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.
-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.
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