Back to school and back to less sleep

So after Alvin's dental surgery it was time to start school. Alvin's sleep habits over the summer had been gradually getting worse but we figured once school started it would get better again, but they never did.

Even with school starting things just have not been getting better. It hasn't been uncommon to see him up at 3 am and not be able to go back to sleep. He then would have a full day at school with reading and math, both in his regular class and resource room. By the end of the day he came home and just melted down. Things continued to get so bad that I started to video the episodes every afternoon and evening. While we knew he could do the homework, he was so exhausted that he mentally couldn't focus and his way of dealing with it was to scream and cry.

The screaming and crying episodes gradually kept getting worse until he finally started lashing out at me. The final straw for me was the week before Elliot's birthday he hit me 5 times. That's when I knew it was time for us to discuss it with his complex care management team.

The same day we were scheduled to meet with the CCM team he actually had to miss school. The night before he didn't sleep at all and was pretty on edge. Once we arrived at the meeting with the lead pediatrician on the team and she saw the video there was no doubt left in her mind. We had been working for the past year on how to regulate things at home and nothing was really working so it was finally time to consider medication. Part of me was ready to hear this, but part of me wasn't. I never wanted to have to result to using medication to control his behavior but for all of our safety it was time.

The next week was spent by the pediatrician at Seattle Children's talking to not only our pediatrician but also a pediatric neurodevelopmental doctor. The big concern was to find the right medication that would control his out bursts and help him sleep without making him a zombie.

Finally after almost a week of waiting trazodone. Its an antidepressant drug used to regulate serotonin levels in the brain. We were told we would start out at a low dose then increase as needed to get the desired out come or so we hope.

Now its been almost 3 weeks and some days it seems to be working while others not so much. He still has his (at times violent) outbursts that are normally directed at me. We still need to give it a little more time though until we say the dose isn't working.

The other issue that we still need to look into is getting more services through the autism center. His pediatrician at Seattle Children's thinks they could be doing a lot more and we need to follow up with them and see if they have any other areas that could help him.

Other than these issues school seems to be going well. I have an IEP meeting tomorrow and parent teacher conference next week to discuss his academic progress and how he is transitioning to the new school year. The initial feedback I've gotten from his general education teacher is that he knows the schedule better than she does and always reminds her of when he is supposed to be doing something else!

Dental Surgery Update

Yesterday was the day 6 months in the making. When we last met with the oral surgeon and saw the issue we had. Alvin had 2 extra adult front 2 teeth. While having one extra tooth isn't all that rare, having 2 the way he did wasn't something she sees every day.

We got to Seattle Children's around 6:45 and got checked in. By about 7:10 we were back in a pre-op room getting ready. By getting ready I mean we were doing a lot of waiting between nurse and anesthesiologist visits. By about 7:45 we had seen the nurses and met our anesthesiologist.

getting ready to go back

On a side note one of the things I thought was quite funny this time was how many doctors and nurses I recognized. While we were waiting in our room I saw quite a few nursing assistants, nurses and anesthesiologist that I remember from past visits. Just another sign that we have been there in and through that process far too many times.

We tried to have him take a pre-medicine to help him relax before we went back but this time it back fired and he threw up all over the place.

When we finally went back he was anxious as expected. First elmo got some of the medicine, then bear and then Alvin laid down and fought a little but did  pretty good going to sleep. The anesthesiologist and nurses were all impressed that he eventually relaxed a little and didn't even cry.

When surgery was over I met with the surgeon she told me what the damage was. His first set of adult teeth were deformed and she went a head and took his baby teeth as well. The issue now is that his next set of adult teeth aren't completely formed yet. It could be another 6

months or longer before he has front teeth again! So once again we are on a watch and wait prognosis and have to follow up with his dentist in a few months to check and see how he is doing.

When I saw him in recovery he looked pretty rough. His mouth was swollen and I could see all of the stiches in his mouth. The staff in the recovery room did all they could to comfort him, but he was so upset that nothing helped. His pain was under control but he was so distraught he couldn't stop crying. Finally the nurse decided he was stable enough to go back to a room and get dressed and recover there for a while. Once in his normal clothes he felt a little better and started trying to drink some apple juice. Then he started throwing up blood which just made things worse. After about 45 minutes in recovery he finally started to keep some fluids down and we were sent home with pain medicine.

recovering after surgery.

Now at home he remains pretty swollen. His mouth looks really rough and he is supposed to be on a soft/ no chew diet. This hasn't been easy for him since all he wants to do is eat everything in site and just avoid his front teeth.

Sleeping at home with his bear after surgery

Day 2 and you can see how swollen he is.

So now we watch and wait. School starts in 2 weeks and with any luck he will be back to normal by then.

The long awaited meeting and next steps forward

A few weeks ago we finally had our 9 month long wait to meet with the Seattle Children's Autism center. This was a meeting that was talked about in October of last year when we first met with the complex care management team. The biggest fear I had with this meeting was that somehow the doctor/nurse practitioner we saw would look at Alvin's case and determine that he was not on the autism spectrum and we would begin a new fight to keep services that he gets during the school day.

First off the autism center itself is very nice. From the moment you walk in things are much different than any other doctor's offices we have visited. The lights are dimmed and the ambient noise was pretty low. All efforts are in hopes to make it a calm and inviting area for the kids. There is even a separate waiting room if needed with no noise and low light.

The meeting itself went well. We talked with a nurse practitioner for about an hour and a half going over everything from his initial diagnosis in Alabama to his eventual discovery of hydrocephalus. In the end after reviewing all the evaluations and reports he concluded that major additional testing wasn't needed. He said Alvin actually falls more on the higher functioning range of the autism spectrum and not really Asperger's at all.

The main recommendation that came out of this was for a new speech evaluation and further speech therapy. Since Alvin will be attending a mainstream 1st grade class in a few weeks it is important that he be able to communicate with his piers and teachers well.

Just this past week we met with the speech pathologist and once again Seattle Children's is on top of things. The speech pathologist was great with him and in just a few minutes discovered a motivating item for him (iPad) which helped him complete the test questions and on short breaks he got to play any game he wanted. She was very clear as to what the expectations were and he seemed to warm up quickly to her and completed the testing with no issues.

The end result was that she felt he needed a lot more assistance with his speech, which we basically already knew. He is age adjusted for speech about 3 to 3.5. He scored very well in answering what words were the opposite of others but when it came to answering questions about a story with no pictures he had a very hard time.

So the next step is to fight with our insurance to get them to cover the increased need for speech therapy. He is only allowed a certain number of visits before he has to be re-evaluated or they see no need in covering it.



Also this next week is his big oral surgery. On Wednesday we are headed back to Seattle Children's to have his baby top front 2 teeth removed and his first set of adult front teeth that are extra. They are going to do x-rays right before the procedure to be sure that is all that is going on and hopefully catch everything in one shot. We know already this is going to be a tough surgery and he will be pretty uncomfortable for a while. I've been pretty open with him about what is going on Wednesday and so far he is handling it well. I also have a good plan with the anesthesiologist to have him take a pre-medicine to relax him before he goes back to the operating room to go to sleep. This should help with his anxiety like it did last time and hopefully make it overall much easier on him to handle.

Right now we know what we are up against and have plans in place to do the best we can. From keeping his favorite bear and super hero cape close by to having plenty of scrambled eggs, pudding, yogurt and ice cream at home for his recovery I think we are as prepared as we can possibly be at this point.

One year clear

On Tuesday we had our first appointment with his neurosurgeon in a year. The plan was to first do a HASTE MRI then see his surgeon directly after. The day was written in on Alvin's calendar and he knew we would be going to Seattle Children's Hospital that day.

The HASTE MRI is exactly what it sounds like. The procedure is schedule for 15 minutes but it only took about 10 from the time we got back to go lock up our stuff until the time we were done. This was the first MRI he was ever awake for and when we got back he was nervous as we expected but handled it great.

Before we left we took bear and put his superhero cape on him. I told him that superhero bear could stay with him the whole time and protect him and that's exactly what happened.

When the technician had him get on the MRI table super bear was in hand and spent the entire minute or so in the MRI machine with him.

Afterwards we had the meeting that made us nervous. We met with his neurosurgeon Dr. Lee to find out what the results were of the scan.

First we ended up meeting with a resident and went over the big things. We talked about the increase in nose bleeds, headaches and how the seizure diagnosis had been removed. The resident then showed us the scans and the good news is that it isn't any worse and things are stable. The bad news was that the healing that we had hoped would happen during the year just hasn't happened.

Superbear Alvin being carried around Seattle Children's Hospital to protect Alvin during his appointments

Then we spoke with Dr.Lee and now considers the brain damage that occurred during the first 5 years of his life as permanent. The headaches at this point are just a part of life now. Its just a known side effect for most people dealing with hydrocephalus. The nose bleeds are something completely different and not related to the hydrocephalus luckily.

She is happy with his progress and is happy we are in the complex care management study. We were reminded of the warning signs to watch for with him such as loosing language, lethargic and vomiting and if this starts to rule things out with his pediatrician or urgent care first and then if needed they will send us to the ER for further evaluation.

So now we are back to maintenance mode. Watch for all the signs and of course try and keep him from hitting his head.

The next steps for us in the coming months are oral surgery to remove his extra set of top adult teeth and an autism evaluation this summer. The oral surgery is going to be pretty invasive and leave him with no front teeth for a while and the autism evaluation will hopefully be scheduled soon or at least that is what hope will happen.

T-ball 2013 The good, the bad and the weird

Alvin's first t-ball season is officially now over and its such a relief.

Over all I would consider the season a success for him. It started out in April which in Washington means the cold weather is still hanging around and the first few practices were quite cold. Alvin was normally the only kid in shorts (because we couldn't manage to get him to wear anything else!) and never complained about the cold.

Making sure he is in the right place

Alvin started off as awkward as ever. He was in a group of kids he didn't know and tended to not try to engage them. During warm ups instead of throwing the ball with other kids he preferred to go out to the outfield and pretend to pitch like a pro. 

The first few rounds of batting were also rough. The combination of hydrocephalus and autism make hand eye coordination really tough, so swinging a bat to hit a small ball was quite a challenge. There was one practice that I remember specifically that he missed the ball 6 or 7 times. The kids on the team started talking and snickering a little but he was determined as ever to do it.

Overtime he gradually started catching on. He started to throw, not like a major league pitcher every time but more like a normal player. When he couldn't figure out how to stop a ground ball with his glove he made up his own way with his foot.

Batting though was always fun for him during games. Every single time he walked up to the plate and did a routine to get ready just like the pros. The funny thing is when he did it all the way through he was more able to hit the ball. When the coaches stopped him from doing it then he had issues making contact.

Playing first base

The highlight of the season though was the last game. As I said due to the combination of hydro and autism hand eye coordination is rough. Well the kids had been working on hitting coach pitch balls for a couple of weeks and Alvin hadn't had much success. The last game of the season Alvin did the unexpected. On his second pitch from his coach he acts like he is going to bunt then hits it! The coach was shocked and all the kids were cheering. The next at bat the same thing happened and he was able to make contact and run to first base again. The coach later told me that once the other kids saw Alvin hit the ball every single one got a hit when they went up.

So the question now is, will we do it again? Right now, I am saying maybe. There is a lot he can learn by being around other kids his age. He is thrown into it and with very little adult help is slowly pushed to interact with other kids his age. He is still very shy and anxious but every little bit of social interaction lessons are worth it.

Team picture

End of the year party

Superheroes come in all sizes

A few weeks ago I was contacted by Robyn founder of Tiny Superheroes. Her mission is to send kids capes that are battling all kinds of different issues. The first time i saw her blog i was hooked. Reading about these kids facing so many obsticles was amazing.

She asked us if we would be involved in creating a video about the capes and about Alvin's combination of conditions and we jumped at the chance.

Below is the video profiling Robyn and the amazing influence she is having on so many families as well as telling Alvin's story in a new light.

 Robyn is also running an indiegogo account setup  to continue to help even more kids and families. Please check it out and consider helping her empower more kids through Tiny Superheroes like she did for Alvin and Elliot!

1 year later

April is Autism awareness month and yet for me this week all I can think about hydrocephalus.

One year ago this week we met with a neurologist who showed us Alvin's MRI scan and told us about the cyst in his brain. He said not to worry but we would be referred to a neurosurgeon to see if surgery was needed on the cyst or not.

Two days later we got the call from neurosurgery at Seattle Children's Hospital neurosurgery department saying that he actually had hydrocephalus and that he would probably need surgery the next day.

I remember distinctly the day we heard the words hydrocephalus. The rest of the day and night W and I spent hours  researching on line what the treatment options were and trying to get in our heads what was going on.

On 4/20/12 we met with his surgeon Dr. Lee and started on this journey. She went through the options with us and suggested an ETV (endoscopic third ventriculostomy) instead of a shunt to treat his hydrocephalus. She said he may need a shunt later in life, but with a high failure rate, if we could do the ETV and it work we would have a better overall outcome for him. The news of the surgery followed a flurry of activity of an eye exam to be sure his optic nerve wasn't compressed then signing forms and prepping for surgery.

On 4/20/13 Alvin will play in his first tee ball game. While some parents will be there and hoping that their kids make a good play or hit the ball into the outfield, our thoughts will be in a different place. We won't be concerned with the things that other parents are worried about. Instead the thoughts of how far he has come in a year will be more on our minds.

One year ago he was having major surgery to alleviate the pressure in his brain. One year ago he was in the ICU and our world had just been turned upsidedown. The last year hasn't been easy. With a site infection and numerous scares from his inability to communicate have kept us on our toes. Both W and I are constantly on the lookout for the signs that things are going wrong.

Now one year later he is playing a game he loves with normal kids. He amazes me all the time at how far he has come in the past year, but right now it hits the hardest.

The dark side

Lately I have been wanting to write about things but with the challenge of a teething baby, a normal 3 year old and dealing with all of Alvin's challenges the words have been slow to come and the decision to talk about things has been hard.

Alvin in general has been doing well. He is still catching every bug out there and his dentist issue is just odd, but then again what's new. The dentist found out that he has 2 extra front teeth that will need to be removed some time in the next couple of years and will need to be followed closely by a oral surgeon to be sure they are removed at the correct time.

What I want to talk about now though is something that I haven't really mentioned before. The quote "Will you love me even with my dark side" comes to mind in what we have been dealing with things lately.

Back sometime at the end of last year as Alvin became more verbal his outburst also became more present. These outburst are normally confined to home and normally happen when he's stressed or had a hard day.

These outburst I'm speaking of are only directed at myself and husband in the form of screaming at us, hitting or kicking. They are never directed at other kids or his sisters, but just us. He gets frustrated with something as simple as not being able to find a lego figure or Elliot taking one of his many hot wheel or just singing.

What ever the reason the outbursts are never seen as ok and he never gets away with them without some form of punishment (losing his leap pad, going to bed early, ect).

I do though however understand them. He gets so upset and angry when things don't go his way and he can't deal with the change. He knows that he is safe at home and with us so that is when he acts out.

So why am I saying this, partially because it needs to be said. This isn't a part of autism that is talked about much and it needs to be said. Alvin underneath it all is still a good kid. He loves his siblings and dog and loves to play baseball.

Alvin though has started to understand that he is different. Kids in tee ball try to talk to him, but he can't. He wants to play/interact with other kids at times but struggles to figure out exactly how to do it.

So what is next? The next step is to talk to his complex care management team about it and push to have the new autism evaluation completed as soon as possible. With the autism re-evaluation completed we can be referred to a specialist who can help us and him deal with the changes that we are beginning to face.

So while we may be encountering his dark side right now we are far from being done with the fight to help him overcome it.

IEP and extra help

So I survived another IEP with my sanity in tact! The meeting itself went pretty well. The biggest success they mentioned was that he was on track with his math skills and at or above level for all academic math concepts.

He is steadily making progress with his handwriting and coloring but still needs help to color the full areas. The team agreed that he is very aware of where his strengths and weaknesses are and since handwriting and coloring are weak he tends to do them as fast as possible and with the minimum amount required.

He is grasping all spacial concepts in 3D but has a hard time translating them to a 2D world.

He is also having issues with story time. He will sit and listen but has a hard time retelling the story or answering questions regarding what he just heard. He needs a lot of work in this and is just making slow progress. Luckily I was able to get him into a group speech therapy session one day a week that is going to work on just these major weaknesses. It will go from the beginning of April through the end of the school year and will hopefully provide just a little extra help.

The other area of concern is his social skills. If he is playing in an area and another child comes over, he will stop what he is doing and leave. Other kids typically try to interact with him but he can not carry on a conversation with them. The team recommended some more testing to quantify this gap and make sure it becomes an integral part of his IEP going forward. The team did agree that the idea of him playing tee-ball with other kids from his school is a great idea and will hopefully find a common ground to talk to other kids.

So the recommendation going forward is to transfer him schools next year for first grade. This will allow for him to be in the least restrictive environment and go back and forth to a mainstream class while getting the help he needs in other areas.

Our next meeting is scheduled for May 7th to finalize 1st grade plans. The decisions we are starting to make going forward aren't exactly easy but I know that we are in a good school district and between his teachers and myself and W we are looking out for what is best for him in the long run. The path isn't going to be the easiest but we know going forward that he will need a little pushing and help and that's fine with us.

Happy Birthday Alvin

Today Alvin turns 6.

Happy birthday Alvin. Today you turn 6 years old. Every day you manage to challenge us, make us laugh and scratch our head all at the same time.

This is what happens when I leave a stamp out!

Cuddling with his baby sister

Running the bases at Safeco Field

The past year hasn't been easy for you, but youhave come out of each issue with a smile and a great attitude.

The highlight of our Chuck-E-Cheese trip. Seeing him be able to hold himself on a moving horse.

Who says you have to sit on a swing to have fun. Playing superman is much more fun.

Cuddling with his favorite bear.

So happy birthday Alvin. We couldn't be prouder of all you have overcome in the past year or the  little man that you care becoming.

The Sibling Connection

There is always talk about the affect that having a brother or sister with autism and what affects that it has on their relationship and overall experience growing up. As Elliot and Alvin get older I am starting to understand more of what this really means.

Over the past few months I have seen the relationship between Alvin and Elliot change and grow. One thing that I expected was for Elliot to be a very good big sister to Madilyn and take on the big sister roll well. What I didn't expect is for her to begin to take on the big sister roll to Alvin.

Over the past year with all of our visits to Seattle Children's and Alvin being hospitalized twice for about a week each Elliot began to understand things. She began to understand that he isn't like other kids his age or hers. Slowly over time she became protective. As in you mess with him without her permission and you will pay dearly. When we are home she messes with him and beats him up like any good big sister.

The funny thing is when they are separated they each get a little lost. At school when the year started Alvin had some issues. He was apprehensive going into class and interacting with the other kids.

This past week Elliot went to a camp at the little gym without him and honestly just looked lost. Alvin had a rough day and we thought she could use a little time with other normal kids just to have fun. When we got there she just stood there at first just looking for another kid she might know, but overall just looking lost from not having him with her.

I honestly think though that Mac, Elliot and Madilyn will all be better people for having a sibling like Alvin. Elliot especially has seemed to learn so much about being around kids and adults with special needs and instead of shying away from people that are different she is drawn to them.

So maybe having a sibling isn't such a bad thing or burden like it is sometimes made out to be. Maybe those of us with kids with autism are actually giving their siblings something that will benefit them far beyond their childhood.

The next steps

So during our first complex care visit we mentioned that we had some concerns about his teeth. Dentist appointments have always been a nightmare and he was well overdue for a visit. They understood our concerns and referred us to a dentist that works with as a partner with the University of Washington in dentistry and only sees kids on the autism spectrum on one certain day of the week.

We had the appointment last Monday and just like last year tested our health insurance, this year our dental insurance will be tested. Turns out he has cavities in his top front 2 teeth and some of his back teeth. He has a chipped tooth and an abscess on his gums.

Once again you think all of this would have hurt and he would have shown us that something was wrong, but he didn't. He never acted painful. A while back when we were dealing with the onset of learning about him having hydrocephalus I said that I just wish he could have shown or told us he was in pain. Once again I just wish for a little bit of that communication. Because of his high pain tolerance and inability to tell us something is wrong we are left in a bad place. We can never be sure he's ok. We never know if something is wrong or hurting. As a parent this is something that hits both of us pretty hard. We are still hopeful that one day things will change but for now this is just the way it is.

So now we wait for a call from the scheduling department for oral surgery. This is going to be another major surgery for him at Seattle Children's but should just be out patient. The amount of work they need to do is staggering, but we know its for the best. Once this is taken care of we can start trying to get him back on track with his dental needs and start getting him used to the dentist again.