Friday, April 27, 2012

World Give Day - Team Jackson

GiveForward is running a contest in honor of World Give Day for the video with the most views now through May 4th. GiveForward donates $250 to the fundraiser with the most views and then promotes the video for the following week!

We would love it if you would take a moment to watch the video my sister created and pass it on to your friends! Thank you for all your help and support of Jackson. We are beyond grateful and humbled by your love for him (and us).

Thursday, April 19, 2012

Sleep Study

Jackson had his first sleep study last night at Dell Children's Hospital.  We booked this study a few months ago, not knowing at the time that Daniel would need to be in California for work.  Whaddya gonna do...

Jackson, in addition to SGBS, was more recently diagnosed with a periodic fever syndrome (PFAPA).  (Yes, I often wish life would cut him a break!)  Ever since he was one, Jackson has been getting fevers every 2-6 weeks.  At first, we thought he was just constantly getting sick.  But every time, he would have no other symptoms, other than high fever and occasional aches in his legs.  Sometimes his fevers would get really high.  We took him to the ER when Cash was just two weeks old because his fever hit 107.  And last year, while visiting family in California, Jackson's fever spiked so quickly, he had a febrile seizure.  Scary, to say the least.  His doctors ran every test on him, checking for flu, bacterial infections, etc.  Everything came back negative.  Every.  Time. 

Needless to say, I started researching.  And what I found surprised me!  There are such things as fever syndromes?!  I would never have known.  This article explains about more about PFAPA.  I was certain this is what Jackson had.  So, I contacted the local infectious disease department located near us at Specially for Children, next to Dell Children's, and scheduled an appointment.   Since then, we've run a number of tests, the final one just last week, all confirming this PFAPA diagnosis.

Treatment options for PFAPA vary.  Oftentimes, a single dose of steroids can shorten, or end, the episode.  But the next attack can occur much more quickly than normal.  Another option is a T&A (tonsillectomy and adenoidectomy).  This has been proven to cure 60-80% of patients with PFAPA.

His ENT has also been concerned about his very large tonsils, as well as the fact that he has snored (often very loudly) since he was an infant.   The nice thing about that was that I never had to guess if he was breathing...  :)  I can, even now, stand outside his door and breathe a sigh of relief, knowing he's still alive. 

Back to the sleep study.  His ENT requested this study be done to have more information about his sleep patterns, and if his snoring is indicative of any other sleep issues.  He also wanted this done prior to removing his tonsils.  One more piece in the puzzle...

So we arrived at Dell at 7:30pm last night and the set-up process began.  Wires, wires and more wires.  It took a long time...  Around 9pm, Jackson began to doze, even though the nurse wasn't done setting everything up.  I helped her move him around while he slept so she could finish the process.  He woke up a few times during the night, trying to get the device out of his nose.  I don't blame him.  Honestly, I'm not sure how he slept at all with all those gadgets on him.

The nurse woke him up at 6:20am to get disconnected.  Afterward, he asked me if he was done being a robot for the night...  How I love this boy.  Pulls at my heartstrings.  Now, we await the results...

P.S.  Thanks MeMe for watching this guy... 

Tuesday, April 17, 2012

How Time Changes Things

This boy amazes me... We just got back from his quarterly ultrasound, where they screen him for kidney tumors. I remember when we first started getting these tests done... he would scream and scream the entire time. I would dread it for days before the appointment.

Fast forward 3 years... He's now 4 and he proves that to me. While driving to the office, he asks, "Do I have to get poked today?" To which I responded, "Nope. Not today, buddy. Today she's just going to look at your tummy, but remember? It doesn't hurt." "Oh yay! No pokes! Ok, mama."

We head into the waiting room, and he plays quietly while I fill out paperwork, with Cash sitting in the stroller next to me. JJ calls his name. He jumps up and says, "Hi!" She tells him how much he's grown since she saw him last, remarking at how 4 months couldn't have already passed, and that he must've grown a foot in that time. He has gotten tall. Outgrown all his old clothes, now in 5T jeans and moved up into the boys XS. How is it possible that my once tiny boy is growing out of toddler sizes?!

We all head back and Jackson follows her into the room, gets up onto the table, lies down, and lifts up his shirt for her to "put the goopy stuff" onto his tummy. He laughs. And proceeds to talk about the fish in the wall mural.

JJ: "Okay, could you turn onto your side, Jackson?"
Jackson: "Sure! Wow, what's that fish? It's kind of scary looking. I like the puffer fish."
JJ: "Now, onto your back..."

He follows her instructions like a pro. I stand there in amazement.
JJ: "All done, Jackson!"
Jackson: "Done? Oh, okay. I'm done, mama."
Me: "Yep, you're done, sunshine."
Jackson: "Can I get a treat now?"
He hasn't eaten in 6 hours. JJ gets him two CARS stickers, a lollipop, and says, "We'll see you next time!"

At the end of the day, while eating his favorite mac n cheese, he says to me, "It was a good day, huh, mama?"

Yeah, buddy, it was a good day.