Not For Nothing

People often like to remind me that pain has a purpose.  That we can't always see it in the present moment, but that one day we will look back and it will make a bit more sense.  I have a hard time jumping completely onto that bandwagon.  I've seen and experienced so much of life, watched people face things they should never have to go through, and held a little boy's hand while in excruciating pain.  No, it doesn't make sense.  And I don't think it should.  At least, not all the time.

But there are moments, albeit brief moments, where we can at times catch a glimpse of purpose in the pain.  I had one of those moments recently.

When I was pregnant with Jackson, we discovered at the 20 week ultrasound that he had a bilateral cleft lip and palate.  As you can imagine, the shock and pain of this discovery was almost more than my heart could take at that time.  But then I kicked into gear, researching and learning and gleaning as much information as I could, to try to be the best, most informed mom I could for this little boy.  My boy just got dealt a hand in life that was completely out of his control.  I researched bottles and what the best ones were for cleft babies.  When he arrived, I had every possible option available.  I researched surgeons and found one of the best in the country.  I researched.  And one of the things I found was something called NAM (nasal alveolar molding).

Even though NAM has been around for years, and the results substantial, it is still considered experimental, experimental meaning "not covered by insurance."  To have Jackson go through NAM was going to be $4000 out of pocket.  But, thanks to family and friends, over $4000 was raised to cover it, and everything over that amount was donated to Operation Smile, one of my favorite organizations.

 "Have a vision that pulls you through the pain of transformation."

NAM was rough, really rough.  We began the process right after Jackson was released from the NICU at 6 weeks old (although given his prematurity, he was considered full-term).  We began taking weekly trips down to CHLA.  While a very difficult time, I have some of the best memories of taking the train down with my mom, my Aunt Mary picking us up and taking us to CHLA, sharing lunch, and getting much needed support.

Our sweet Jackson hated it, as you can probably imagine.  And it was a hard few months while undergoing this procedure.  We watched as other parents gave up on NAM, as it was too difficult to see their child in pain.  But we held on.  Because we knew that the results would be worth it.  Not only would NAM give him a better repair, but it would (hopefully) lessen the number of surgeries he would need in the long run.  So we pushed on.  And week after week, we started to see results. 

The NAM gear came off the day of Jackson's first surgery...  May 1, 2008.  We did it.






Fast forward to Jackson's recent craniofacial team appointment...  Typically at his age, Jackson would undergo a lip and nose revision.  When we saw his craniofacial plastic surgeon, he told us that Jackson is looking great, and at this time, doesn't need this surgery.  He told us that for now, they will focus on dental work, and his next cleft surgery probably won't be until he's 7-9 years old.  Incredible.

So, today I am thankful.  Thankful that "experimental" procedures like NAM are available to kids like Jackson.  Thankful that the pain was not for nothing, one less surgery for him to endure.  And I'm thankful for this moment, the chance to glimpse a bit of purpose.

*****
Surgery Update:
Jackson was going to have to undergo three separate surgeries this summer.  We're now down to two:

June 15th:  Jackson will have a tonsillectomy, in the hopes of curing him of PFAPA.  There is a 60-80% chance of a complete cure.  If it doesn't cure him, at the very least, it is has been shown to reduce the number of fever episodes.

July 26th:  Jackson's dentist is pulling his 4 top front teeth, all of which are so far up into his gum line, they are hard to get to, one having come through his palate.  At the same time, she will do x-rays to see where his permanent teeth are so we have more of an idea of what we will be dealing with in the future.

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).

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... 

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.

4 Years Old

One of my resolutions for 2012 is to blog again about my beautiful Jackson. Wow... has he changed our lives. Every year that goes by I am amazed at the beauty I see in my firstborn son. He loves life! He loves people! He loves... And he's not ashamed to show it! (If you've ever met Jackson, you know what I'm talking about.)

I fight tears every time I think of how he entered this world... I watch the video we made for him and find myself sobbing by the end. What an amazing boy. What a gift. What a beautiful glimpse into this imperfect life that we live... but how so much beauty can be found in its imperfection.

Jackson turns 4 tomorrow. And I couldn't be more thankful for the boy that made me a mother. He has changed me. Made me better. Made me stronger. And made me open my eyes to the beauty that surrounds me every day if I just open my heart.

I love you, Jackson. Happy 4th Birthday!