Sunday, April 3, 2011

No news is good news

I know I know its been awhile, but we've been a little busy with our active little boy.  Let's back track a little...

Elliot had an appointment with Dr. O'Neill his neurosurgeon two weeks ago to re-assess his fluid filled area and hopefully get his stitches out.  Byron has become our household researcher and came to our appointment with journal articles to discuss with Dr. O'Neill and to ask questions....hahaha, our Dr. didn't know what he got himself into with us.  Before our appointment Elliot had another Quick MRI completed and then we went up to see the Doc.  He let us see the newest MRI and we compared it with his MRI from 2 weeks earlier.  Not as huge of a change as last time but still progressing at a nice rate.  Since so much of his brain sponged back so quickly in the first month of his life, now we are at a more gradual progression of sponging back from here on out...or so they suspect.  The Doc thought it was great progress and had no complaints.  His only complaint was Elliot's continued fluid-filled area around his shunt track.  It continues to ebb and flow but it just won't go away.  He told us it could be two things, (1) His shunt isn't working properly or (2) It's leaking internally due to his shunt floating around because there is not a lot of resistance between his skin, shunt and skull (it's way more technical than that, but I will spare you).  The latter would be the best option.  Dr. O'Neill is not a fan of just doing another brain surgery to find out what's happening (yea!) so we need to try a few things (kinda trial and error) to see if we can get this fluid-filled area to disappear.  The trial and error this week is to open up his shunt to its full capacity so that it can drain the most amount of fluid and also to wear a band of guaze around his head to hopefully help adhere the shunt to his skin and skull so its not floating around (we have to give some credit to Byron, since one of his journal articles he read mentioned this option and lead his in this direction).  The Doc did recommend keeping the stitches in for one more week just to make sure his incision is completely healed and there are no leaks.  Another good appointment and Byron and I couldn't have asked for a better doctor for Elliot.

Byron and I decided that when we have a good appointments we get to go to Noodles N' Company for lunch which is across the street from Children's, but a bad appointment we have to eat hospital food, haha.  So far we have eaten a lot of Noodles!

So my parents arrived last Saturday and Elliot got to meet his grandpa for the first time which was awesome and of course he loved seeing his grandma again too.  Elliot was doing a good job rockin' his guaze wrap all weekend, although he was getting quite a few looks because it looked like the poor kid had a gun shot wound to the head...so my mom the seamstress, made Elliot a few bands that are much more fashionable...and we are all about fashion.  So in our newest photos you will see Elliot wearing a band around his head and you will now know why.

We had a good visit with my parents, Byron and I even had a date night Friday, eventhough, we only were gone for an hour and a half, we were having separation anxiety, but it was great.  On Friday we had another neurosurgeon appointment down at Children's.  We finally got to give my dad a tour of Children's and the NICU and where Elliot had his surgery.  Our appointment was just a check up and to get his stitches out finally, but Dr. O'Neill stopped by as well to check on Elliot's fluid collection.  It was also nice to introduce him to my dad.  Well, he loved Elliot's fashionable band and was impressed at how great his shunt track looked.  His shunt track is finally going down and is looking great...the band is working!  He even told my mom that she should sell the bands to other families, hahaha.  He suggested he wear the band for another month and if it continues to work that means we have once again evaded another brain surgery. 

Dr. O'Neill couldn't be happier with how well Elliot is doing, since at this last appointment Byron asked him bluntly, "really how bad was his hydrocephalus?" and Dr. O'Neill so casually mentioned that Elliot's hydrocephalus was the worse he has ever seen and he is doing amazing considering the severity...I'm glad I didn't know that earlier, haha, but since his outcome has been good, I'm OK with now, hahaha.  The appointment finished up with Elliot getting his stitches out...he of course did great once again being poked and prodded.  And now we have finally seen Elliot for the first time stitch free since he was 2 days old.  He looks even more handsome than before.  Elliot will now continue to rock the band and then we will go back in a month for reassess everything.

Other things that have happened in the past couple of weeks, Elliot is weighing in at 11lbs. 5oz.'s and growing bigger everyday.  He got to meet his Gruncle (great-uncle) Skunk.  We started the process for getting Elliot a developmental evaluation to start some Early Intervention since he is "at-risk" for delays.  Elliot is beginning to smile (we haven't been able to capture it in a photo yet but we working on it).

What we have to look forward to in April...Elliot will be 2 months next week, he has his 2 month Doc appointment soon, Mommy has to go back to work, Grandma will be back to babysit for another week and Nana and Poppy Straw will be our for Easter and to babysit Elliot for 2 weeks.

Be prepared I am posting a million photos.  Some of the photos have been taken by my friend Heather with Beholding Eye photography, her photos turned out fabulous and we can't wait to get her back to take more.  Byron also has been playing around with making DVD's and he has made a video compilation of photos of Elliot to music...I cried, so now you have been warned. 






Lovin' naked time

This is what a fluid-filled shunt track looks like
Hard to tell but its really down after a week of wrapping it

Hanging with Mommy while she cooks dinner

I love it when he is wide-eyed

He scoots when he sleeps

His wrap

Rockin' his new overalls

Piggyback ride on grandpa

Nap time

Rockin' his wrap

Such a dude

Dancing

Learning to hold his toys

All eyes on grandma

Elliot's favorite position

Just too cute

He sleeps like a frog and dresses like a frog
Hanging with Daddy on the deck



Slide Show Video

5 comments:

  1. Oh, Jamie! He is PRECIOUS! So glad to hear all of the GREAT news and Elliot updates! :)

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  2. I cried! But I was warned. He looks great! You are such as good mama Jamie. Love ya!

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  3. AWESOME, AWESOME, AWESOME! oh ya - almost forgot, AWESOME!

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  4. gah!! the one of Els and Filson slays me!!
    and I love the "Gruncle" title...does that make me a "Grousin"? :)
    much love to you all, glad to hear about the progress!

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  5. Love all of the pictures!! He is doing great and looks amazing. You're right, that video made me cry.

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