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!

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!!!!!!!!!!!!

Well, Bug fell asleep last night still icing her ankle. That was 2.5 hours after I first learned of the pain. My husband ended up carrying her up to bed as she still couldn't/wouldn't put any weight on it.

When she got up this morning she was still in pain, but not as much. We had her put her old ankle brace on (because of your feedback), and sent her to school limping while crossing our fingers she would be okay. She iced it a couple of times at school, skipped PE, and she said "all of a sudden it felt better" sometime in the afternoon. I pressed her on if it was that she noticed it felt better, or if it suddenly felt better. She insisted that it suddenly felt better and got mad at me for asking. (you know, the "leave me alone I've already told you Mom" kind of mad)

Since then she hasn't complained once, and is happy as a clam. I'm still waiting to hear back from the PT, but I'm SO happy she's better!!!

Tonight has brought more ankle problems. Here is the letter I just finished e-mailing to the PT.


"Tonight Bug's ankle started hurting her really badly. At the time it started she says she was sitting down. However, I know that she was going from sitting to standing over and over during play practice, and since I wasn't there I cannot be 100% sure when exactly it happened.

Anyway, when I arrived I could tell something wasn't right by her face. When she came over, she was hopping. I sat her down and removed her brace and asked where the pain was. As she was showing me, something popped (not audibly). That was the first 'pop' she felt, she had not felt one prior to the pain. She said the pop was not in the exact same location as the pain, but in that area. It did not make the pain any better, if anything it made it worse. I ended up carrying her down several flights of stairs and across the parking lot. Trying to get into her seat in the car she fell. Then when we got home, my husband got her out of the car and carried her into the house and laid her on the couch. Currently she is lying with her ankle up and icing, and I will give her some ibuprofen before bed too. It's been almost an hour since I first saw her and learned of the problem, and she's still in pain. :( Hopefully it will work its way out soon.

Anyway, I wanted to send you an image pointing to where the pain is at. To me, it means nothing, but I am hoping it makes sense to you.

My other reason for writing you is because we just got her new brace on Friday, and today is her first full 'normal' day in it. I'm wondering if the brace could have anything to do with what's going on? I know it is comfortable, but is there any chance it isn't supportive enough? Or is it just a fluke? Here's the brace we got:
http://medspec.com/OnlineProducts.cfm?ID=1

Thank you for any input!!! "

So guys, here's the image:



Any thoughts? In the past her ankle pain has been more on the outside. I am at a loss here...

Yippee!

Bug and I drove 45 minutes today to try on new ankle braces. Guess what? The very first one fit perfectly, and she LOVED it! She was all smiles, didn't complain once, and I said to the guy "see, I told you that she's a good kid!". He agreed.

The difference between our experience today and the one a couple of weeks ago is night and day. I cannot believe what a difference it can make just having a different employee!!! Of course, this one was the manager of a couple of locations, but still. Not only was he nice, he actually talked to Bug directly, and, had her walk around in it for a period of time. The other guy never even had her get off of the table to see how it felt.

So - it was worth the drive!!!

Here's what she got:
ASO Ankle Stabilizing Orthosis

She also tried on one like something like this:
ProCare Lace-Up Ankle Brace . It was funny, because when we got home she told me that the second brace felt like she was wearing a boot even though she had a shoe on. :)

Anyway, she is SO happy, and so am I. I don't need to try to figure out if we can find a new brace, worry about who to order it, or if it will work well. She's got one that fits like a glove and all that's left is getting the decorations on. Woo-Hoo!

So - after my rant I went to work to get things fixed for my darling daughter. I called my contact at Blue Cross, Blue Shield first thing the next morning and told her what had happened. She was appalled. She hardly let me finish the story before she was telling me she was calling the president of the prosthetics company to tell him what had happened. Sure enough, ten minutes later she called me back to say she had everything being worked out, they were sorry, and someone who was competent was going to be calling to take care of Bug. Five minutes later, my phone rang again and it was the head of a different branch of that company. He apologized, and I told him that it was Bug that dissevered the apology. She was the one who was treated like a spoiled kid, she was the one who has been in therapy for 2 years for medical anxiety, and she was the one who knew darn well if a brace fit correctly or not. He apologized some more, and then got some additional information from me so he could search for some lace-up ankle brace options for Bug. He promised to order multiple styles so that she could come and try them on and see what was comfortable - which is what would happen for an adult. He also promised to open the store up after hours if that was what it took for us to be able to make it there without missing more school. I felt good about the conversation, and am waiting for my follow-up phone call that was supposed to be here no later than today. If I don't hear anything tomorrow morning I'll give him a call and check-in (nicely), and go from there. I know my insurance contact will help me out if I need it, but I am hoping we're good from here. I felt like this new person was much more sincere.

So - in anticipation of the new brace, Bug and I went shopping for decorations. I knew she wasn't very happy about the idea of the lace-up, thanks to Mr. Crabby employee. She now thinks they all hurt, which they shouldn't, and so I'm doing my best to convince her that it will be fine. Part of that was going shopping at Hobby Lobby and getting decorations for the new brace. We got an assortment of things, the ones I'm most excited about are the charms. She picked out 12 charms to hang from the lace holes. I am not sure yet how I will attach them, since I don't know what her brace will look like. But I'm sure I can make it work. ;) We also got several iron-on patches to apply, and she surprised me by bypassing the sparkly, girly stuff and going for a patriotic theme! I guess I shouldn't be surprised, since she seems to be emotionally mature beyond her years. Many of the charms she selected were religious, the rest animals. It should be mentioned that she wants to be an animal rescuer when she grows up. So I guess every aspect of her new brace is symbolic, which is pretty darn cool and way "deeper" than the generic girlie stuff I initially thought of. :)

Also, when I spoke with my insurance contact she understood right off the bat that this brace was long-term and we will be needing more of them. She offered to order more than one immediately, but I suggested waiting to see how it holds up and fits, because she is still growing a lot. So, we should have no problems ordering a second of the same, or a new one when she grows. Yippee! She also gave me a direct number to the person in charge of complicated cases or something, so that Bugs PT can call and get straightened out our ongoing PT services. This way we don't have to continue to worry about them running out. Another huge bonus! I tell you, it is all who you talk to, not the insurance company itself. If you have a good contact, ask for their name and extension, it can save you so much time and energy! It took me so long to get ours, but the time, stress, and time has been worth it thousands of times over already. (yes, I meant to say time twice. LOL)

I'll update when Bug gets the call to try on braces, all are supposed to be pediatric size, so it should be interesting to see how they feel!

First of all, I just wanted to say THANK YOU to all of those who have left comments on my last post, and posts prior to this. I rarely respond, but I always read them. I often feel like this blog is every bit as much therapy for me as it is medical notes, or sharing to let others know they are not alone. While I would never wish Ehlers-Danlos on anyone, or on any one's child, there is so much comfort in knowing there are others out there, reading along, living this journey with Bug and I. I apologize for not responding when I probably should, but so often if I have the time and energy to write I try to do an entire post. However, it means so much to me to know you are all there cheering us on!

Now - on to the good part of our appointment last week!

Our new Orthopedist was AWESOME! He was everything I was hoping for and more. He spoke directly to Bug, got most of his information from her, used me to fill in the blanks or to verify. He is very familiar with EDS, and spoke highly of Bugs geneticist. He said the same thing that she had, that they have mutual respect for each other and often refer patients back and forth. He explained that he is the "go to" for pain that is sharp, or that continues on a regular basis. He also is the person to call if we think we need a brace or splint. Should we ever get to the point of surgery, he's also our guy.

Dr. George Phillips is his name, and he can be seen in the Sports Medicine Clinic (where we saw him) or in the pedi clinic. We are going to use him as a pediatrician to kind of "be the head of our team" and have our new patient appointment with him in June. I am SO excited to find someone who knows about EDS to be Bug's primary doctor. It's just a huge bonus that he will also be her ortho. :) Finally, we will be able to use our local doctor just for flu and colds, and have a pedi for her check-ups and other issues that in the past I have had a hard time deciding on who to call or how concerned to be. I am hoping and praying that this will lift a huge burden from me and help Bug get the care that she really needs, even if it's just because he knows who to send us to and when.

The other stuff I learned was that our PT looks to be long-term. He said that it's great we are going down to weekly visits, but to plan on that for awhile. Then we'll drop to every other week, then once a month, then every other month. He said right off the bat "let me guess, she's made progress but very slowly". Exactly! It was great not having to explain that! He said that is normal for EDS, and it doesn't surprise him at all the kinds of problems that Bug is having. He also wasn't surprised that it was hips last year, then ankles and knees now. He expects that as she grows she will have more problems. He didn't make a big deal about it, but he was matter-of-fact. Again, it was such a relief to hear someone talk so openly and honestly without trying to shield us from "bad news". I can handle knowing what to expect, I cannot handle the unknown. I can always hope for better, and work to keep things from going wrong. How can you do that if you don't have any idea what is likely to happen? So - he pretty much said keep up the PT, don't expect to be done with it soon, and keep a long-term PT plan going to help catch future problems.

In addition to that, Bug will be getting a new lace-up brace for her right ankle. This will be a long-term thing, although I don't know how long-term. Somehow we didn't talk about that, so I need to ask when I see him as her pedi. He did say that he was able to feel the problems in both ankles with his fingers. Weird - I didn't know you could do that. So, Bug will be getting a new brace sometime soon and she is aware it will be long-term. (I have another post on the brace too)

So - I cannot say enough good things about our new Doctor. He had a great bedside manner, knew a lot about Ehlers-Danlos Syndrome, was thoughtful and honest. Bug adored him, so what more can I ask?

Warning - this post is only complaining, ranting, and worse. If you don't want to hear it, wait for my follow-up with the good parts of the day.....

You know what I hate? I hate people who talk to my daughter like she is stupid. My daughter is smart, funny, and very good about trying to explain what is going on with her body. Any person or Dr. who takes a few minutes and speaks directly to her (instead of me) realizes it, but unfortunately there are still some !#@!%$ out there who treat her like she's a spoiled brat.

Today, it happened again. And I'm freakin' livid.

After Bugs orthopedist appointment they sent in an employee who works for a medical supply company I will not name right now to help get her a lace-up ankle brace. Until this point Bug has been fine with that idea. Enter employee X, who starts off by saying, "I hear you need a lace-up brace" (looking at me the whole time, but talking to my daughter). "We don't have anything smaller than a women's 5-6, but I think we can make it work." "Otherwise, we'll have to see about ordering something". Bug and I are still ok at this point, although I'm a bit concerned about the size of the brace since she is just hitting a children's 4. But whatever, trying it on can't hurt anyone. So, he puts it on, and as he is getting near the top of the brace Bug starts complaining that it hurts, it doesn't feel good, etc. He jumps up and says "I'll go get the papers" and leaves. I go over and loosen the laces, adjust the Velcro some, and ask Bug if it's any better. She still says no. Now she's starting to get upset because it doesn't feel right and it's still on. I asked her to walk around, just to be sure, promising we'd take it off afterward if it still wasn't right. She walks some, complains more, and we take it off. She insists it doesn't fit correctly, and that we need something else.

Enter employee X again, this time with a ton of papers he's expecting me to sign. "It doesn't feel good, she wants to try something else" I told him. He looked at me in a not so nice way and said "This is all we have". Before I could say anything else Bug chimes in "I don't like the laces" and he says to her "well, that's what you have to have, that's what the Dr. ordered." I am really getting PO'd now, not only because of what he's saying, or the looks he's giving, but his tone. His tone was a "I don't care what you think, you don't know anything, you're a spoiled kid" tone.

I told him a lace-up brace was fine, but THIS lace-up brace wasn't going to work, my daughter said didn't fit comfortably. He said "Well then, you're going to have to find something else, because this is all we have"! Then he turned around and marched out of our room. I was really really mad now. Seconds later employee X returned and tossed Bugs prescription for the brace on the table with a "You're going to need this" and rushed out again. (What, no mail order like he mentioned before? Darn, how sad for us)

GRRRRRRRRRRRRRRRRRRR

My daughter deserves to be treated like she knows what she is talking about until she proves otherwise, or, I say otherwise! I don't care that she is 8 - she knows her body better than anyone! I bet that guy had never even tried on the brace he was trying to make her wear. I can almost guarantee he has not been forced by someone who doesn't know him to wear an improper-fitting brace. How dare he treat my daughter like that, who has been through plenty in her life already.... She's been happily wearing those ring splints for 3 1/2 years now, no complaints. She's worn her current Air Cast ankle brace for three months straight with not a peep. She knows if something fits correctly or not. Shame on him for assuming she was being a brat and I was letting her be one.

So - after Bug and I left I asked her how she liked her new Dr. She liked him. I asked how she liked the nurse. She liked her. I asked her how she liked the brace guy, and she just looked at me with "the look". The look was the one that said "I have nothing nice to say so I'm not saying anything". LOL So I said, "I didn't think he was very nice." She emphatically agreed. So I promised her that we would never see him again. She smiled. Hopefully that helped smooth over what had happened. I just hope now that I can still get her to try the other lace braces on, and that I can get my hands on several for her to even try! No one in the area carries sizes small enough, they are all special order. So, I'm calling our insurance contact tomorrow to see what our options are. I'm hoping she can help us out so we can move on and not have to worry about the brace anymore.

I'm taking a deep breath now, thinking about Karma, trying to let it all go and relax a bit. But boy do I wish that people could walk a mile in my daughters shoes sometimes! Not to punish them, but to give them a small bit of understanding and insight into her world.

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!

I cannot believe that I have not posted since August - but I just didn't feel like blogging. Then suddenly today I felt like sharing again, so here I am.

Let's see, since my last post Bug turned 8 (WOW - she was diagnosed at 5), she started 3rd grade, we did lots of fun family stuff and she's now completed her first quarter at school. Report cards and teacher conferences will be next week. Gosh, time flies!

She is doing well in school. The PT and OT are still seeing her although I'm not sure how much. She is involved in Girl Scouts, taking vocal lessons, and she is about to finish her "cheerleading" class. It is very low key, no jumping or gymnastics type of stuff. Just chanting and clapping. She is asking to take swim lessons again, but she also wants to go to the after-school program at church, so I just don't know how we could fit all of that in! I am happy that she is involved and finding activities that she enjoys and are healthy for her.

Now the not as fun stuff. She sprained her ankle in gym class a week ago, by tripping on the floor. Whoops! :) I think most EDS'ers see the humor in that. EDS'ers tend to be a bit less coordinated than the general population. So, she's in an air cast splint until the end of this week. It seems to be healing up nicely and she is now walking "normally" on it again.

As some of you know we're having some issues with her speaking up for herself and her needs. She didn't ask for any ice when she injured herself, even though she was hopping around all day at school. The teachers thought she was fine because she didn't complain, which she wasn't. I did speak to her main teacher the next day briefly and let her know that Bug isn't a complainer, but I also spoke to my daughter and stressed it was up to her to take care of her needs. That she should always ice any injury. I thought she got it, but then two days later she had another incident.

Bug came home and was telling me how badly she had to go to the bathroom at school, but that she couldn't because she'd loose a "coupon". I asked if it was close to recess (when they wouldn't loose one) and she said no, she had to wait a long time. Upon further questioning, I found out that she didn't even ask the teacher to go, she was just assuming that because that is what the teacher had said to the class in general at the beginning of the school year that it also applied to her. I explained that she could go whenever she wanted because she has a Dr. note, and I asked if she wanted me to talk to her teacher. She got really upset and said NO!

So - I think we have a bit of an issue right now with not wanting to draw attention to herself, or wanting to make herself any more different than her peers. I suppose I knew it would happen at some point, but boy, it stinks. I can't follow her around everywhere making sure she gets ice packs and asks to go to the bathroom, but I finally have her off of miralax and I don't want to end up back on it. Ugh! Anyway, we are going to start going back to her therapist again and I am going to mention this and see what her thoughts are. I don't want to make a huge deal out of it but at the same time I want the door to be opened so that Bug can know she has someone to talk to about this stuff (besides me) as she gets older. I hate having to go to therapy, but at the same time I know if we don't deal with the medical anxiety now or the being "different" now there is a good chance it will only get worse as she gets older. But the having to leave school early and driving over an hour just for therapy sucks, even though I really like her therapist. Wahhh, listen to me complain. I should just be thankful we have a good therapist, right?

We are also in the process of trying to find acceptable clothes for winter, which isn't easy when you are looking for items that are easy to get over your head, pants without zippers or buttons, coats with easy zippers, etc. Plus, it has to be "trendy" because we're at that age. ;) I have managed to get two pairs of jeans that have no zippers or buttons which are very trendy (complete with sparkles on the pockets) but that's been it so far! I am going searching again tomorrow and hope to find some more clothes. If I can't she'll end up with several pairs of the same thing, which is better than not having any jeans. We're tired of living in sports pants/sweats.

So, overall things are going well. Sometime in the next month we should be having our IEP meeting and I'll get to hear what the plans are for the upcoming year. Should be fun, right???

Oh - I almost forgot! We see our new GI on Friday, so cross your fingers we all get along! Ok, I'm done now - for real! I'll try to update again soon!

This is more for my own note keeping, so sorry if it's boring. :)

Bug has had horrible tummy pain both last night and tonight. I suspected that it came from the snow cone she had at vacation bible camp last night, so I warned her tonight that it might be the problem and to try another flavor and we'll know for sure. Well, she had Blue Raspberry last night and tonight it was Cherry. Both had the same result. About 15 minutes after finishing her treat she had horrible pain in her right side, just under the rib cage. On top of that, she was telling me her tongue was numb after eating it. I looked in her mouth and it did not look swollen. I ran my finger along the top and she said she couldn't feel it. Then I scraped it a few times and she still couldn't feel it. (according to her) I kind of pushed my nail down on her tongue and she went "ow"! so she felt that. She told me it must be because of the snow cone being cold, but her tongue did not feel at all chilly and it had been over 30 minutes since she finished her treat. I'm a bit concerned and will bring it up at the allergy appointment in just over a week. We already have an epi-pen for her due to tongue itching and swelling in the past, but we still don't know anything about what caused it. So, maybe this will help us get a step closer to some answers. Of course, maybe tongue numbing means nothing, I just don't know.

Back to the stomach pain. We could not get rid of it last night. She drank a lot of water, had a small snack, and just whimpered in pain until she finally fell asleep. She still felt off this morning when she woke, but after getting up and eating (and having more medicine) she felt better and headed to school. This is different than most of the pain we've been having in recent months. Usually the pain is above the belly button but below the sternum. Sometimes it is around the belly button or goes up above the sternum. Again, I think this might be important for our GI appointment so I want to write it down while it's fresh in my head.

Also, she has complained a lot more about feeling like things are "popping" this summer. Those are her words, not mine. This is a 7 year old, so what a pop is to me might not be at all what she is talking about. That makes it tough. On top of that, she gets upset if I ask too many questions sometimes, because she feels I should know what she is talking about - that she is being perfectly clear. LOL So - all I know is that sometimes she hears a pop (as do I) and there is pain at the same time and after. Other times she says she pops but I don't hear it, and she says she feels and hears it (and it is hurting). If that is the case, then the pop isn't very loud. And of course, there are times when she pops and we hear it and there is no pain. She's had popping in her knees more recently, her foot/ankle?, shoulder, and elbow. Those are the places that I can remember right now. I think they are the most common.

Luckily, her hips seem to be pretty happy right now. I think we've only had one minor flare-up since she did her physical therapy last winter. Woo-hoo!

Another thing I want to remember. She seems to have regressed with being able to get her shirts on and off by herself. She has better luck getting them on, but still struggles with that. Getting them off by herself is rare these days. I don't know what to do about it other than talk to her PT when school starts and see what her thoughts are. It still amazes me how quickly she looses a skill set if it isn't practiced every day! With the shirts it seems to be the difference between the loose fitting shirts of winter and the more form fitting shirts she has been wearing over the summer. Just that difference in clothing has made it very hard for her to change her shirts.

Anyway, I think that's the bulk of it for now. Ehlers-Danlos Syndrome is such a complicated condition!!!!