Monthly Archives: June 2012

Blue Cross… you still stink, or as Henry says…ewwwww!

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I called BCBS the other day wondering the status of my appeal. He said it was processed and mailed, but he couldn’t tell me the decision. Considering the next day I got a big fat envelope saying “NO”, “NOPE”, “DENIED”, I’m not surprised he didn’t share the decision with me.  (there were probably also notes on my file to fear for your life if you cross me or my son, because I will be your worse nightmare :D )

I really, really thought based on the appeal letter I wrote and the supporting letters from the neuro and SLP that we would win. I also thought they couldn’t deny his cute little face considering I included a photo of him too! Cold, cold hearts over there at Blue Cross. It was kind of like waiting for a college acceptance letter. When it was so big and fat I momentarily got excited…then I thought, wait, what could be in there? Why of course! It’s pages and pages of complicated information in nonsensical language about how if I don’t agree with them I need to take it up with New York because they are over it, and me, and I need to get a lawyer to understand it all.

I called the neuro’s office and they agreed to write another letter on our behalf including Henry’s new diagnosis, and I’m hoping the genetic anomaly card will win us this hand. Who knows. It will take another month minimum to get it figured out. Meanwhile Henry is getting maybe 2 speech sessions a month and the pressure is on to practice more at home. The fear of regression is looming.

Casana Conference – Boston

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So the National Conference on Childhood Apraxia of Speech is coming up in Boston in a few weeks. Last year when it was in San Diego, it was all I could do to not charge up my credit cards and hop on a plane and go. Now it’s so close-by so as soon as I found out it was in Boston, I just assumed my husband and I would be there.

Now we are wavering for a few reasons, the main one being financial. We are currently without insurance coverage for Henry’s therapy and it’s $220 a session…two times a week. Already we can’t afford it. The CASANA conference is $275 per person not including hotel, gas, etc. Side note: Is it just me or do any of you now look at prices in terms of how many speech sessions it would cover. For example, a much needed vacation? Well, that would be like 10 therapy sessions! A new tv to replace our half dead one, 3 or more therapy sessions. You get the idea. Oy.

Anyhow, the money thing is tough. I’ve been trying to weigh the cost vs. benefit for a while now. I’ve been studying the seminars at the conference and the speakers trying to figure out if we could get enough out of it to warrant the financial strain. Henry is coming along nicely in his speech and we aren’t new to this diagnosis, so some of the sessions wouldn’t be as useful for us at this point. I am, however, really interested in the ones regarding learning in school, reading, socialization, and neurological factors.

Right now, if you asked me today, I’d have to say that regretfully I’m not attending. But there is this teeny tiny voice in my head that is nagging me to go. If it happens it will be a last minute decision. If anyone else out there is going, I’d love to hear what you think

taking care of me

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Are there any other moms or dads out there that are consistently putting themselves last? I’ve noticed since having Henry over three years ago that like any parent I have less and less time for myself, but I’ve also stopped taking good care of myself in general.

Henry was a challenging baby. He rarely slept more than an hour straight until he was about eight months old. He suffered from severe reflux and food allergies and until we had that figured out he was uncomfortable most of the time. He cried… a lot. I slept very little, I was on an elimination diet so I could breast feed him allergen free (so I was hungry all the time) and I think I was running on pure adrenaline… and crazy love for my little guy.

It’s amazing how quickly time passes. I always would say to myself, “once we get this under control I’m going to start working out”, or “after the holidays I’m going to get that manicure I received a gift card for”, “I’m going to find time to hang out with my friends…eat right” etc etc etc. You get the idea. Well, my manicure gift card has since expired, so that tells you how I’m doing!

It’s natural and necessary to put your little ones first, and I would do anything for Henry. What I am learning, however, is that saying to yourself that you are going to do something for yourself down the road, when you go over a hurdle or reach some sort of milestone, is really just a very complicated form of procrastination. In our situation, every time we seemed to get a handle on some condition of Henry’s (like reflux) another one popped up (like apraxia) and another (like hypotonia and sensory processing dysfunction). I really felt in these last months though that I could see the light at the end of the tunnel on this road called apraxia. We are beating it!  And during that brief respite from the intensity of advocation, research, therapy and overall worry, I took a good look at myself. Aside from my parenting abilities I wasn’t really liking what I was seeing. I looked about five years older, have gained over twenty pounds in the last two years, and it looks like I haven’t slept in as long as it took me to gain that weight. Aside from Henry I have been finding joy in very little. This is a big problem. There are some changes that need to happen that are obvious…like exercising, getting better sleep and taking time for myself. Other changes are ones where the answers don’t come so easily. I was really working on figuring this all out when another bomb was dropped in our laps.

Henry’s seizures and recent diagnosis of a brain tumor/cortical dysplasia and epilepsy have hit me harder than anything else thus far. Mentally I am at a really low point even though I know things could be so much worse. I have been unable to motivate myself to start exercising or going out and having fun and all of the other things I know would make me happier and a better mom. I feel like a deer in headlights, frozen and unable to clearly think what my next step should be. I don’t really feel like I have the time or the luxury to be in this “mood”. I need to get my shit together, pardon my french. I spend half my time with Henry marveling at his amazing personality, progress and overall cuteness, soaking up every drop of him. I spend the other half wondering if what I’m seeing his truly him or a by product of his “tumor”, is he slurring, is he sick, is he about to have a seizure, is his tumor growing right now…when is the other shoe going to drop? I can’t live this way. The uncertainty and enormity of everything is overwhelming me.

So how do I, amongst all of this, find the time to take care of myself too? How to I motivate to do all of these things I should be doing for me? It feels selfish somehow, yet necessary for my sanity. I just can’t seem to take the first step.

oh Blue Cross, how I hate you!

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I think I use more of my cell minutes on the phone with Blue Cross than I do with my friends, and I’m over it. I’m angry. It’s ridiculous.

I have had issues with them in the past regarding Henry’s coverage for therapy. I have made appeals and thankfully won. I was gearing up as we approached the cap of our 45 visits per year that were allotted, and assumed that was the next battle on my hands. I was preparing.

I was not expecting full denial of coverage for him based on the fact that he is now attending preschool. I have heard of this happening, foolishly I didn’t think it would happen to us. I had already fully explained the necessity of one on one intense and consistent private therapy for Henry…and I seemed to convince them. Now their view is that the school should be responsible for all of his therapy moving forward. We have a lovely and well respected speech therapist at his school, but he has a great connection with our private SLP and has made such progress with her and I don’t want to lose momentum. Why would we change something that is working? Why is it so hard to get our kids what they need? It makes me nuts.

I contacted BCBS again to go through the details of the appeal process and then I contacted CASANA for some guidance in drafting a letter. They were kind enough to share a sample appeal for a similar situation and I modified it for our case specifically. I got amazing letters from our SLP and neurologist  to support the appeal and I included the cutest picture of Henry I could find. Now we are waiting fingers crossed.

ps. I have another letter to BCBS stating how I really feel, holding nothing back. It was never sent of course, it’s something that is drafted only in my head and replayed every time I have to deal with their idiocy. I thought I would share it here, but then thought the foul language might offend :)