I'd love to say that I haven't updated because things are going well, but that just isn't true. This has been a hard fall for Bug, and honestly for myself as well.

Bug has been struggling with migraines. We've been through several medications to treat the pain with little success. She is now on a daily preventative and (knock on wood) it seems to be helping.

She also is still in two ankle braces due to ankle instability. We had to stop physical therapy a few months ago because she ran out of visits, and insurance said "she does not show enough improvement" to allow her additional visits. I want to scream at them that how can you say that about a 9 year old, but I haven't... yet! Anyway, PT at home is not anything close to the same as PT at the Dr...

This week she started having problems with her right hip. Both times she insisted on going to school. I don't know that letting her was the right thing to do, but she has missed a full 15 days so far and hates missing any school. We have an IEP meeting coming up soon and I suppose this is something to address. She will be starting back to physical therapy right after Christmas. That was the soonest they could get her in for a new evaluation. At that point we'll find out how often to treat her, but what stinks is that our insurance reduced approved visits down to 20 this year (from 24 last year). Which unfortunately means we have to take that into account as to how to treat her, instead of doing what the Dr. says which is constant treatment. (she also still has posture issues, and ankle problems)

On top of that, we're not even through two full quarters of school. I am feeling guilt because she is missing so much and I also am missing a lot of work. (I work at a different school) I love my job, but I feel bad for the kids I work with because I've missed a lot, and I feel bad for Bug because there are times that I would have insisted that she stay home longer if I was more available. But I can't stop living for this, and neither can she. I just wish I knew if this was a rough patch or if we are going to continue along this way. With both the EDS and migraines they say she will likely get worse during puberty. Hopefully we can hold off on that as long as possible!

In addition, I spent two months in physical therapy after seeing the orthopedist (same one as Bug) for my own ankle and knee pain. As it turns out I have OA in both knees, Achilles tendinitis, a heel spur, five bone spurs in one knee, three bone spurs in the other knee, plus most of the cartilage gone in that knee. I knew I had a lot of pain, and a high pain tolerance, but it wasn't until taking 1000 mg of Tylenol a day plus two alieve and getting ultrasounds for pain that I realized how much pain and how much it was effecting me. WOW. I was told by the orthopedist to come see him again when I need him. I was also sent along to cardiology and genetics. Its been long suspected that I passed the EDS on to my daughter, and with the OA and severe spurring at 33 it's time to find out. I also have been having issues with going from kneeling or squatting to standing with getting really dizzy like I'm going to pass out. He wants me checked for POTS. So - I guess maybe I'll start getting some answers soon too.

So like I said, it's not a good thing I haven't written. At the same time, I felt that I owed some kind of update to let you all know Bug and I are still around, I just haven't felt like writing about it lately.

I hope you all have a wonderful holiday!

As usual, it's been awhile since I've posted. We had a great Christmas spending it with Grandma and Papa. Both of the kids had fun, and we even kept up with Bugs PT and relaxation exercises. I was pleased with that. :)

Bug has really enjoyed working on her mini-tramp. I got one with a bar on it to make sure she has the extra stability or something to grab if she needs it. Several of her PT exercises are done on it, and she likes to just jump in general. It's great - I wish we had gotten one sooner! Her face just lights up when she's on it. Plus, I got a great deal from Amazon.com and paid only $59 and no tax or shipping. If only I could get a Bosu ball for a deal like that!

Grandma kindly sent her Bosu ball back with us for a few months since she currently isn't using it. It gives me a little more time before shelling out another $100 on PT equipment. We are also still looking for a 4 lb medicine ball that is gel filled and smaller than 8 inches. I thought it'd be easier to find than it has been, but part of that is because online a lot of places either don't say if the ball bounces (which is what we want) or what the diameter is. The PT told me I could e-mail him the ones I found and he can help me, so I think that's what I'm going to do if I don't have better luck.

Speaking of PT - Bug graduated Friday! No more PT unless something changes. Her hip has not been a problem since we've been seeing him, so our directions are to keep doing PT nightly and continue to work on her sleeping position to try to make sure we can keep her legs from being up in the air at night. I'm SO happy about this - because even though Bug likes PT, neither of us wants to drive to Iowa City anymore than we have to! This is one less appointment, yippee! So now we're done with OT, and PT for the moment, and I am SO THANKFUL!

We also did therapy Friday, and talked about our upcoming GI appointment on the 15th. This is the first "real" doctor appointment since her meltdown, and I'm nervous. We decided that what we are going to do is meet with our therapist 1/2 hour before the appointment, and the therapists will attend the appointment with us. I am contacting the GI ahead of time and requesting we not do any invasive procedures and let him know that we are planning to have Bug leave the room before we talk about what next, what if's, and so on. At this point we are just hoping to get her in the door and to cooperate with a basic appointment. If we can achieve that, we'll go from there.

The therapist is going to look into how we can have Bug removed from the room, if Child Life can be ready and well aware of her case. In the past Child Life has not been able to cope with her, they are used to children who are afraid because they don't know what is going to happen. Not kids who know darn well what's going on and do it often, and are afraid. They are also going to see about making sure we do not have a Child Life specialist that we've had in the past, both for Bug's sake as well as because I think they will be biased against her. That's what happened before, and after all of this therapy I don't need someone judging her on the past and making things worse.

After I hear back from the GI, I'll pass that along to the therapist(s) for them to plan based on what our appointment is going to be like. My biggest fear is that we're going to need another endoscopy - sometime soon. I'm sure she'll need one again, but I just hope it's not for awhile. However, even though I know the medicine is helping, she still is sleeping on a huge pile of pillows, requesting to snack a lot (because her tummy is starting to hurt, she says if she doesn't eat right away it starts to hurt bad) and can't eat a ton of foods. So with that in mind, I am worried. On the flip side of the coin, she's not missing school for feeling ill, and she isn't having any throw-up burps. That's all good. So I'm going to cross my fingers that maybe we'll be in the clear for a bit longer.

On a side note - the silver rings splints are working out nicely. A couple are too big to where on non-swollen days they will slip almost all the way down her fingers, but most days they are just loose around the joint where they belong. The days they are falling down we just don't wear them. The others are also a bit loose, but not nearly as bad. I still need to take a picture and update it here, they are truly beautiful!

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