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Eric Bissell

Seizures and CP

Eric had his first seizure yesterday at school. As many as half of kids with cerebral palsy (CP) have seizure disorders. I was optimistic and hoping that we would avoid this complication with Eric. So, although it’s not all that surprising, it is disappointing. I got a call from the school around noon-time that Eric had seizure activity that lasted about 3 minutes. He also turned blue and stopped breathing for several seconds; common with a seizure, but still very scary.

He was taken to UMass Worcester via ambulance where they started an IV and did a bunch of lab work. Once in the ER, Eric fell asleep, which is unusual for Eric, but again common after a seizure. The doctor also ordered a CAT scan. We ended up spending 7 hours in the ER, most of that time was just waiting to have the CAT scan. Every time Eric would get to the top of the list, a trauma case would bump him. Finally, his nurse decided to take him upstairs to in-patient radiology for the scan. All things considered, Eric was on his best behavior at the hospital, but I knew there was no way he would stay still for a CAT scan. So, they gave him Versed IV for the scan.

His labs were all normal and the CAT scan showed enlargement of the ventricular system, which is Eric’s base-line, but no other abnormalities. So the plan is to follow-up with Eric’s pediatrician and see a neurologist. He will need to have an EEG (electroencephalogram) and probably start on seizure medication. It is possible that this was an isolated episode, although I’m not getting my hopes up, since seizures are so common for kids with CP. I’ve also read that sometimes puberty can bring on seizures for kids with neurological problems who were seizure-free before puberty. So, one more diagnosis to add to the list…

We finally got out of the ER at 9pm last night. I will keep Eric home from school today and watch him. Here are a couple of camera phone photos taken at the hospital.

Worried Dad

 

Eric getting CAT scan
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Eric | cindy | | 13 Comments |   CAT scan cerebral palsy CP ER siezure UMass

Some days are diamonds…

…some days are stone.

Eric has been behaving pretty well lately, so we decided to try taking him to “High School Musical 2”, which was playing at the North Shore Music Theatre in Beverly, MA. He loves music, so this is something we thought he might like.

The show time was 7:30pm and the drive is about an hour and 20 minutes, so we left the house at 5:30 to give us plenty of time. The Mass Pike was fine, but when we got to route 95/128, it was bumper-to-bumper traffic from the Pike all the way to the North Shore. Some of the traffic was rush hour, but I think the worst of it was crazy people heading for the malls along route 128 for some last minute Christmas shopping. We didn’t get to the theatre until 8:20pm and after almost 3 hours in the van, Eric was not in a very good mood. But we also had Aaron and a friend with us, so at least we made it to the 2nd half of the show.

I had never been to this theatre before. The setup was really nice, with a stage in the center and seats all around. There were no bad seats in the house. Here’s a photo I took with my camera phone.

North Short Music Theartre

 

Oh and the traffic…

traffic

 

We came in during intermission, but as soon as the first song started, Eric started screaming and I had to take him out. We sat in the lobby until the show was over around 9:30, then stopped for a quick bite to eat and got home around 11:30pm. By the time I got the boys to bed it was after midnight on a school night. Not good.

Although things did not go very well this time, we really liked the theatre and the “Phantom of the Opera” will be there in the spring, so we might go back to see that. I might sound like a glutton for punishment, but it has always been my opinion, that the only way to get Eric used to certain activities is the keep exposing him to them. And I do think he is getting better, but times like these can be discouraging. I look around and see all the families with young children having a fine time without any of this stress and uncertainty and I’m a bit jealous. Oh well, here’s hoping for a diamond next time…

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Eric | cindy | | 2 Comments |   High School Musical North Shore Music Theatre

Winter Concert

Eric is taking chorus in high school.  I’m not quite sure how he got into this class, probably the same way he got into Spanish class in middle school.  But he enjoys Spanish and likes chorus too.

Tonight was the Winter Concert at the high school.  I worry about this type of event, because you never know how he will do.  If there is a crying baby in the audience – which there often is at these school events – that can set him off.  Eric is capable of making quite a scene… I did not take him to the first concert of the year, because he wasn’t behaving very well and I just knew it wouldn’t be good.  But recently, he has been very good (probably for Santa), plus he said he wanted to go.  So, we gave it a shot.  He did super up on stage.  He didn’t sing, but I was just happy that he was well-behaved!  He did get upset later in the evening while the band was playing, but at least all went smoothly when he was on stage.  Yes, a loud baby in the audience.

Hopefully, these events will continue to get easier for him as he gets older.  He is also getting better at handling noise. The problem is that he has a very raw nervous system due to his cerebral palsy and loud sudden noises cause an exaggerated startle reflex.  It’s nothing that he can control, but hopefully he will continue to get better at handling them.

Anyway, it was a wonderful experience for him and I got some nice photos and video, but I can’t say that it was and enjoyable evening.  I’m always on pins and needles waiting for a melt down, but always happy when all goes well.

Here is a photo of Eric with the chorus.

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Eric Family and Friends Local Community | cindy | | 1 Comment |   chorus Grafton High winter concert

Blind-sided

Parents of kids with disabilities deal with a chronic grief that never goes away. In the beginning, it is an intense grief similar to the stages following the death of a loved one, denial, anger, bargaining, depression, and eventually acceptance. We are grieving the loss of the “normal” child that might have been. But the child is still with us, so the cycle of grief never ends. Transitions in the child’s life often get the grieving cycle started again. For example, when the child starts school, has a birthday, goes to their first dance, a graduation; or worse, the child may miss out on these typical transitions.

Thankfully, the intensity of these emotions tend to fade over time and we eventually learn to cope. But the grief is always there and sometimes you just never know when it will raise it’s ugly head. Sometimes the grief can hit you when you least expect it. My life is good, my family and I are healthy and happy. I’m able to care for my boys, I’m coping well and I’m content and happy. Some people wonder how I manage to stay so positive with three children who all have special needs. For the most part I’m it that acceptance stage; after all, I’ve had 15 years to work on these issues.

Some parents of children with disabilities describe life as a roller coaster ride. Others say it’s more like bumper cars, you never know when something will sneak up on you from behind and hit you like a ton of bricks. I did feel like I was on a roller coaster when the boys were young. Things moved so fast, too fast. I could barely catch my breath. I had no control over the direction my life was heading and no way to get off the ride. But now, I think the bumper car analogy is better. You merrily drive along, minding your own business, when apparently out of nowhere, something hits you from behind. That is what happened to me today.

I was checking my morning email and I got a notice from JibJab that the new “Elf Yourself” script was out. If you’ve never heard of Elf Yourself, it’s a popular seasonal ad from OfficeMax where you can turn your family and friends into elves by sticking heads on elf bodies. It’s just silly Internet fun that I find hard to resist. This year you can make Disco Elves, and being a 70’s girl, I decided to have Rich dancing with the twins. I happily spent too much time choosing photos, cropping and fitting heads into the elf costumes. It wasn’t until I played my finished project that I got hit from behind. The overwhelming sadness of seeing Eric dancing around and looking exactly like is twin brother just made my heart sink. The boys were dancing around with their dad, just like it should have been…

So, the grieving cycle starts again. You don’t necessarily go through every stage and the emotions are in no particular order. I’m not in denial and there is no one to bargain with, so right now, I’m somewhere between anger and depression. But don’t worry; I’ll work back toward acceptance. I’m a veteran and I know this hit won’t keep me down for long!

Oh, and Happy Holidays!

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Eric Family and Friends Video | cindy | | 5 Comments |   christmas chronic grief coping disability disco elf elf yourself elves jibjab stages of grieving