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Monday, April 4, 2011

Oooohhh... I'm Blogging My Life Away

Here we are. In Hershey again. Seizures again. Alexander had 8 today. He currently weighs 9 lbs 4 oz. 8 seizures is a lot... but there is more to this story.

If you read the most up-to-date literature on Wolf Hirschhorn Syndrome - Like this bit from the U.S. National Library of Medicine - You can see how many of the characteristics Alexander has.  I'll highlight all that are present in my son.....

Disease characteristics. Wolf-Hirschhorn syndrome (WHS) is characterized by typical craniofacial features in infancy consisting of 'Greek warrior helmet appearance' of the nose (the broad bridge of the nose continuing to the forehead), microcephaly, high forehead with prominent glabella, ocular hypertelorism, epicanthus, highly arched eyebrows, short philtrum, downturned mouth, micrognathia, and poorly formed ears with pits/tags. All affected individuals have prenatal-onset growth deficiency followed by postnatal growth retardation and hypotonia with muscle underdevelopment. Developmental delay/intellectual disability of variable degree is present in all. Seizures occur in 50% to 100% of children with WHS. Other findings include skeletal anomalies (60%-70%), congenital heart defects (~50%), hearing loss (mostly conductive) (>40%), urinary tract malformations (25%), and structural brain abnormalities (33%).

As you can see, we hit a lot of those Characteristics.  Many websites list the seizure rate at closer to 90% and most of the literature describes uncontrollable seizures. 

When we were first told about Alexander's condition ... we were told about these Uncontrollable Seizures.  Horror stories about seizures that lasted for hours.  Skills that were lost as a consequence of seizures.  Skills that never returned because of seizures. They became my fear. My big fear.  Then we met families and realized that seizures were just part of the deal.  That the word uncontrollable was rarely used.  That most of the seizures were small and manageable.  We also found out that most kids didn't lose skills after seizures.... they were more of a blip on that radar of life.

The difference between our last seizures and the ones today was: Today's seizures were uncontrollable.  We just couldn't stop them.  5x the dose of  "emergency" medicine didn't stop them. Doctors were ready with a crash cart and were prepared to sedate Alexander to a point where is other automatic reflexes might not work: aka - breathing. I honestly am still not sure we are out of the woods. 

It is almost 1am and we have been seizure free since 5pm.  I'm still up because Hershey didn't have any private rooms on the floor he should be on for intensive monitoring.  We were originally assigned to a room with a little girl who had RSV, Bronchitis, and they believed Pneumonia.  Raymond and I complained and complained until we were allowed to move to a less intensive wing - with the promise we would stay awake and watch him all night.  So right now coffee and Pepsi and Blogging are my friends.  A way to pass the time during the mundane early morning hours. I decided I might as well tell you about my newest ideas:

I have all these various interests. I feel the urge to pursue them. In no specific order....Photography. Blogging. Anything Creative, Painting. Writing. Creating a "Special Needs Equipment Library". Creating a home for people with Special Needs.... I even found the perfect parcel of land. It comes equipped with small cottages, a large cafeteria, a swimming pool, etc. (and it sits empty!) - but it is owned by the government... so

First things first.  I'm interested in seeing how far the blogging thing can take me.   I know a lot of people who read my blog are not regular bloggers - so there are a few things you can do to help me get some genuine feedback about the blog.



1 - Follow the blog. (You have to click on the "Follow" button on the right hand side). This takes just a few minutes... but it will help me to get a gauge on how many people are really reading it.  IF I decide to focus on "growing" the audience of the blog - it would be nice to have a starting point.

2 - Comment. Even if it is a related story to what I'm blogging.  You are not taking anything away from my story - only adding layers to it.  If you are not comfortable commenting... that is totally ok - but when I'm talking about taking the blog to the next level - I'm thinking something along the lines of this (caution - there is music playing) ... but you will notice that she has over 11,000 followers and several hundred comments for each post.  (P.S. - I love her blog - but i'm going to stop reading it because I want to make sure my ideas are my own and not copies of hers captured in the back of my mind.)

If you don't know this ... I'm also a TOTAL overachiever!

Here - since you made it the whole way to the end ... How about if I show you some "oldies" but "goodies"?

Can You Name The Person in the Photo?








The First Photo is Addison... The Last Photo is Raymond (circa 1992).... All the others are Andrew.  Bet you thought some of them were Alexander, huh?  We have great genes.  I love my babies.

12 Comments:

At April 4, 2011 at 6:59 AM , OpenID joanna said...

Well, I know where Addison Got her Hair from!!! Hang in there. You have lots of people loving and praying for you!

 
At April 4, 2011 at 7:00 AM , Blogger Lauren said...

Praying for you guys. Love you so much. :)

 
At April 4, 2011 at 9:41 AM , Blogger Tammy said...

I will continue praying for your family.

As a special ed. teacher I love your idea of a home for special needs people. "The Special Needs Equipment Library" sounds very wonderful too!

 
At April 4, 2011 at 10:16 AM , Blogger Kristen said...

Joanna - Isn't that picture of Ray hillarious? It was actually at a party a few years back - they bought him that mullet. I think it is too hysterical.

Tammy - Thanks! Oh... and you wait - one or more of these ideas might just come to life. Dream BIG, right?!

Lauren - Lovin' your family of 5 right now!

 
At April 4, 2011 at 11:56 AM , Blogger n&emomma said...

This comment has been removed by the author.

 
At April 4, 2011 at 12:01 PM , Blogger nandemomma said...

Our thoughts & prayers are with all of you everyday!

 
At April 4, 2011 at 2:16 PM , Blogger Shannon said...

Praying praying praying for you guys! And I LOVE your blog! And I also love all your other ideas too! Especially photography (I hope to oneday pursue that more too) and the home for people with special needs sounds awesome! :)

 
At April 4, 2011 at 6:38 PM , Blogger Hilary said...

Thinking of you and your family! I also LOVE all of your ideas!

 
At April 4, 2011 at 10:23 PM , Blogger Kristen said...

Thanks for all the Prayers and encouragement! WE ARE HOME!!!! YAY!

 
At April 4, 2011 at 11:26 PM , Blogger Eric, Erin, Elsie and Emmy said...

Prayers and hugs!

 
At April 5, 2011 at 7:39 PM , Blogger Laura said...

SO glad you are home! I don't know if you've ever read SIngle Dad Laughing- great blog- grew from nothing to over 50,000 followers in 4 months...and in the final stages of publishing a bokk. He has just started a new blog this last week with the specific purpose of helping others make their blogs big. Here's the link if you want to check it out :) Love you!
http://willwork4followers.danoah.com/

 
At April 5, 2011 at 10:17 PM , Blogger Kristen said...

Thanks Laura - it looks awesome. I can't wait to start reading it. I've gotten so many messages / posts about the possible "place" for my dream home - I might blog an entire blog (with pictures) of my plans and designs. Maybe others can help me with ideas on how to move forward there too!

 

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