I'm back

First off I apologize for being gone for so long. With the end of my pregnancy things just got crazy and I ended up just posting bits and pieces to facebook and twitter rather than sitting down to actually write.

Now that Alvin's baby sister is here and I'm back at work, things are starting to calm down  just a little. Well at least until the first of the year.

The biggest thing going on right now is our family was asked to participate in a research study at Seattle Children's Hospital. Its called the Comprehensive Care Management study. About 600 families were selected and of those half are in the control group and half are in the intervention group. We are in the intervention group and are meeting with staff once a month to meet with a pediatrician, dietitian  nurse practitioner and when needed a social worker. The first meeting we had was rough. It was 2.5 hours of meeting with each individual on the team and going over everything that has happened up until that point. From the autism/asperger's diagnosis to the more recent hydrocephalus discovery. It was draining to say the least. The staff was great but in the end it felt like everything we had ever done for him was questioned.

We met with a nutritionist, doctor and nurse for 3 months straight once a month to go over not only health issues but also his weight issues. Now that things are calming down we have a 3 month break and in that time he will be seen by a pediatric dentist who specializes in autistic kids, a neurogenetics screen and the staff is having us re-do is autism screen as well just to be sure we know the extent of his autism.

We had another scare with his seizures returning and so far the MRI's show that his ETV path is clear but the underlying cause is still unknown. I can't stress enough how great the staff at Seattle Children's has been through all of this. The doctors, nurses and all staff we have interacted with have been wonderful in accommodating him as well as the rest of the family. The staff in the research study haven't treated us like a number but as actual people that are doing the best we can with what we have been dealt.

So this next year I plan to be back. I have a lot of things I want to talk about. Some with autism and some with hydrocephalus and some with both. So I apologize for being gone for so long but my plan is in 2013 to be back in force to talk about life and issues that come from having a son that is literally one in a million.

Working with kids with special needs

In the past I have talked about working with kids at Space Camp in Huntsville AL with kids that were deaf and or blind. Out of all the groups and kids that came through in a year both W and I fell in love with these kids more than most. Sure they had challenges, but many of them had developed a sense of humor and wit about them that knew no bounds. As a counselor leading these kids through activities things were more hectic than normal and quite challenging at times.

Then there were the moments that made it all worth it. W has many stories of taking kids down in the Underwater Astronaut Trainer (UAT) in full scuba gear and watching them just light up. I personally saw kids that were deaf and or blind conquer simulators that made most kids apprehensive a the thought or site of them.

So how does any of this relate to having a son with autism and hydrocephalus? These kids were fighters and their ambition knew no bounds. These kids faced challenges early on like Alvin has. These kids all grew up knowing they were different to a degree and let nothing stop them.

In a way I feel like our interaction prepared us in a very small way for what was to come. Both W and I have had many a sobering moment over the past few months. After saying the words “incurable neurologic condition” so many times to different people and explaining that the future is anything but certain for him the weight of the situation just hits. The stares that we continue to get and his gradual realization of what is going on can be a lot to take. Some days with all of this going on the only thing we can do is remember how far he has come.

A couple of weeks ago Alvin started back in gymnastics. I had no clue what was going to happen but after seeing his favorite teacher and getting to fully participate in a class he was beaming from ear to ear. That night he had accurately and appropriately answered questions in class. At the beginning he was asked if he could have one super power what would it be and he said “flying really fast”.  During stations he scared us all when he ran up to the bar and threw himself up and stayed there locking his arms out and just grinning. We were all in shock when it happened because no one really knew what to expect. Since then he has even begun to give verbal acknowledgement to the teachers when he finishes a skill by giving a high 5 and saying “yes! I did it!”

I apologize in advance for the video quality. I was taking this outside the glass with a glare from the sun coming in.

I guess what I am getting at here is to remind not only myself, but also any others that may work with kids with any kind of special needs not to focus so much on what they can’t do but remember what they can do. If Alvin and the kids I worked with at Space Camp taught me one thing is that they do anything if given a shot. The medical professionals we work with are trained to give us the cautiously optimistic answer to everything. Its up to us to help these kids defy what they tell us in anyway possible.

Is it tough, in a word YES. Its very hard to work to find programs where the child might fit and work with staff enough to help them understand what is going on. I can’t even tell you how mnay times its just killed me seeing Alvin try and talk or play with another kid just to get rejected due to his lack of communication and social skills. The thing we have to remember though is all the stuff that we fight for now will benefit them in the end. The more we fight for acceptance and fight for them to have “normal” lives the better chance that they will grow up confident in what they can do instead of focusing on what they can't do.

What does hydrocephalus really look like?

Being an engineer I am fascinated by working through problems and finding out what is really causing them. After Alvin’s second set of MRI’s I requested a copy for personal use and was pleased that the hospital sent them to us pretty quickly and I immediately started looking at his head and putting the pictures together with everything that we had been told.

Alvin has obstructive hydrocephalus which is just what it sounds like. There is an obstruction (in his case a cyst) that is blocking the flow of spinal fluid. In his case the cyst is blocking about 80% of the space between his 3^rd and 4^th ventricle.

Arrow pointing to the cyst in question

Close up view of the cyst

Cyst sitting in the middle

This cyst from what we are told could have been there since birth but no one really knows for sure. His head circumference was always on the high side but nothing that was out of the ordinary so his pediatrician never even questioned it. He was a little late walking and crawling but nothing that raised any red flags to anyone.

So after 5 years (or so) of the cyst growing this was one of the first images that the surgeon saw of his left and right ventricles.

Initial MRI scan of his head showing the enlarged ventricles

Those large V shaped areas, yeah they shouldn’t be there. His ventricles were quite enlarged and this was why the neurosurgeon’s office got us in quickly. Looking at this picture we know 2 things, he definitely has hydrocephalus and the pressure in his brain is probably elevated. To what extent we didn’t know at the time.

As I have talked about in the past the solution we went with was an endoscopic third ventriculostomy or ETV procedure. This is a surgical option that unfortunately isn’t an option for all kids/adults with hydrocephalus. The surgeon not only has to be skilled in the procedure, but also the patient has to have the right anatomy. Also this procedure is typically the most successful in patients with obstructive hydrocephalus like him.

So after 3 months and a revision to his head due to the infection these are the results.

See he has a hole in his head now

The arrow is pointing to a tiny hole that was made during the procedure to allow for spinal fluid to drain and relieving some of the pressure in his brain. The white line that trails down from it is proof that his spinal fluid is draining like the surgeon had planned.

3 months post op and the new ventricle size.

The last thing we looked at was his overall change in ventricle size. 3 months after the initial operation the ventricles in his brain are starting to shrink. There is no guarantee that they will ever go back to a normal size, but the hope is over the next year they will continue to shrink little by little. We also know that what will be considered full recovery will take a year.

Another thing to note is due to the placement of the cyst our surgeon told us again that it is not in the plans at this point to remove it. The cyst is in a place very hard to get to and as long as it doesn’t get any bigger or change it will not be touched. The ETV allows for it to stay there while still allowing spinal fluid to drain back into his circulatory system.

So now in the mean time we go back to being as normal as possible. Granted some days that’s harder than others. I am beyond paranoid with him. Every time he acts sleepy at a time he normally isn’t, every time it looks like he is getting a headache my mind starts racing.  He always seems to come out of these and my worrying is for nothing. Until he completely learns to tell us when something is off or hurting then both W and I will continue to be paranoid.

He is at least back in gymnastics and will be starting a full day kindergarten program in the fall. Going back to the gym is a big deal for him and he is starting to pick up right where he left off. He is still the same goofy kid that speaks in lines from his favorite shows and is socially awkward, but its getting there. He is answering questions appropriately in class though which is a step forward.

At home he’s starting to engage in more imaginary play by building what he calls “American Ninja Warrior” courses out of Lego duplo blocks. He is even starting to get better fine motor skills with writing practice. This past week when we were going to practice he sat down and wrote his name with no help. Its still really rough, but at least he did it and I could tell what he was writing.

So that’s about all. I hope this post sheds some light on exactly what his condition looks like via MRI. To me its pretty interesting and while its been a scary and trying time over the last few months we are now in the management and recovery phase which we are very happy about. If anyone has questions please let me know and I will do my best to answer them.

The neurosurgery update

So here are the details from the appointment this week. 


First we had to go through having the MRI and getting Alvin sedated. It went a little better this time but it was still tough. The doctors and nurse in the radiology department assured us that as he gets older it does get better and sedation may not even be needed. He came out very sleepy again but luckily this time reacted much better than he has in the past and came out of the anesthesia with no nausea.


Once he was good and woken up we went upstair to meet with Dr. Lee his neurosurgeon. First asked about his progress so far. His overall motor skills have slowly and steadily improved. His speech is getting better and even though he is a walking book (repeating everything he hears, reads watches) he is at least talking. His surgeon pulled up both MRI scans and looked at them side by side. The scans showed that the hole placed in his 3rd ventricle is still open and working well. The cyst is still there and will not be treated. The thought is because it is in such a bad place that unless it changes in some way it will likely never be treated directly.The cyst itself is what is directly causing Alvin to have obstructive hydrocephalus. The scans also showed that his overall ventricle size has decreased. It may never go down to its normal size but as long as the drainage path stays open he should be fine. His next MRI will be scheduled one year out.

We were told he could go back to normal activities but to be cautious. We still will have to watch him like a hawk because of his inability to effectively communicate pain and overall discomfort.

So right now we have been cleared to let him go back to gymnastics. He is going into the 5-6 year old class (Good Friends) and after a few weeks if for any reason we get the sense that its too much or he is having issues with it I will drop him down to the 4-5 year old class (Giggle Worms). He has also been cleared to go back to school in September with no restrictions which is huge since he will be in all day kindergarten.

Things are finally getting better and while we are of course happy that things are stable for now I don't think that the anxiety level has completely gone down. The fear of what could go wrong will be with us for years to come but we know that we and the staff are doing everything that can be done to be sure he lives as normal life as possible.

Update from the neurologist

So just a quick update. We had our followup appointment with the neurology department of Seattle Children's Hospital this week. I thought it would be uneventful and turns out I was right. We met with the neurologist and went over all that had happened in the past few months. In the end Alvin hasn't had a single seizure since the initial surgery. The neurologist now believe that his seizures were caused by spikes in pressure in his ventricles that were putting pressure on the cyst. He believe that we are now done with his practice unless something else happens when we will be referred back.

So overall we are now officially done with the neurology department. Now the next step is Tuesday when we go back for Alvin to have a MRI and CT scan of his brain to be sure things are healing internally correctly and that there is no evidence of excess fluid collection in his ventricles. Once the scans are done we will immediately meet with the surgeon to go over the results and what our next steps are with him and the condition.

The point of understanding

There comes a point where we knew that Alvin would start to understand that he was different. Before the hydrocephalus surgeries his differences were harder to point out. He spoke a little differently and had different social interactions. His motor skills were choppy but for the most part it was hard for others, especially kids his age to tell what was going on. Most kids just thought he was funny or odd, but it never was really a factor.

Lately all that has changed. It occured to me during this hospital stay that Alvin  is starting to understand that he is different and that the hospital is now going to be part of his life.

This all started when we were in the playroom. There was a doctor's table with commonly used items such as a thermometer, pulse oxygen monitor, and stethoscope. While we were in the play room Alvin had a lot of fun showing me how these were all used telling me things about them. While I was impressed with his understanding it was also hard to take.

During the stay last week, from the first clinic visit all the way through discharge Alvin showed me that he does understand what is going on. He knows something is wrong with his head. He knows that the doctors are there to help but they do things that hurt sometimes and it can be scary.

When we got home I basically forgot about some of it until Sunday when we went to a local playground to get some much needed outside time.During our time there I noticed something very specific. When Alvin was playing with the other kids and his baseball cap was on covering his incision he was treated as normal as ever. He at one point took his hat off and went back to playing. The same kids that were just playing with him saw his head and made comments and ran away. These exact same kids started treating him like there was something wrong with him. Alvin noticed this and once again did something that I admire. He calmly came to me and said he wanted to go home so I got Elliot and we headed home.

Once again that was a kick in the gut. I see him deal with it so well, but later the emotional meltdown came out. He asked to be held and carried. He asked me to not let go.

Alvin knows that he is different now not just because of his mannerisms but because of the large "C' on his head. He knows at home he is treated just like Elliot, but for some reason the other kids don't see him the same way. They see him as odd or gross and avoid him which is so different because at home Elliot seeks him out and could care less that he acts weird or has stuff on his head.

We are struggling with this as a whole. So far the only thing we can do right now is tell him that some kids are just mean and don't understand. His family understands him and right now that's all that matters. Right now all we can do is just work through it with him. He really is handling it all very well for his age and we have been so proud of him. He is starting to better understand his conditions though which at times can be heartbreaking. We had hoped he could stay blissfully less aware for a while longer but the day has come and now all we can do is support him through it.

The infection update

So the last time I did a full update was Tuesday night after surgery. Wednesday morning we had a visit from the surgical team and his incision looked good. It was still red and swollen which was to be expected but otherwise fine. He was still lethargic and had no want to do with taking any sips of a clear liquid. He basica;;y slept most of the morning until W and Elliot got there. I then took Elliot to go pick up my laptop charger at work and get us lunch while he stayed with Alvin. When I got back we had lunch and even though Alvin asked for a bite, when you actually offered him a drink he said no.

We found out that due to the large amount of antibiotics and fluids he was on that they were decreasing his appetite and keeping him pretty lethargic.

Then things got interesting. We met with a doctor from the infectious disease. They said nothing had started growing in the cultures but they just weren't sure it was even bacteria.So after some more questions I showed him the pictures of what it had looked like the days before we brought him into the clinic and then in the clinic when they started cleaning it off. He was actually pretty amazed that I took them and asked for them to be emailed to him so he could study what things looked like before they cleaned it out in the OR. Later that night the team from Children's as well as the doctor we spoke with from UW came back to go over things further. This is where things got interesting. They told us they now suspected that the infection was not viral but in fact fungal! They were going to talk to the neurosurgeon to get a better idea of what they saw in the operating room. The surgery team (yes now it is more than just his surgeon and her resident) stopped by later and discuss what they saw. They weren't convinced it was bacteria but said it was ultimately up to the infectious disease team to decide the final treatment plan for the antibiotics.

Luckily that night he slept well and on Thursday morning was starting to feel a little better. The nursing staff suggested turning down his IV and seeing if that would help him want to eat and drink a little. Well it certainly worked and before long he was eating jello and starting to drink very slowly. The surgeon even came in during rounds and said they could just disconnet the IV entirely since he hadn't thrown up again. The rest of the day he slowly started eating and drinking and driving us nuts as his energy returned.

Later that night he was feeling so good we even made a trip to the larger playroom to help release some of his energy. By the time we spent about an hour and a half there we also met with his infectious disease doctor and his surgeon one more time. His surgeon wants him to go home tomorrow and thinks his head looks really good. She does want the nursing staff or a nurse practicioner to give it a good saline wash just to get all the dried blood off and one last good cleaning. His infectious disease doctor believes that the infection was actually a combination of a fungal and bacterial infection. Luckily it was all superficial so just a course of oral antibiotics is probably all that we will have to do at home. Well that and a followup incision check in 2 weeks, but that was to be expected.

As long as the infectious disease stuff comes back fine we are out of here tomorrow and I'm not sure who is happier, us or Alvin!

In some ways its like starting all over. After 7 weeks we are going to be sent home with the same care instructions and he will have the same physical restrictions. While it is really frustrating at least we have it under control now. We now know that he has an issue with the super glue they use. He no longer has any hardware in his head and it will not be replaced. He is as back to normal as he was 7 weeks ago and now maybe we can avoid any more emergency trips to the hospital for at least a few more months!!