Lowes Island Fennellys

Big day tomorrow!

We've been busy since we got back from Boston tearing our house apart with a couple of home improvement projects, more on that probably later.  The Boston trip went great and Sean is now enrolled in the low glycemic diet seizure study--most of you of hopefully saw Ann Marie's Caring Bridge update but in case you didn't, click on the Sean's Caring Bridge link to the left to get all the detail.

But everything is going to slow down and change significantly after today.  We'll be leaving extremely early tomorrow morning (basically in a few hours) to bring Sean down to Children's Hospital in D.C. for surgery tomorrow morning to have a feeding tube inserted into his stomach and the Nissen Funduplication procedure performed, which basically wraps the top part of his stomach around his esophagus to prevent reflux.  This is a pretty serious procedure, definitely not outpatient by any means, and Sean will be in surgery for a few hours.  Please keep him (and us) in your thoughts and prayers.  However, the doctors working on him are the best of the best and we have no doubt that things will go smoothly and he will be in very capable hands the whole time.

Ann Marie and I will be down there the bulk of the week, probably with me doing most of the over nights until he comes home.  We'll try to post updates here to let everyone know how the surgery went and how his recovery goes.  Thanks for all of your prayers and well wishes, we'll be in touch soon.

Boston Bound

We're heading to Beantown tomorrow morning to enroll Sean in the seizure study.  Be back Monday night.  Go Sox!!     

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Welcome new readers!...

...mostly family and friends, and possibly anyone else who may have stumbled upon this blog.  This is obviously a work in progress so I'll be making a lot of changes as I get better acquainted with all the various and sundry blog-y type things one can do.  I have a backlog of pictures and posts already from this summer that I hope to get up soon, as well as a ton of new things happening soon that I'll put up here as well.  So check back often and feel free to pass along the address to anyone else that might be interested in what's going on with us Lowes Island Fennellys.

On that note, you should be able to subscribe to this blog's feed by clicking the top link on the left side.  If your internet browser has a built in feed aggregator (most do), it will get added and automatically check for updates.  I think there's a way to also set up subscription by email, like we have with Sean's Caring Bridge site, but I'm still figuring that one out.  Once I do, I'll put the link for subscribing by email right below the other one.

Lastly, feel free to leave a comment on any of the posts by clicking the comments link under each post.  Write whatever you want, as much as you want.  Enjoy!

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Erin's Reading

Erin was not shy about reading in front of 168 guests at Sarah and Larry's wedding! 

More on Sean's seizure study

In case you are interested in understanding more about the LGIT (low glycemic index treatment) diet that Sean will begin, here is some info.........http://www.epilepsy.com/epilepsy/keto_news_may07?print=true#

Back home, doing better, lots to come

We're back home with Sean and he seems to be doing a lot better.  No major seizures since late Sunday night.  But there is a lot that needs to happen over the next couple of months so that we don't keep ending up back in the hospital every 3-4 months.

Sean is going in for an endoscopy (scope of the throat/esophagus/stomach) tomorrow morning at 6am at Loudoun Hospital so we can find out if anything has changed to cause his gagging and reflux to have gotten so much worse recently.  On Monday, we're talking to a GI doctor about possibly scheduling Sean to get a GI tube put in.  And at the end of this month, we're flying up to Boston to enroll Sean in the low glycemic diet seizure study to see if that will help control his seizures--we've tried just about every medication there is so now it's time to try something different.

Keep checking Sean's CaringBridge journal for updates about all of this from Ann Marie and maybe one of these days we'll just start posting everything in one place.

Back at Children's with more seizures

Sean started having seizures again last Sunday so we upped one of his meds beginning Monday.  By Friday, we decided to still go to the beach for the weekend; even though he wasn't compeltely better, we felt he was headed in the right direction with the increased Depakote.  By the time we got to Bethany Friday afternoon, he was doing great.  He had a really good Friday evening and a fantastic Saturday all day, eating everything we offered and having a fun time in the pool (I'll post pictures later).

Unfortunately, it was not to last.  Beginning Sunday morning, when he still looked great and was acting full of energy with lots of smiles and laughs, he out of nowhere launched into full convulsive seizures.  All in all, he probably had somewhere north of 25 convulsive seizures by the time the day was done.  If you want to read the whole story in more detail, check out Sean's caring bridge site here, which Ann Marie keeps updated.

I'm spending my second night tonight at Children's hospital and not sure when we'll get out.  Sean is hooked up to the EEG machine so they can monitor him overnight.  No big seizures since last night, but he's also not back to his baseline.  As of almost 10:00pm Monday night, he's still not asleep, also not a good sign.  Hopefully we'll get some good news tomorrow, more to come.

She's got the right idea

I hope nobody tells her she can't be a tractor.

At Bethany...

with Ann Marie and Sean. Erin and Ryan are home with Sarah swimming at her pool. Pics to follow....

Our girls are growing up!

This time I'm not talking about Erin or Megan, I'm talking about Erika and Sarah.  Most folks reading this will know that for the past 7 years, Ann Marie and I have been truly blessed to have the help of two incredible girls who have helped us out with Sean in every way imaginable during that time.  They both started out as hired help but both quickly became part of our extended family.   Sean seems to have that effect on a lot of people!

Erika started first when she was still a student at George Mason University and Sean was 2.  She worked full time for a few years while she completed her undergraduate and masters degrees, and has continued helping us out whenever she can, even coming straight over to our house to work in the evenings after working all day at her regular job as a teacher at a school for kids with disabilities.  Erika has always been great with our kids, so we're so happy for her that now she has one of her own!

Blake William Castillejo was born on June 15.  Mom and baby Blake are doing great and starting to get into a routine...which, according to Mom, apparently doesn't involve a lot of sleep, at least not in long stretches.

Sarah was also a student at George Mason University (Go Patriots!!) when Erika went part time and we needed more help.  Sarah was a quick learner, having never worked with special needs kids before, but now we can't imagine how we'd get along without her.  Unfortunately we'll have to, because Sarah recently got married and she and her husband Larry will be moving to Florida in August so Larry can pursue his PhD in Sociology.  All 3 of our kids were in the wedding down in the Outer Banks of North Carolina and Erin even did a reading.  Once I figure out how to upload video to this blog, I'll post video of her reading, but for now here are some pictures (click on each to see a bigger version).

 

 

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