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!

Thanks for those of you who have been reading and commenting, it really means a lot to me! Sometimes I feel like the online community are the only ones who understand. I know that's not true, but the EDS community seems so much bigger online. It's so much easier to find others who have been there, done that. So, thank you for helping me feel not so alone!

Not to many big updates here. Bug and I have been practicing her relaxation exercises, and she's done really well with them. She doesn't enjoy them, but said she has been doing some at school "to herself". I figure that means that they must be helping her some, or at least I hope so! We've had her brother practicing with us, since it's a technique that we could all use, and to also keep Bug from always feeling like she is being singled out. We attended our second therapy session and it also went well. In fact, Bug said at the end of the session she was excited to return in two weeks. Yippee! They worked on identifying emotions on faces, talking about what made you feel those different emotions (they are working up to getting her to talk about the Dr's) and they introduced breathing exercises to our relaxation arsenal. It was neat to see her walking up and down the halls blowing bubbles and then chewing gum and blowing gum bubbles. It was really apparent she was working hard on the breathing and exhaling while engaging in other activities. Amazing the things they have thought of to work with kids - she was having fun while learning to breath properly during other activities. It really reinforced the decision to make the drive to see someone who deals with children and Dr. phobias.

Nothing new is happening at school. We finished our first quarter and Bug got pretty much exceeding standards on everything. She is still doing a great job at making it through the day, so hopefully things have improved for her and our winter will be better too!

One thing that I just can't figure out is why her rings are still not fitting. Not the new ones from August, or the ones from a couple of weeks ago. Out of all 20 that were made, only 4 are fitting. Still, even with the weather cooling down some. All fit at the time they were made, and several hours after. The only thing I can figure is that her joints are actually swollen, not just her fingers. I'm not giving up on these recent splints yet (we've just been wearing less splints) - I'm going to wait and see what happens when it gets a bit colder. If they still don't fit, I'll call and see the hospital OT again. At this rate, I'm tempted to see about having the silver ones done, as everyone says you can adjust the sizing about 1/2 size up to accommodate swelling. Our rings have cost thousands of dollars this fall already ( I think $3000 between both fittings) so I can't imagine the silver ones being that off. Maybe we should start with one or two silver ones and see if that works and go from there... I'm thinking out loud. :)

Bug continues her swimming lessons weekly now, and also vocals. She is enjoying both, and we seem to have them spaced out enough that they are not tiring her out. She seems really happy and for that I am thankful.

Thanks again for your support and feedback!

It's time to finally come clean, and admit I've been avoiding this blog and a lot of other things lately. I just needed a period of denial. I think (hope) I'm over it now. ;)

I can't even say what started it. Was it the strain constant medical problems has on my marriage? Being tired of having to advocate at school? Being sick of all the medical appointments? The fact that Bug has now developed major anxiety to the point where we can't walk into a Dr office without a meltdown? I just don't know, I think it's a bit of everything.

Here's a little of what has been going on. Bug had her endoscopy, where it was found she does still have inflammation in the stomach and esophagus. This was based on the biopsies done. No infections, they did check for that. Just good old GERD. We changed her to generic prilosac since my insurance wouldn't cover nexium, and we are nearing the end of our first bottle. She seems better - so I'm crossing my fingers. He told me we have one more medication option and then we'd have to do another endoscopy and consider her for surgery. Obviously, no one wants that, so we are hoping this medication does what we need it to. The appointment was so traumatic, lets just say they had to bump our appointment back 3 hours because she was such a basket case. Then after the scope she vomited for 4 hours, poor kid!

The following week we went to our genetics appointment for our two year follow-up. Bug ran into the corner of the room and started crying hysterically as soon as the Dr. asked her to put a gown on. The funny thing is she's never worn a gown before, not even for the surgery. But it was a trigger for her. We told her she didn't have to do it, but she still wouldn't stop crying until the Dr left. So we learned very little. They did tell me her diagnosis stays the same, and that just watching her walk to the bathroom they could see her knees were hyper-extending way too much. They want me to start bracing them, but until we get this Dr phobia under control I'm holding off. They recommended she see a child psychologist who works with kids who have long term medical issues to try to get past this phobia ASAP. I made the appointment.

A week after that we had our allergist appointment, where we were supposed to have food allergy testing. I had requested a blood draw be done during our endoscopy but the allergy nurse told me we had to do the prick test. Had I known Bug would develop this Dr. anxiety, I would have insisted, but I had no idea that would happen. So, we show up for the appointment, and she goes into the corner again screaming and crying to take her home. The allergy nurse just said "forget it" and my allergist came in and said let's just postpone it again. He gave us a script for an epi-pen in the meantime, which he said we should have anyway because her cat allergies are so severe.

Another week goes by and we have our psychology appointment. They want to see Bug every other week for at least 4 sessions. They are going to work on ways to deal with the anxiety she is having, and once they teach her some coping skills a behaviorist will come and work on the defiant aspect. (they know the defiance is related to the anxiety, but even if she is anxious if we have to see a Dr we have to be able to have her looked at) The final goal is to have her see one of our Dr's at the hospital for an appointment (even if it's pretend) and they'll come and walk her through it. I think they have a good game plan, driving out there will be worth it, but I am not sold on her getting over this in 4 appointments. I hope that is the case, but this phobia hit so hard and fast... In the meantime, I'm hoping nothing happens where we need to see the Dr for anything, because there is no way locally they would know how to deal with this.

After that appointment, we went and had another full set of rings made. The first set still wasn't working out for us. This second set the jury is still out on... I just can't believe how much her fingers swell and contract! They had the room warmed up to 76, but the difference must be in part due to the morning vs late day swelling. That is the only other thing I can come up with.

To add to my stress, I got an e-mail from our OT asking me to start working with Bug on typing once a week at home. The reason being that her typing is currently slower than where she was at the end of last year. Why? Because she hasn't used her iBook at all since school started. When the OT tested her at the beginning of school, her typing speed had greatly increased over the end of last year, from the constant practice we did all summer. I am happy she isn't having the hand fatigue right now to *need* to use the iBook, but they should be having her use it some to keep the skills up. Why the OT's can't put that into her school schedule is beyond me - she is tired at home, we have all these appointments and relaxation exercises, and she needs to have some time to be a kid too. I could understand if she needed practice at home in addition to school, but why only at home I just don't get?!?! Especially since her iBook lives at school - she'd be using a completely different system at home... It just irks me, this is the kind of stuff that adds so much to my stress level. We had a meeting about technology at the beginning of the school year. This shouldn't be an issue. Grrrr... I worry that with winter coming (it's been so hot here, not even fall weather until this week) that there is a decent chance she will suddenly start having joint pain and more fatigue. Being familiar with her iBook and all set up can make a huge difference. But it's something that should be in place *before* the problems begin, not rushing afterwards. I digress ...

On a positive note - Bug is happy at home. She currently is not having joint pains, and has only come home early from school twice. Her stomach medicine is helping, and hopefully now that we stopped her vitamins it will stop hurting completely. She cannot tolerate vitamin c - even when it is in her multi-vitamins. From what I've read it is very uncommon to be allergic to vitamin C, but there are lots of people who have very similar problems to my daughter from it. A sensitivity. It is one of the things I wanted to talk to the allergist more about, but couldn't. While I know she has GERD, a food allergy/sensitivity would help explain why the medications are not enough. I know just since stopping the multi-vitamins there's been a big improvement, so I know there is something to this...

Anyway, now you all know why this blog hasn't been updated in a long time. :) Hopefully next time I'll be more cheerful again!