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!

In light of yesterday's super long post, I'm going to try to keep this one short. We seemed to have gained an approval on the ring splints from our insurance today - and plan to have them fitted on Monday. Yippee! It looks like it is going to be 100% covered as well. Double Yippee!

Also, Bug woke-up this morning in pain again. The same area as last time, but the pain was not as extreme. She was able to move, so I gave her Tylenol and told the school no gym or recess. Mid-day she was fine. I talked to our genetics nurse who does think that the last two times this happened it was a dislocation, and that this morning could have just been a sub lax. She gave us a referral to have a physical therapy evaluation on Monday. We are hoping to just be able to walk out only needing exercises we can do at home, but there is a chance we might have to go back. I'll cross my fingers! It will be nice to get another opinion on where her main problems are and how to help them.

I'll keep you all updated - have a Happy Thanksgiving!

I had a couple of minutes (that's rare these days!) and thought I'd update this blog just a little bit. First of all, I think we are going to order Bug silver ring splints next week. I am still waiting for the final medical codes to give the insurance, but should have them in the next day or two. However, they were pretty sure that it would be covered, and since we not only met our deductible for Bug, but also the max out of pocket expenses for the year, the rings should be covered 100%! Ok, maybe I shouldn't be so excited about that, but if you're going to hit the max out of pocket expenses you might as well be able to make a claim or two after that. LOL

Why are we trying to go silver? Well, while we *love* Keith and his custom rings, with the amount of joint swelling Bug seems to be having this year we've already gone through 3 sets and currently only have 4 rings that fit. So 4 out of 30 is not so good. He makes them beautifully, and they fit just right at the time. But as soon as her fingers start to swell we can't get them on, or sometimes off. While a custom fit has worked great for us the last two years, when your joints/fingers swell it means that there is no room for expansion in the ring, and it just won't fit. After reading about the silver ring splints from several adults with EDS, and talking to the people at the Silver Ring Splint company and our OT's office, everyone seems to agree that while you shouldn't make a habit of stretching and contracting the silver splints, they are able to be slightly adjusted when fingers swell. Something we seem to really be needing this year.

Yes, they are expensive. But our OT bills are currently running 1,200-1,500 a visit for our current custom rings. Keep in mind that's for 10 rings, time spent, and materials. However, the silver rings are $69 for 8 of the ones Bug needs, and then the two thumbs will be between $250-$350. So the initial cost will be a bit (but 100% covered I hope!) plus we'd still have the OT's time billed. BUT - hopefully we would not have to keep going back every few weeks and getting new ones made. On top of that, as Bug grows she might be able to move some of the rings to different fingers and only replace a few at a time, something that is not currently an option since they are custom molded.

Now, for parents who are just ordering ring splints for their children for the first time, would I recommend these? Heck no! But, Bug has been wearing them since age 5, that's 2 years now. During that time, she's had one stepped on, one vacuumed up by a janitor, and one lost. That's not too bad. The first two things happened within a few months of starting wearing the splints. The last one was a year ago. That's a pretty darn good track record for a little girl. :) However, not all kids are going to be that responsible, and while we're having swelling issues now we had great luck with the plastic custom splints until this school year. I really think that for kids without swelling and/or just starting out they are the best way to go. But, if for some reason they don't work, this is another option for you to consider.

Another thing to note is that we have Blue Cross, Blue Shield. According to our disabilities center, they cover silver ring splints for Ehlers-Danlos Syndrome. I was also told by the Silver Ring Splint Company that they have customers who have gotten them covered by BCBS. Blue Cross Blue Shield also told me that they believe they are covered as durable medical equipment, but again until I have the CPT code from our geneticist, they won't guarantee that 100%. My point is don't give-up hope that you can't get them covered, apparently Ehlers-Danlos Syndrome can be an exception for splints even if they aren't covered for RA or other conditions. Personally, I think that's silly, but I am thankful if we are covered. Another thing is that your insurance is likely to ask for a "hic pic" code. (I don't know if that's right, or if it is supposed to be "hick pick") They like to have this to help decide if they cover the equipment. The Silver Ring Splint company does not have one, and no matter how many times you tell your insurance that they might keep insisting there is one. They are wrong. Know this before calling, and tell them they can call the Silver Ring Splint company themselves to verify if needed. It will save you a lot of time, trust me! LOL

Also... I think Bug had a dislocation or sublax this week. It was on Saturday. She woke-up crying and screaming in pain, begging us to come get her and carry her into the bathroom. All day she laid on pillows on the floor in pain. We gave her a heat pack, but it didn't help. She didn't want any Motrin or anything, so we just let her be. She didn't move almost all day, and when she did have to move she cried in pain. At 5:30 I was cooking dinner and looked up and there she was, smiling at me and said "My leg popped, and now I feel great!" She said it was a "tiny bit achy" for about 10 minutes, but she was walking around the house, talking, and like a new kid. From that point on, she went on to start running and playing with her brother.

This is now the second time this has happened in about a 6 week period. The first time was similar, pain in the exact same place and same amount of pain. However, she didn't pinpoint a pop like this time. This time she heard and felt it. I feel silly looking back now because I should have guessed it could be a dislocation, but because of where she was pointing it wasn't obvious that it was a joint. Thinking back, the pain could have been migrating, or, it could have been in the joint and it was hard to point to. The hip isn't exactly as easy as a fingertip. ;) A couple of people on the eds mailing list have given me some suggestions and ideas for the next time it happens to get a better idea of what is moving and how to help it.

I am kind of sad about it though. She's had a lot of hip pains off and on since we first found out about everything. She's popped a lot all over her body. But until now I've not really been able to decide if she was sublaxing or dislocating or just making noise. However, this hip stuff I'm pretty darn sure isn't right, and is one or the other. I guess it was bound to happen, I just wish that it would have been years from now instead of now.

Oh! And Bug LOST HER FIRST TOOTH today! Woo-hoo! I was starting to think it would never happen - but it did! She's 7 1/4 years old, and pleased as punch! LOL

I thought I'd spend a few minutes going back and posting about what we tried at ICATER - the Iowa Center for Assistive Technology Education and Research. (Thank's again Jim!). I'll start with the things that Bug tried and liked. Keep in mind all are adaptive Computer Access Devices, not toys and are priced as such. However, if your child needs them for school, your school very well might be able to get them or already have them.

First off she liked the Joy Stick. It was an "alternative to using the mouse for movement on the computer". I think the thing she liked best was that she didn't have to use her fingers, or do any gripping motions. She just touched the palm of her hand on it and moved it whichever way she wanted the mouse to go.

Next, the more logical choice for her, was a large Track Ball. This was her favorite one, although she tried many. I think the ball and buttons were just the right size for her small hands. Logitech Optical Marble Mouse (USB/PS2)

She also *loved* Dragon NaturallySpeaking, the only problem was that because she is still so young the software had a very hard time learning her voice. Even with lots of training it still wasn't understanding even basic words for her. But she still thought it was wonderful, and wants to use it. Jim from ICATER told us that it is normal for the program to have problems with recognizing children's voices, but that he thinks another year from now we should be able to get it to work a little more easily. Of course, if we have unlimited time to train with it we could probably get it to work, but we don't right now. He said that he's even seen someone with a severe speech problem train it, it just took a long long time. So it is possible! For us, this right now is looking like our best option long-term. Bug loved it, it was amazingly fast, and it would meet her needs for multiple programs.

Kurzweil was another program that she liked, but I don't think we need at this point. It was a "scan-and-read software that reads documents and Windows applications". The great thing about it was that you can scan worksheets in it, and type the answers right on the blanks. The drawback was that someone has to create a text field for each of those lines, and if you have motor skill problems or a lot of fatigue that could be a hassle. When we talked to our AEA about it, we decided should Bug ever use that program that someone would create those text boxes for her ahead of time to reduce the extra work. Just another option for those of you who might need it. ;)

The final product that was a hit for Bug was Co: Writer. This is a "Word prediction program to use Linguistic Word Prediction intelligence". She *loved* this, and while you have to train the program to your vocabulary, it happens very quickly. The reason that it isn't the number one pick is because you still have to do a decent amount of typing, or picking out the words from the selections that pop-up. So while it does reduce the amount of time and stress on the hands, if you can get voice recognition software to work I really think it's the most helpful and logical choice for a child with hand fatigue, motor problems, flexible joints, etc.

Other options we tried but aren't really of use to us (but could be to someone else!):

HeadMouse Extreme. "Replaces a standard computer mouse for people who cannot use their hands". Way cool! Just not something we need. But it sure was fun to play with! You wear a headband and just move your head to control the mouse. Fun!!!

Fingerprint Scanner (for logging in) "Provides users a convenient and secure way to manage and access multiple security phrase and codes with a fingerprint". Again, really cool! But not something we need. One of the great things Jim did was let Bug play with some of these high tech devices just for fun. It was really great of him! (this isn't he exact scanner we tried, but a similar product) Key Tronic Secure Desktop Scanner, Fingerprints (F-SCAN-S001-US)

AlphaSmart 3000. "Allows individuals to create, edit, and store their own original compositions and essays". I suppose this is helpful for some, but not for us. For starters, it is limited, since it is not a full blown computer. Good for a short-term solution, but again, if you are looking at a child who has a long-term disability, I just don't see the point of training them on software/computers that can't grow with them. However, it is lightweight and easy to transport, less expensive, and probably a bit more durable than some of the other options. It does have some word anticipation, and I believe programs that can be loaded onto it that make it more age appropriate.

Clicker 5 was a cool little program. However, it is for children who are much younger than Bug. I'd say pre-school to K personally. It is a "Writing support and multimedia tool that enables users to write with whole words, phrases, or pictures". The plus side was that it was easy to use. The down side was that it is really limited on how it is used. You input a series of words and then a child can select each word and write with them. It does show pictures to go with the words, which makes it great for early readers. But it is very limited since you can only work with the words that are currently inputted in the boxes. Great for basic starter sentences, but not helpful for kids who are already fluent readers and writers.

Intellikeys was a cool adaptive keyboard we tried. It is really hard to explain, so click on the link to view it. I would say it is helpful for kids with fingers that tire easily, and who work with computers that have stiffer keys on the keyboard. An option for a child who is able to type and doesn't need the voice recognition software but finds a traditional keyboard a bit difficult to work with. Bug loved it, but again, it just isn't quite what we were looking for.

Other things to note. ;) Jim told me he was not a big fan of iListen or ViaVoice. Also, we are going in to test another new program which is actually a combo of two. Word Q and Speak Q. I will give an update after we go test them, just under two weeks from now.

Hopefully this will help someone out - I cannot say enough how wonderful it was to have this resource available to us. Even though our AEA has access to some of these items, they do not have a center where Bug can just go and test them off and on at her own pace. It was a huge leap forward for us to be able to do this, and I hope this post will help someone who doesn't have access to a center like us!