What I've been up to lately...

Troubleshooting my son's shunt. For those of you that don't read his Caringbridge updates (link found to the right in drop down menu) we've been noticing a lot of symptoms that were worrisome. After a series of xrays was taken, the verdict is: It's probably broken! We've been working out the details with his Neurosurgeon in Chicago. For now, we continue to manage his symptoms and will fly to Chicago soon for them to assess the situation and possibly do a shunt repair.

Attending the ASAP Conference in Wisconsin. Yep that's right. I got away from my 4 children (5 if you could the hubby lol) and spent a few days knee deep in medical information regarding my son's condition. My brain litteraly hurt each and every day. There was just sooooooo much to take in. While I enjoyed getting away, and I learned a lot, it wasn't without drawbacks. By Saturday night I was at a major low. Listening as some of the Country's top Neurosurgeons spoke of the debilitating condition my 11 yr old suffers.

Hearing that only 4-5% of patients come to develop Pseudotumor Cerebri (as my son did...such odds!!) was hard to swallow.
I listened as they told us that the long term outlook for these kids is not yet known, but that Spinal Cord Function seems to deteriorate sooner and Spinal Cord Fatigue set's in. These words could someday be my son's reality. Especially as I looked around at many of the Adult Patients attending the conference. Many with fused spinal cords, wheelchairs, walkers and service dogs. That provided WAAAYYY to much reality for me for awhile. At that point, I was ready to come home!! I missed my kids and wanted to be with my family.

I arrived home late Monday night and had to get up bright and early Tuesday as my 9 yr old was having his tonsils and adenoids out. Earlier this summer he had a sleep study done to evaluate his crazy sleep terrors in which he get's up and runs around like a MAD MAN. He had circles under his eyes and would fall asleep frequently throughout the day. He was clearly not getting enough sleep. Results of the sleep study came back to show he was suffering from Sleep Apnea and Hypoxia. While he doesn't snore or have large tonsils, it was decided they must come out! Hopefully that resolves the Apnea. I fear something else is causing the Apnea, but I refuse to go into details until I have to. Anyway, the surgery went well and he's resting quite uncomfortable on the couch at the moment. Keep your fingers crossed that this solves the sleep issue.

*SIGH* So that's why I've been on the quiet side here on the blog.
I promise, I will update again soon...

How would you like to win a trip to Lolapalloza in Chicago?
Or be in New York on New Years Eve?
Maybe even win a trip to the Winter X Games in Aspen!

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I would LOVE, LOVE, LOVE to win the trip to NY. I've always watched on TV, the clock strike 12 as the ginormous ball begins to drop. Plus, included in the trip are the following:

  • Round Trip Air Fare for 2 from Major Gateway Airport
  • Ground Transport to and from the Hotel
  • Luxurious Hotel for 3 nights
  • Helicopter Ride for 2 over New York
Seriously...a HELICOPTER RIDE over New York! Um, yeah I could handle that. It would be the perfect getaway trip for hubby and I. I could just see us now, relaxing in our luxurious hotel, sipping Champagne pretending we don't have 4 rambunctious children awaiting us at home. Children! What children??? Hahahaha Living it up for 4 days and 3 nights just the two of us. While there we could see a Broadway show, something that's been towards the top of my "to do" list for quite some time. We'd also be sure and stop by ground zero, and see where the World Trade Center used to stand. Of course, I'd have to try me some New York style Pizza. I'm a pretty big fan of Chicago Style so we'll see which one I like better.

Mmmmmm, doesn't that all sound awesome?!

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...a thing of the past?

It's about time for an update on the thumb sucking issue.

For a little while, the Thumb*Guard worked like magic. Princess let it be and as long as the guard was on, she wouldn't suck on her thumb.

After about 2 weeks she decided she didn't care about the Guard and we'd catch her holding onto her blanket tag with her thumb placed loosely in her mouth. The guard prevents the child from forming a suction around the thumb, but that didn't keep her from mouthing the sucking motion. We decided at that time the beloved blanket was standing in the way of breaking this habit and it was time to:

A. Get rid of the blankies!

~or~

B. Cut the tags off!

It wasn't a hard decision because I was traumatized as a child when my mom got rid of my blanket before I was ready. So.... off to the kitchen I went one morning and snipped the tags off when she wasn't looking. Of course, she was horrified when she discovered the tags on her blankies were gone!! I played dumb and she quickly recovered (within minutes) and I haven't heard a peep since.

It's been about 2 weeks since I cut off the tags and I'm almost ready to declare the thumb sucking habit a thing of the past!!

I'm sure you're wondering... ALMOST? So I'll explain, every once and awhile we'll go in the middle of the night and find that she has her thumb in her mouth (again, there's no suction, it's just kind of sitting in there and her tongue will be moving as if she were sucking on it) which tells us subconsciously she still has a bit of the habit left. We will press on and continue to use the Guard at night, if we need to. As far as daytime is concerned, she's been without the Thumb*Guard for 4 days now and hasn't even tried to suck on her thumb. Not even once.

Whooohoo! I highly recommend the little plastic apparatus for thumb and finger suckers (did I mention they have a Finger*Guard too didn't I?) everywhere!

I give it 4 Stars (...and NO I'm not being paid to say that. This is an independent product review and I am in no way being compensated. Just sayin'. )

The only reason it doesn't get 5 stars is because the clear plastic has stained from regular everyday use over the last 5 weeks. I haven't found anything to get it to clear again. It's kind of a turn off because it appears dirty no matter how clean it actually is. I guess that may be kind of a silly reason to take away a star, but I'm kind of snob like that though. ;-)

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