the relief in the face of our neurologist when she found out we still had surgical options in 2012, because in her words the medicines have never really helped. While our pediatrician offered to admit him and do a spinal tap to rule out the HSV flaring up or meningitis, he also knew that I didn't want any of that unless it was really neccessary. He and the ID team at Cleveland decided neurosurgery needed called. We left Monday with the doctor's cell phone number and an agreement to bring him in if we changed our minds or worried.

 And so that is where we are at currently. We have an appointment in Cleveland on Friday with our neurosurgeon. We don't have any answers...We have watched a perfectly "healthy" little boy wake up just a few hours later status, lost in a constant seizure, four times in his little lifetime. Twice it has been the HSV and twice pressure on his brain. It is this fear that terrifies us and the idea of losing any part of our healthy little boy to seizures that is driving our efforts this week. Again, we don't have answers so we can't tell you anything...There is no scoop. Bub is still smiling, still laughing, still playing, and otherwise HEALTHY. So "How is he?" and "Is he feeling better?" are questions hard to answer. Prayers for answers and signs to help guide the doctors in the right direction. Afterall, our son doesn't run fevers or show clinical signs of illness even when he battles some of the worst. What makes him special his raised eyebrow, silly smirk, and his dancing that is what we plan to enjoy now while we wait. We hope to have some answers on Friday and prayers are all we can really "do" right now. Again, we appreciate the concern that people have shown. Prayers are appreciated and never taken for granted.
The Hoffmans