Oh Happy (Mon)day!

Madi is my superhero :)

Today I called United Seating and Mobility, which is where we ordered Madi's walker and wheelchair, and they said both are ready! We get to go pick them up on Monday! Woooo hooooo!!! I guess they were actually ready yesterday, so I'm not exactly sure why no one called me (especially since I've been calling and leaving messages) but I'm too excited to care. I'm also not sure why they said the walker has been ready but they were holding it until the wheelchair was ready, when they knew I was waiting for the walker to come in and said I wanted to pick it up as soon as it was ready, even if it was at a different time than the wheelchair. Oh well, like I said, none of that really matters any more. Tami is going to come with us and we are going to see about possibly getting Madi a set of arm crutches while we are there. Madi really doesn't want to use her walker, but also doesn't have enough balance to walk without it. We are thinking arm crutches might be a good solution. She said they have ones that you hold on to but that also go on your forearm so that you do not have to put them down when you stop to get something or work on something. I'm worried it will take them months again to get all of the insurance approvals and such, so I'm wondering if I should just put them on my credit card and let them reimburse me when insurance pays. Or I could temporarily take the money out of Madi's Amazon Associates account, then reimburse that when they reimburse me.

Madi has been practicing on the wheelchair we borrowed from the spina bifida association and has really been loving it. She gets to play with things and get in to things she couldn't on her own. She gets to see everything at a new level, and she also gets more independence, which is great! I'll update with pictures and videos when we have it!

And we have caths!

Woo hoo, finally!  I never thought we'd get SO excited about catheders!  At $1 a cath, and 4 caths a day, well, let's just say we were really praying all of the insurance stuff would get worked out so it was not out of pocket.  God is good, caths are here, and Miss Madi (and her very handsome brother, of course) is doing amazing!  What more could you want (ok, ok, I admit I DO want the wheel chair, bath chair, and walker we ordered over 4 months ago, but I'll take the caths for now ;))?

Madi "nursing" her baby

I feel a little better....

With everything going on therapy-wise (Madi having 3 a week and Conner 2), I was feeling that it was time to drop Madi's Developmental Specialist.  Every time she comes, I feel like we are wasting insurance money, because she does what I do with Madi all day every day.  Because my background is in education and I've had MANY early childhood development classes, I feel like I'm pretty on the ball with that kind of thing.  It's also hard because she does not involve Conner and it's always a struggle to try and keep him distracted.  She does not like him touching or playing with her toys, and, of course, that's all Conner wants to do.  She has made him cry by being hard on him.  Our philosophy is that therapy is a family affair.  We feel if we are all involved, then we all know how to help Madi best.  Conner sees them work with her, and though he is little, he learns from that.  Now, sometimes he can get in the way, and then I have to jump in, but the other therapists are great at involving him.  She also cancels last minute more often then I think is appropriate, takes lots of weeks off, and answers her phone frequently in the middle of sessions, which I feel is unprofessional (we aren't talking the occasional call because it's important).  Last Thursday was the icing on the cake, though, when she told me I should think about weaning Madi because she has teeth and is teething.  It's not the first time she said it, and it's also none of her business.  I am doing nothing harmful.  Actually, in Madi's case, I feel extended nursing is extremely important.  My milk provides her with antibodies and white blood cells to help her fight of illness, gives her pre and probiotics to help keep her gut happy, keeps her regular without needing another medication, keeps her hydrated, and I could go on and on. I know nursing a 1 1/2 year old is controversial to some people, and I know she did not nurse her babies, but I felt she was out of line.  I asked the other therapists what they thought, because I know I get a little passionate, and they agreed it was completely out of line.  Her job is not to provide medical advice.  She's not a doctor.  I made the call to Ruthanne, her DDD coordinator, and let her know we were done.  I was ready with all of my reasons and rebuttals, and was quite shocked to hear "Yeah, I was surprised you didn't stop it sooner.  You are the most qualified mother I know.  I totally agree with you."  So that's that!  I feel like a load has been lifted from my shoulders.  We are still keeping Physical and Occupational therapy, of course, but life just seems more manageable now, and that's a good feeling!

Painting her birdhouse.  Look at her new little crocks, they are so cute!!

I may need an attitude adjustment

Lately I haven't been in the best frame of mind. I am so frustrated with the system and all I want to do is scream and throw something against the wall (though I've yet to do either, so no worries). I previously posted about some money that was supposed to be reimbursed to us that will go toward a playground for Madi. After another round of calls and messages, and no answers or replies of course, Tami put me in touch with someone who advocates for families and helps resolve problems they are having. I finally found out that the paperwork I resubmitted must be lost in the mail because they are still not showing they got it. I am not sure why they could not just tell me that, but at least I finally know. So today I spent about 1 hour getting everything in order again to once again resubmit it. I did not get to finish and could not sleep until it was done and I could once again see the office floor, so I spent another hour and a half or so copying, compiling, organizing, and writing letters. This, of course, is not the only issue we are having. We still do not have her walker, which came in over a month ago and we should already have, but they are having a hard time getting authorization from her secondary insurance. We do not have her wheelchair or bath chair either. I have left multiple messages to see where these items are and when we should expect to get them, and no one has returned my calls. I was dealing with trying to get Conner in speech therapy which meant calling the doctor to get the referrals in the right place, talking to companies, and trying to figure out the cheapest way to get him a hearing test (which involved calls to the hospital, a few offices, and insurance). Then there is Madi's catheters. Don't get me started on that one. Apparently the company we were going through (edgepark) does not take her secondary insurance, only her primary. We found that one out after a lovely bill over $160 for a month worth of caths. The place her secondary referred me to only takes her secondary, not her primary, and the place that company referred me to only takes her primary. Confused yet? So am I. So with one box of caths left, I still have 0 places to get the caths from. I've called her primary insurance, her secondary insurance, and her urologists office, and no one seems to know where we can go. Nice. Then there is the neurosurgeon appointment I've been trying to make for a little over a month. There is always something else they need, someone else they need to talk to, someone else I have to call. Madi is due for a shunt series and CAT scan, but because her neurosurgeon changed offices, we have to start from scratch and it's taking forever. Then you throw in to the mix that Conner just started preschool 2 days a week, which I volunteer at least 2-3 times a month, I started homeschooling the kiddos the other 3 days (nothing big but it still requires prepping and planning), Madi is in therapy 3 times a week, Conner finally got tested to see if he qualifies for speech therapy (he does) and will now be going twice a week, and everything else that goes along with life. Needless to say, having to spend my Friday night dealing with insurance was the icing on the cake.

I am grateful we are getting the refund for part of the medical bills that we paid early this year. When we paid those bills, we were not expecting to get reimbursed. I am thankful they backdated her secondary insurance so these bills would be covered.  I still find myself getting very frustrated, though.  Madi is such an amazing blessing and makes it all worth while, but I really wish all of this extra 'fun' stuff would just disappear. I don't think it's fair that families have to deal with so much junk when they have so much else to do and think about. I know seeing Madi and Conner play on a playground, together, because it fits both their needs, will make it all worth while. I know the freedom and thrill Madi gets from being able to play independently with the other kids, high up in the air where she normally cannot get, will make me forget this mess in a second. I know all of this, but I still wish I got to spend my time on other things. I'd like to use that pedicure gift certificate David got me for Christmas in 2008 and I'd like to use the cooking class giftcard he got me too. I would like to wake up refreshed in the morning. I would like to spend my time with my family, instead of on the phone. It is times like these, though, that I remind myself that God tells us his presence is with us and He will give us rest.  I know it will all work out in the end and it will be worth the hassle.  When I look at Madi's sweet face I remind myself of all I have to be thankful for. Taking care of insurance may not be fun, but it is part of taking care of Madi, and I still would not trade it for the world.