Sunday, September 19, 2010


Normally, I hate that word - no, I despise it. I TRY really hard not to use it. Nothing bothers me more than hearing "I'm so busy, I can't..." or "I was too busy to..." or "I've been so busy I haven't been able to..." Everyone's busy, no one has enough time for anything, "busy" is just an excuse for not doing something you should've, would've, or could've done but chose not to. So, I'll just say - I'm not real sure what happened to my week. I'm sorry I've not posted. This past week was our first week of my "new" (and improved) schedule. I worked a grand total of 13, yup count 'em 13 hours! Still, it seemed I was running around like a mad woman. Two trips each morning to and from school which is 15 miles away, takes a chunk out of the morning. M didn't have any doctor appointments this week, just four therapy visits. Taking care of my kids is.........hard work! They are silly and needy and so much fun!! There are a lot of little projects around here I want to get done and of course, I feel like I have to get them ALL done RIGHT NOW. Kevin keeps reminding me that everything doesn't have to happen the first day. He's right - shhhh, don't tell him that. ;) I think in time, I'll learn to adapt to this new way of life and we'll get into a groove of sorts. I've signed myself up for a YOGA class and E up for Basketball and Swimming Lessons. I plan to get M into the pool a couple of times a week to use her Waterway Babies ring.

A good portion of my free time this week was spent on the phone fighting the system once again. Back in July, we submitted prior authorizations for M's adaptive bath seat and wheelchair. The first week of August, our primary insurance approved it all at their contracted 75%. That left 25% for her Medical Assistance to cover. They have reviewed and sent back the PA's FIVE TIMES. Each time it's something completely stupid and arbitrary. Because M loses her primary coverage Sept 30th (don't get me started on that one), time is of the essence in getting this stuff ordered. Finally, fed up with they way the system "works" (or doesn't), I contacted our Senator. Long story short, a community advocate was contacted and she initiated a string of communications with the folks at MA. On Thursday she submitted a formal request to review and expedite the PA's AS SUBMITTED per Sen. Fitzerald's request. On Friday morning I received a call from our vendor stating she had all of the APPROVED PA's in her hands. So, we'll be getting M's equipment - hopefully by our Sept 30th deadline.

Currently, M has a cold. It was really bad on Friday, but seems to be getting a little better. She is schedule for surgery on Wednesday and I have my doubts that they are going to allow it to happen unless she makes a truly miraculous recovery! It has been postponed THREE times already. I guess, on the bright side, it's good to have a postponable surgery. That means that whatever needs to be done is definitely not an emergency - we like that!

E has earned a set of horns from school. I'm not sure what happened, but it's as though a switch was flipped and he became this ignoring, potty-mouthed, sassy, tongue-sticking-outing, drama queen. I know it's partially just being 4, partially the loss of his long-term teacher and the introduction of a sub, and partially the other sassy boys in his class. I don't know when it will end. I don't know if I will make it through this stage with my sanity intact. All I know is that we sound like broken records and he's getting permanent flat butt from hanging out so much in his time-out chair. Hopefully he'll remember soon that disrespect is absolutely forbidden in our family.

In very sad news, the govt. of Kyrgyzstan has allowed another precious child to die in orphanage care. This beautiful girl was matched back in 2008 with a wonderful American family. She developed hydrocephalus, which went untreated initially. She suffered irreversible damage before receiving medical intervention. Sadly, she lost her battle. As a mother to a child with very complicated hydrocephalus, this infuriates me even more. This little girl did not have to die. She did not have to suffer for two years. She SHOULD'VE been home with her family where she WOULD'VE received high-quality care RIGHT AWAY. She SHOULD and WOULD be toddling around her home right now if it weren't for politics and bureaucracy. Hopefully this angel has found peace. Hopefully there will not be more casualties as the delays drag on. Prayerfully, those who are working so hard for the orphaned children and waiting families will be able to make an impact with the powers that be and convince them to free these kids.

1 comment:

Linda Schuhmacher said...

Thanks for taking the time for an update...always enjoy & keeps me aware of what I need to pray for. I also sent up a prayer for the Precious Angel...who is no longer here....but safely in the Arms of Jesus!