Friday, March 18, 2011

Speed

Remember the movie?  Where if the bus slows down it will explode?  That's my dramatization for the pace of life the past couple of weeks.  Our little clan has been flying through days and nights like we might blow up if we break pace.  In the spirit of information sharing, I'll give you the bullet points to keep this from getting too long.

-Jacks turned one!- My father in law and his partner (and a LOT of other people who pitched in) threw us a HUGE luau and it was incredible.  In. Credible.  I hope to share some pictures soon, because my description can't begin to do it justice.

-Cruisin'-  He's walking!  He also decided it was just time to take off and walk. Just like that. No second guessing or failed attempts, he just did it.  Things are about to get really interesting! 

- Sleeping through the night!-  After a year of being a bleary-eyed mama, it looks like I may finally get a little shuteye.  Midnight feedings are now by appointment only.

-Road trips, Spring Break, & a Little Time Together-  Mike is on 24 hour shifts, and we have been cramming the off days with as much as we can while Em is on Spring Break.  Because of custody schedules & work schedules, time together as a whole family is a precious commodity.  Over Spring Break we have made the most of it by acting like tourists in our own city, Hitting up Downtown, the Botanical Gardens, the Stockyards, and anything else local we can get into.  (Pics to come very soon!) We also took a day trip to LLano to see a dear friend get married, and next weekend we're all going to Austin for my run in the Capitol 10k.

The Dark Clouds-  It hasn't been all sunshine & kittens.  We met with our social worker to decipher the upcoming insurance change.  While we're stoked to HAVE it, we're also going to need to find a way to bring in at least another $10k a year to cover the cost.  Considering what the cost of CF care would be without it, that's a drop in the bucket, but it's still going to test our resourcefulness in new & exciting ways.

I also got the rejection letter from Medicaid.  They refused J coverage after the end of this month, and our private insurance doesn't start for a month after that. Apparently we now make too much money. I have serious rage and an epic rant about that statement, but it's not at all productive so let's work in the here & now. What a punch in the gut! Our social worker is a godsend, and has helped me navigate where we go from here.  We may be able to get him covered by CHIP, if we can fast forward through some of the processing time and avoid a lapse in coverage. (CHIP is a state insurance for children)  Because of J's chronic condition (I refuse to call him disabled. Sorry, not giving my kid that label), we may also be able to do a thing called Medicaid Buy In, where even though we don't qualify for traditional Medicaid anymore, it would function as a secondary insurance and help us *maybe* absorb a couple of the expenses of the private insurance.  The state of it all SUCKS.  I can't imagine what it's like for people without our resources to try to figure these things out. Someday I would like to offer a class or a hotline or something for people in this situation to help them be aware of all of their resources (word for the day, RESOURCES!) 

And finally, wee Jacks has had some skin sensitivities lately that have been a bit baffling, and a blister showed up on his thigh two days ago. In less than a day, the area became hard, hot swollen, & oozed blood tinged pus.  We cut short a day of family adventures to get him into the public health clinic.  I was worried about it being a staph infection and that just can't wait to see if it improves.  I stayed home with Em while Mike camped out for hours waiting to be seen (won't miss that aspect of Medicaid).  The pediatrician that saw him quickly dismissed it as a bug bite and sent them off with a topical and an oral antibiotic.  When we picked up all the scripts last night I recognized Clindamycin as a pretty strong antibiotic and called my mother in law (insanely thankful for MD in-laws!) to ask her all my questions.  As it turns out, I'm neither crazy nor overreacting.  Both meds are commonly used to treat staph infections, and it appears that may well be what he's got (the Ped didn't culture the site, so I can't say definitively, but it walks like a duck and quacks like a duck).  With any luck it will respond to treatment and begin to show improvement by later today and I can ease my mind. 


We've been BUSY.  There have been a lot of highs and lows.  And I'm pretty sure all of this has taken place in the space of a week. 

 

Friday, March 11, 2011

Bon Anniversaire

Happy Birthday, Baby. Happy Birthday

It's been a hell of a ride, this last year. I spent all day remembering the day you came Earthside, even flashing back to when your sister did the same. My little people. I can't wrap my mind around how meeting you has given me direction, purpose, and a sense of self I could never achieve alone.

Again and again, I am stunned and humbled at the depths of love and generosity bestowed upon us by friends, family, and strangers alike. What a life they have granted.

These days are fleeting, so we leave a record.

I've yet to grow tired of holding you while you sleep. I'm equally as proud of your growth and accomplishment as I am melancholy to say goodbye to the time as it passes.

I love you.
I love you.
Goodnight.

Wednesday, March 9, 2011

Stay of Execution

Today was yet another "hold your breath until the scale shows a number' day.

As usual I am too bent on sharing the news to give you the whole story, but I will give you a short version.

Jack wouldn't comply with my desire for him to eat a big breakfast. Some Pediasure and some bacon, and we were off to start the day. Check in in the waiting room. Wait.

Wait.


Ok, so we didn't have to wait that long. They called us back, and knowing we were headed straight to the scale, Mike started undressing him en route. Shoes, Socks, pants, t shirt that didn't want to come off of his big head. I choked on my heart while the numbers flickered back and forth and I tried to plug them in to the conversion app on my phone. (weights taken in kg, I am generally more familiar with lbs)

2 ounces.

I stifled every emotion that was threatening me at that moment and committed myself to hearing what the medical team had to say. Mike offered a family hug and I offered a surly "I don't need a hug" sneer. (I'm prickly, sorry)


The dietitian came in and asked how everyone was doing and Good Mom of Good Patient with a Good Attitude said "Good, how are you?" I showed her his food journal and we discussed the improvement in his intake, and she mentioned that he 'did gain this time'. I must have looked slightly confused, and she gave me a questioning glance. "He gained 2 ounces, is that...enough?"

And my heart stopped for just a minute when she replied:

"Six."

"He gained six ounces. His average daily gain was 13 grams this time. (up from 1.3 previously) We would like to see him at 15, but if he can maintain this rate, we won't have to go ahead with the tube."2011-03-08 09.23.15

Good Mom of a Good Patient with a Good Attitude didn't jump up and down, or squeal, or do the most ridiculous looking dance you have ever seen. (Until later)

We have been granted a one month reprieve until the next weight check, and the whole team was pleased that J FINALLY showed some upward momentum.
I personally can't articulate how this small triumph is really a big deal. We've got a ways to go, and the whole thing serves as a reminder that CF is a never-ending battle. But every inch we can take back, every bite we fight for, every intervention we can avoid, and every clear breath he draws is not taken for granted.

My phone has been insane with congratulatory calls and texts. My social media is buzzing like mad. Today I have talked to friends and family in Brazil, Canada, here in the States, England, Ireland, and Australia. I am again reminded that our the roots of our support system run deep and are strong. I am blessed, and humbled, and mindful of the gifts we have, and pledge again to go forward with love and generosity and to help anyone I may be able to.

Tuesday, March 1, 2011

Scentsy Fundraiser

imagesNot to pimp a business in a sacred place, but I wanted to let everyone know that I will be donating ALL proceeds from my Scentsy sales during the month of March to the Cystic Fibrosis Foundation through our Great Strides team, Hope for Jackson. At the end of the month, I will take a screen shot of the sales amount, and one of the donation (I make 25% of gross sales, I will donate all of that for the month of March) on our Great Strides page. If you are interested in participating, you can click the link and go to the "Hope for Jackson Fundraiser" under "Open Parties".
Click Here to go to the Scentsy Fundraiser!
Thank you!


PS I Will also be closing out the SixtyFive Roses Mineral Makeup fundraiser at the end of this month. I would like to show the initial donation deposit for this fundraiser whether I have sold out of the product or not. If you are interested in this project, click on the SixtyFiveRoses Mineral Makeup tab at the top of the blog!