The one (and only) good thing I can say about this burnout mode is that it is me who's burned out, not Bug. ;) That in and of itself is a blessing.
I think that most parents agree that we would do anything for our kids, and we try our best to live by that. I know I do! But man, it gets tiring! I know we don't have it nearly as bad as some people. I know that we don't have it as bad as some kids with EDS. But the fact of the matter is that my personal level of stress just keeps getting higher and higher. Some days I wonder how it is that I am supposed to help my daughter when I have nothing left to give?
We had a variety of appointments Friday. Psychology was first, and it went well. Really. The hard part is that 1) It was more missed school 2) We got more homework on feelings (journaling) and relaxation techniques 3) I found out we see the GI in less than a month, and we all know Bug isn't ready quite yet - which I'm assuming means extra therapy leading up to that point.
Next was PT - which again, was great! Bug had a good time, she was *really* tired, but she did everything he asked with a smile. We spent a whole hour in PT this time, and learned some new exercises. The hard parts for me: 1) We have to go back, and I thought we were done (I know, wishful thinking!) 2) We have to keep a daily PT log, and I stink at record keeping let alone staying on schedule. Now he'll know exactly what days we missed! LOL 3) He identified some other areas of concern, which while I'm glad to know it's still hard to hear.
Finally, we saw the OT. We love our OT, and were SO excited to try on Bug's new Silver Ring Splints (a full set of 10). Well, either her hands were swollen during measuring, and now weren't, or he was a bit generous during the measuring because she swells so much, or a combo. But regardless the rings were a bit on the large size. He adjusted them, but several still were a bit loose, to the point that Bug took them off an hour later because she was afraid they were going to fall off. I know she'll grow into them, and I think what I'll do if they aren't fitting better by Monday is try moving the fingers around. We should be able to at least get a few fingers working well. I'm still holding out some hope that they will fit better now that we are back in our typical environment which is warmer than his office. I guess we'll see!!!
I feel good about being proactive, and doing things like working on strengthening her muscles now before things get worse. I feel good about her learning more about feelings (and feelings about Dr's and being "different") and how to relax. I am just going through another phase of "I wish my child didn't have Ehlers-Danlos Syndrome" again. I suppose it's a private pity party, LOL. What's crazy about it is that Bug is doing well, and it is so obvious that these things are paying off. So why can't I just do them, and not feel sorry for her/us? Wahhhhhh....
Anyway, things are going well - and hopefully after our Christmas vacation I'll feel more relaxed and ready to be "supermom" again. Bug did tell me several times today what a nice Mom I was, and how happy that made her. :) She also told me yesterday how much she loves shopping and "hanging out" when we go to Iowa City. I think it's little comments like that which keep me going. That and her most amazing smile - there is just so much love and beauty in it and her. She is remarkable.
Talk to ya'll later! (that's hello to my southern friends!)
First of all, I'm going to do what I'm soooo good at, backtrack a bit! After my last post about everything being all set to go I got sent back to zero due to someone who couldn't speak English. Now, don't get me wrong, I couldn't speak another language to save my life, so I admire people who can. But, do not work in a customer service field where you are gathering important information until you can speak it fluently. Please. This person I spoke to ended up not understanding anything I said (I wondered at the time, even to the point where I called right back and spoke to someone else) but I had no idea the damage she would do. After our call where all I wanted to know was if the splints were covered (I had gotten codes the last person I'd spoken to had asked for, which is why I was calling again) she went and spoke with a nurse and gave her some kind of misinformation which caused it to go into Bug's file that Ring Splints are NOT custom made, and therefor not covered. To make matters worse, she claimed our last set of rings made at the hospital were not covered and were rejected. Of course, she calls me and tells me all of this after I'd made the drive to have the splints measured (and had made a call on the way to Iowa City, spoke to another agent who looked at the notes and gave me the go-ahead). I was livid to say the least. The thing that upset me the most was that if she had understood even the most basic part of our conversation she would know that 1) Ring Splints exist (she had tried to tell me there was no such thing, until I told her to look at our file, we'd been having them made for 2 years already) and 2) That the whole point is that they ARE custom made, hence the 1.5 hour drive to see an OT and have measurements made, and rings ordered. I spoke to another rep, asked that the non-english speaking one not be allowed to work on our case anymore, and got a manager.
I spoke to the manager and explained that I had talked to 7 reps before this one, and all had understood clearly what I was asking about. Several had spoken to managers, or the claims departments. None had any problems with what I was saying, the only reason for the callbacks were for additional information. She looked in the file and asked to call back the next day so she could look into it all more. The next day, she calls, and apologized profusely, saying she had no idea what that last rep had been thinking/doing. She had spoken to the nurse the rep had, and had cleared things up. However, she didn't stop there. She spoke to multiple people in the medical claims area until she found one familiar with Ehlers-Danlos Syndrome and ring splints. She was able to determine that the splints were covered, and then told me that she was going to find a way for me to order them through a medical supply company so that I would not have to pay out of pocket (our order was almost $1,000) and get reimbursed. I said ok, but didn't really think it would happen. Everyone knows that the Silver Ring Splint company does not take any insurance, and Silver Ring Splints are not an item medical supply companies carry. So, I didn't hold my breath.
The next day at 8:30 AM my phone rang, and it was the head of the prosthetics division of BCBS down in Texas. She told me she was working on things, and that my "dear little girl" was going to get her splints and we were not going to pay anything for them. She said that she was dealing directly with the corporate office of a prosthetics company in Iowa, and that they would do it for us. She had me fax our order sheet, and then called me back the next day to say the order was placed and should be at our house next week. (this week now!)
I cannot say enough good things about this now. For one, I have two great contacts in the insurance company. One whom I have a direct number for. The other told me to use her name should there ever be an issue again about the rings. She also told me that now that we've done this any time in the future we need to place another order it is in the file to be handled the same way. How great is that?!?! I was happy enough to have found a couple of people who actually knew what we needed, and if it was truly covered, but to then have them go so far out of their way and actually find a way to make us not have to pay a penny out of pocket? That was outstanding! Let's face it, $1,000 is a lot of money to pay out of pocket and then have to wait and see how much and when the insurance would pay it.
So - the moral of this story is don't give up, don't be afraid to ask for someone "higher up", and keep going even if it seems like you're a broken record. If you can find the right people, they can find a way to make things happen for you!