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!

I am going to be lazy and just post here what I sent to one of our EDS support groups. I am just not feeling like writing it all over again right now. :) I hope it makes sense! Obviously there are a few things that were already addressed in the blog, but there's also some stuff that wasn't. The PT part is one that is now outdated, since insurance is telling us no more for the ankle... Anyway, hopefully this fills in some blanks!

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Well... it's been quite a month!

First of all, my daughter made it through the community musical. It was incredibly taxing on her at times, there were several nights they had practice that she was in pain. But she just sat down and limited her participation to what she felt she could do, and made it through. I was proud of her for that, but also caught myself in tears several times because I kept thinking "it isn't fair that she can't be up on her feet like all of the other kids!" Needless to say, I kept those moments brief and to myself. :) She did an awesome job in the musical, and almost 4 months of hard work and practice came to a sudden end.

One thing I did do is buy her a Kajeet cell phone. It's a company that caters to kids. I did it because she'll be 9 in a month, and I'm starting to see her pull back from some activities because she's afraid of being without me. We're at a point now where her peers are going to notice. So - instead of her being the "baby", I decided to get her a cell phone so she can call me should she need anything, and I can be there in less than 5 minutes. It brought her (and ok, me too!) and incredible amount of peace of mind. I wish I had done it sooner! The phone was a great deal - $90 at Amazon with 100 non-expiring minutes, and 1 year of GPS location service on it. I also love all of the parental control features, but since her phone is only for emergency use right now we don't need them. That said, when she is older and allowed to use her phone for leisure too I am excited that I can control so many aspects of when she uses it.

Medically we are still in PT. We are doing every other week right now but I'm not sure if we're keeping it that way or increasing it some. I'm waiting to hear back from the PT on that and some other questions. Her new ankle brace is still comfortable, although the heat makes it itch and she isn't a big fan of that. PT we're still doing water therapy and while I'm sure it helps we've had no huge improvements lately.

We saw the GI - and they think that Bug has been having abdominal migraines. It really fits - and we've had success treating her stomach pain with ibuprofen since given that idea. Wouldn't it be amazing if this is the missing piece we've spent the last 3 years looking for? Why she was having this severe, breakthough pain that didn't respond to any acid blockers? Anyway, there's more to the story. We also met with her new Pedi (who is also her Orthopedist) and on our list was headaches. I asked him if Bug could be having migraines in additional to abdominal migraines because sometimes she has the headaches first, then stomach aches. (I have found this out while keeping notes the last few weeks) He said absolutely, she could be having both. I mentioned that I had read most kids outgrow abdominal migraines around 9, but start getting the other kind then. He said this is true, so the good news is hopefully some of the stomach pains will start to ease up before too long. However I know there are some people who continue to have stomach pains with migraines. So, maybe the pain isn't quite as bad?????

He recommended that we continue with the ibuprofen for now, as long as it is working, but that if it doesn't we do have other options and he can manage that for us. He looked at the script the GI gave us as our second med to try and agreed with what I suspected, which is that it's to treat IBS and was just another shot at eliminating things Bug doesn't have to figure out what she does. He felt that we shouldn't even try that, as the abdominal migraines and migraines seem to be related - so to call him if the ibuprofen doesn't work.

We also got to ask him about her ankle brace, as Bug has been very concerned about when she will get it off. I didn't want to commit to anything because I wasn't 100% sure either, so she asked him. Dr. Phillips told her that he wasn't sure, it depended on many things. One of those is how much she works at home on her PT exercises. Another is how her body reacts to the PT. He did tell her that even if it was strong enough to not wear it all of the time she would probably still need it for gym class and activities, to make sure she didn't hurt it again. In the meantime, he let her know if she was relaxing around the house she didn't have to wear it. (which we already were doing) She seemed to deal well with all of that. I asked about PT, and how often we should be going, and for how long. I told him it seems like there is always something needing work. For example, that day her other foot was "feeling like it was going to fall off" to the point she didn't want to walk around and shop like we usually do. He checked it, and said it was fine, just really loose. PT would benefit it too. So - the answer to the PT question was 1) what will your insurance pay for and 2) you go until it interferes in your quality of life and then you back off. Ummm - ok, so I know in some ways that is a good answer, but in others I'm still left scratching my head. LOL I guess we just go until we are sick of it? Or the PT is sick of us? Our PT order doesn't expire for a year, and has no limits on how often we can go. Weird - but good, right?

What else... Her allergies are acting up, so she's back on nasal spray. He is going to manage her allergies/asthma from now on too unless something weird crops up. No more super mean allergy Dr. - woo-hoo! Also, her therapist moved to MI. :( But, she put Bug in touch with a new one and Bug seems to like her. They set some goals to continue working on based on what she was doing with her old therapist. We haven't met with her solo yet (she met with Bug and her old dr. together) but I need to get an appointment set-up soon so we can take advantage of summer, ie. no school!

Bug did have another dental appointment - she didn't panic AT ALL! On top of that, she needed sealants and had a small cavity which we had to go back a week later to have done. She also made it through that appointment without ANY MELTDOWN! I was on cloud nine! All of the therapy has worked!!!!!!!!!!!!!!!!!!!!! Our last cavity was a disaster - this one was a breeze. Bug even said afterward that she couldn't believe she was so worried about it before, because it wasn't bad at all. WOW! It might also have helped that she didn't need shots with it, but still, I've had them done without Novocaine before and it still isn't discomfort free. It was such a good feeling knowing that we do not have to fear the dentist anymore! She has survived cleaning, fluoride, and the dreaded cavity/filling. I am so happy and proud!

Sorry for such a long update, but it just seems like we've had a lot of things going on lately. I am just now starting to feel like it's summer. We've had so many appointments my head was starting to spin - but I think we're pretty much done now for awhile, and, I think we've made some serious progress!

At least Blue Cross, Blue Shield seems to believe so. I am bitter to say the least.

I had written our PT a long list of questions after our Dr. appointment last week, asking about how to handle our PT from here on out, including his recommendation that her other ankle needed PT. I had brought in his script last week and dropped it off, because I knew we were almost out of sessions. While in the office, they told me I needed to call my insurance, so I did. I spoke to someone very high up, who is in fact a Dr. and a physical therapist and familiar with EDS. She told me that she would need to talk to the PT, not me, which was fine. I did ask her about my coverage, and she told me that PT NOT the orthopedist decided how often Bug should be coming, and that my policy would only cover PT that was showing improvement, and would not cover any maintenance. She really stressed the improvement part...

Fast forward to today. Today we went to PT and our PT informs me she spoke with the same insurance person I had, and that we would need to talk at the end of the session about things. I at this point knew how it was going to go, so I wasn't caught off guard. Our session was spent teaching Bug some extra exercises for her posture, as well as for her shoulder, plus more for her ankles. The PT gave me lots of printouts on these exercises to take home to work on. (see where this is going?) She also checked her ankles, and agreed that the left ankle seemed much weaker than the right (the one we have been working on). She had the student who was shadowing her also feel how loose both ankles were.

As this is going on I went ahead and opened the door knowing what was coming. The insurance lady had spoken to her several times, and basically told her that they would not continue to cover work on Bugs ankles past the 24 allowed yearly visits (we are on 23 today). That she should send us home with exercises and "see what happens" from there. She stated that while they could approve more sessions for another issue, it would be very unlikely it would be many (PT seemed to think about 5) so it would be in our best interest to "save" some. That with EDS there is only so much you can do, because it's the nature of having Ehlers-Danlos Syndrome.

I am so pissed. The PT was really conflicted, because like me, she knows that without improving these things now that Bug will have a hard time as she grows. She mentioned puberty, and how things will be worse for us then. I know that, but I hate to think about it. After all, we've been through 23 PT sessions for 1 ankle in 4.5 months. I don't want to think about it getting worse yet!

She was worried that something might happen to Bug and we need serious therapy and we won't be able to get it. Unfortunately, I have to agree after what I've heard from the Blue Cross Blue Shield lady, and from what she said about her conversations with the BCBS lady. I know I will fight if that did happen, but in the meantime, what about working to keep it from happening? I can't fight over every single thing - the odds are too high that at some point I will need these people. But the attitude that "it's just how EDS is, so we aren't going to waste our resources and money" really makes me SO mad! This is my daughter - she is not a number or a faceless person to me. It's already totally unfair that she has to spend her life with this degenerative disorder that no one can cure. But now we have to deal with the fact that our insurance sees the PT that is helping stabilize her some as a waste because it doesn't fit neatly into their timetable for healing, and it won't ever "fix" the problem.

I asked the PT about the other ankle, and what we should do for it besides our home exercises. She grimiced and said she'd recommend bracing it too in light of this. Nice - so now Bug can wear two itchy unattractive ankle braces around. Thank you BCBS - I really like how the solution to my daughters problem is all about being cheap even if it's costing her emotionally.

Bitter. I am so freaking bitter right now. I suppose the good news is that it frees a lot of time up from appointments. On the flip side of the coin that means an increase of personal time invested daily. How to keep Bug motivated on an ongoing basis to do them all is beyond me...

I hate Ehlers-Danlos Syndrome. I hate that this is likely just the beginning, and that no one seems to believe there is a point to trying to stop what is going to happen in the future. I believe that we should fight it as long as we can - but I can't do it alone. That's the problem.

Oh well, I'll just have to try to keep the PT up at home as best I can, and hopefully that will be enough. Right??? I guess I shouldn't just assume that because everyone says her ankles are loose, and she has times where they feel like they will "fall off" that it won't all be ok if we work hard at home. Right???

Time to put my positive hat back on, and stop complaining. It won't do any good anyway. ;) Plus, Bug needs me to be strong, because I'm the one she is looking to as an example on how to react. If I am depressed and bitter, she will only feel sorry for herself instead of learning to overcome this. My vent is over for now, and I hope that our PT at home is successful! There - that sounds much more positive, right?!

She doesn't know! :) Actually, what she said was she believes that it was a small bone in her foot that must have moved out of place, and slid back in. She said that anything muscular shouldn't have suddenly felt right again, or never come back. It's now been 6 days since it all happened and not once has Bug had any pain or limited motion since her foot/ankle "suddenly felt right again". I am thankful for that, but am left scratching my head.

The PT and I had a funny talk about it all. She was talking about how she's read so many times about random subluxing and dislocations, but how it's so hard to understand as a person who doesn't have it happen. I told her I knew where she was coming from, because even when I suspect that is what happens to Bug I still often find myself looking for that other more logical reason for her pain/issues. I wonder if I'll reach a point one day where I just don't worry as much and accept it for what it is, instead of trying to complicate things by looking for other possibilities?

Anyway, we've had a great week since and are enjoying the holiday weekend. Only 8 days of school left, WOO-HOO!!!!!!!!!!!!

As I mentioned in the post before this, our local PT offered to come to the school and meet with our PE teacher, principle, and the AEA's PT. This meeting was "unofficial", held to get a better idea of what is going on at school in PE and what the AEA PT was doing with Bug. It was also so our PT (Julie) could share her concerns about Bug and what she is struggling with.

First of all, I need to mention that Bug has been out of PE and all recess for almost 2 months now. She has been going and helping kindergartners and first graders with reading during recess, and loved it! I had suggested her helping other students with reading to her principle as an option as it would make her feel good to be the one giving help instead of getting it. He thought that sounded great, and set it up. Bug has really been happy about it, still sad about missing recess, but not sad like she was before we set this up. During PE time she has been allowed to work on a laptop so she wouldn't have to just sit and watch her peers. Anyway, even with having those things to do she still was missing those activities (what kid wouldn't) and wanting to go back. Our PT was torn on what to do, as she still felt her ankle was weak but she also knows that exercise is good for kids. The question is/was, could she get that exercise in a safe way at school?

The meeting was ok, I think that every person there really wanted what was best for Bug. Of course, it is still a struggle to agree or figure out what that is. We ended up with starting her back into PE this week with the gym teacher watching her carefully and trying to place her in positions/activities that wouldn't be as fast-paced. Then on the non-PE days, she would go to the two 15 minute recesses with the teachers out on duty instructed to keep an eye on her that she didn't start running around. Next week she would do recess on the PE days too, and if all went well then she would start participating the following week in PE, both 15 minute recesses, and also the 30 minute recess. I think our PT was on the fence about this plan, but willing to give it a shot since Bug really really missed those activities.

When we saw her for PT therapy after school yesterday, she said she would be happy to write a more detailed note to the staff about what was and was not ok as far as sports/activities. You know, something addressing the age-old question of "are jumping jacks ok?" and so on. I am SO excited about this, as for the last 2 years we have wanted a list like this but haven't been able to get one. She also said she would e-mail the PE teacher to talk more about what activities he had planned so she could get more specific about what might or might not be ok for Bug while doing them. All of this is great - and I'm so happy that she is willing to do this!

The other thing we talked about at PT was the fact that Bug's AirCast had actually ripped across the bottom over Spring Break to the point where Bug said it wasn't helping. Our appointment with an EDS pedi who specializes in Sports Medicine and Bracing isn't until June 29th, and they don't have a waiting list to get you in sooner. So, I wasn't sure who to get a new brace from, or what to get. The PT said there wasn't anyone local that we could see in the meantime, and so we decided I should call the poor geneticist about it again.

Today I made that call, and found out a couple of things. First off, I should keep calling the Sports Medicine Pedi at least weekly to see if we can grab a cancelled appointment. Secondly, she thought we should try an elbow sleeve brace from the drugstore on her ankle. When I expressed concern about that not being stable enough, we got into even more detail over what exercises Bug has been doing in PT and where her progress is at with them. After hearing about that, the genetics nurse said "Well if that's what's going on with her ankle, she has no business being in gym class!" She went on to tell me she should be having modified PE, and some other stuff I won't get into on this blog. (it's nothing bad, don't worry) She agreed to talk to our PT about Bug so they can share what each of them know and come to some sort of conclusion I can then share with Bug and our school. She also offered to speak to the school/AEA if needed, and write any medical letters to support the requests/recommendations.

So - I hung-up with her and called leaving her phone number with the PT. I did all of this in the office at the Middle School where I have been working since January as an associate with special needs kids. (I love my job by the way. It's wonderful to help other kids!) As soon as I hung-up I couldn't help it, I started to get teary eyed. One of the secretaries saw me and asked what was wrong, which then opened up the floodgate. She gave me a hug, which caused me to let my guard down more, causing me to cry more, at which point the principle walked out and asked if I needed to talk. Before I even thought about it, I just said yes, and the next thing I know I'm sitting in his office talking about how hard it is not knowing how long this is going to last, what services we need, how to be nice to all of the staff/AEA and still effectively communicate how important it is to help Bug at the same time... I told him how hard it is with all of these Dr.'s trying to communicate through me, but I can't seem to get them all together to talk. It's no one's fault, it's just hard when we live so far away and have Dr.'s all over the place. I told him how I feel foolish, for just having a meeting yesterday about PE and deciding one thing, only to find out the very next day another Dr. said no way. Not to mention the fact I had just written Bug's teacher a note this morning thanking her for her patience while we worked all of this out, and how we should be in the clear through the rest of the year. Now just an hour later it's all changing. And worst of all, I had just kissed my daughter good-bye not 10 minutes before this call, and she was so happy to finally be able to go to recess again. She was on cloud nine, and now it's all at risk of being taken away again. How do you explain that to an 8 year old in a way that she can not only understand, but accept????????

The principle (aka my boss) was nice about it all, he let me gush on and then told me while he didn't personally have any advice, he thought I might want the phone number of the head of the special education department in our area. He told me that even he might not have any answers, but that he's a great guy and might have some suggestions for me. I thanked him for the number and tucked it away, I think that I might give him a call after I learn more from the PT and geneticist. Even if I don't do it now, it's good to have for later.

I am so emotionally tired tonight. I feel so over-stimulated. I feel like I'm at a dead end yet I know I'm not. I know that all of this will pay off in the long run, but right now any sound in the house is just too much. I need to write all of these thoughts, emotions, fears, and questions down while they are fresh in my head, not only as a personal release for myself, but also in hopes that my honesty about the issues we face can help someone else.

That said, I'm done with this post, but will still be doing another one tonight after I get my children to bed... Stay tuned!

Wow - it's weird looking back and realizing that what has felt like a couple of weeks of ankle issues has been going on for almost 2 months now. It's hard to believe that with all of the time that has passed we are still having such a hard time. Thank you to those of you who wondered what's new, and pointed out I haven't updated lately. It's nice to have a kick in the butt from time to time! :)

So, I'll try to bring you all up to date. After Bug started having her ankle randomly "give out" in early Feb. I did take her to a local PT instead of trying to make the trek to Iowa City for PT again. I am thrilled about this decision for so many reasons, the most important one being that the PT we have is AWESOME!!! She is just so good about researching EDS (online, talking to various doctors, whatever she can get her hands on) and on being creative in trying to make boring exercises more interesting to Bug. She speaks directly to Bug and listens to what she says about her body, and adjusts from there. She even attended a meeting with our school yesterday. (more on that later) On top of her just being plain wonderful, she is close-by, which has been such a blessing considering we've now gone to PT for 11 times (if my count is correct). After going twice a week, practicing at home, bracing, and skipping recess and gym, we still aren't close to done. While it would be easy to get depressed over this fact, I am not. I am just too happy over finding another great member to add to our team - someone who my daughter enjoys working with, and who I respect and trust. It's amazing how big of a difference that can make in your attitude when dealing with long-term medical issues!

So - I've videoed a few of the exercises that the PT has been doing with Bug. There are many others to video, but it's hard to do as I need to spot Bug. ;) I'll try to do some more as I can, and I'll try to post some of what I have here later tonight. In the meantime, the main issue we are having is her ankle is still weak. She has a very hard time maintaining control of it, and she doesn't usually last more than 10 reps of anything. Most things she has a hard time getting to 10 movements correctly. One example is kicking a beach ball while keeping her ankle straight. It sounds so easy but it is hard for her. Her left foot does so much better than the right...

Right now I am not sure how much longer it is going to take to get her ankle healthy. I'm not sure if the PT knows yet either. Right now she still needs it braced, and her activities limited. (more on that when I write about school) The PT has also been working with her on her posture, balance, and her hips/abs a little. It seems like the list of what we could be working on is endless - and I'm not sure what we should be doing in the "big picture". However, I am happy to have a PT who is looking at Bug's whole body and not just the ankle we came in for. I am hoping we can continue to work on the other things as well because I really think Bug's best chance at a happy, healthy young adulthood is going to depend on having strong muscles to help her joints. At least I can hope that good muscle strength will help!

I just LOVE this video - it makes me smile every time I see it. For some reason I find it even funnier now considering I'm using it in a post on physical therapy. I must have a crazy sense of humor!



So, here's the update. Things had been going along just fine until right after Valentine's Day. The suddenly Bug started falling. The first few times it was once or twice, then last Tuesday she fell four times in one day, the final fall causing ankle swelling. That's when the light bulb went off and I thought "Hey - this isn't right!". Yes, sometimes I can be slow like that. ;)

We put her back in her AirCast ankle splint from her sprain last October, and sent her to school with instructions to not do PE or recess. I called the geneticist and they recommended she start back to PT to try to get some stability back in that ankle. Bug was also complaining of her hips being sore (front and back, both sides of her body), pain/discomfort behind both knees, and then her ankle on the right side. Her description to me was that it "feels like the bones are disconnecting". Which of these areas is the root problem I don't know, it could be a chain effect or it could just be all of them flaring up at once. The thing that was hard for me is that she describes it as if this has been going on (the pain) but it wasn't until she's falling down that she mentions it to me. So I'm left trying to figure out if there is an ongoing problem that she just doesn't complain about because it's now "normal" to her, or if she feels like it's been going on for a long time when really it's only been a week or two. She's gotten to where she hates me asking "too many questions", but at the same time I have a hard time knowing how to help her without asking. Ack!

Anyway... today we saw a local PT who seemed really nice. I decided I would rather try to find someone local who would be willing to learn about Ehlers-Danlos Syndrome than to try driving up to Iowa City again as we can and have less availability for therapy. I really like her so far, she was excited that we brought some articles in, she took a lot of notes, and wanted to talk to our old PT as well as the school PT. She also gave me her e-mail to send along more information on EDS. The icing on the cake was when she requested that we not start treatment until she met with us next, because she wanted to do some more research and talk to some people before doing anything with Bug, just to be safe. WOW! So, we head back Thursday to figure out what next. In the meantime, Bug is out of PE and recess again this week, and maybe longer. She's bummed, but hopefully she can do something fun but quiet during those times this week. I'm going to send in UNO tomorrow and have her ask her teacher if she can have a friend stay and play it with her so that it still feels like she is getting a break, but she isn't tempted to crawl on the floor and play.

Anyway, I'm not sure what lies ahead, but I am thinking/hoping we have found another helpful person to guide us through. It would be wonderful if this works out and we have someone local for anytime Bug needs PT or if we need advice on activities for her. I'm crossing my fingers!

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!

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!)

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!