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)
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.
I find myself constantly trying to figure out which of Bugs medical issues is the root problem, and which ones are fallout from that. Currently we are dealing with headaches and sore throats again, which could be from the following:
Acid Reflux. Burns the throat and can cause headaches in some people. On meds, but maybe they aren't working?
Allergies. Boogers. Goo. Drainage. Yum... But wait! She's already on meds and nasal spray... Hummmm....
Sinus Infection. Same as above, but she just finished antibiotics for it, so is it still there or is this something different????
Virus. Can mimic colds and sinus infections and what not.
Something else. I'm sure there are more options out there - but let's hope we don't need to look at them.
Maybe this doesn't seem like a big deal, but the fact of the matter is that Bug has had headaches and sore throats (and fatigue) off and on for a couple of months now. The first time it was also with a cough and stomach ache, and she was diagnosed with laryngitis and bronchitis. She took antibiotics, felt better, then got sick again about 10 days after finishing the meds. She had almost identical symptoms this time around. (note to self, her voice never sounded affected, just sore throat and neck soreness on the outside too) About 15 days after finishing that round of antibiotics she wasn't feeling well again. This time it was headaches, seeing "spots" (she says she sees these on a regular basis - need to ask again when she's feeling well), and sore throat. New DX - a sinus infection. More antibiotics. Now only 1 day after stopping them she's complaining again.
Who has the answer? What is the answer? Is she just having bad luck this year? Are her meds for the reflux or allergies no longer working? How is it all tied together? It is even tied together? Oh, and then there is the fatigue. She's been really worn down. Is it from this stuff, or is it from starting back to recess/PE?
I call this the Chicken and the Egg Syndrome. In my mind when I think of not knowing which came first I always hear the background music to "which came first, the chicken or the egg" from Sesame Street. So, tonight while I was sitting here pondering how to handle my daughter's ailments, I decided to see if I could find that song online. I did! So, for your enjoyment, I present the really old grainy Sesame Street clip of the chicken and the egg. I hope you enjoy it some too - and maybe next time you can't figure out which of your child's symptoms is the most important or the cause of another one, you too will think of this silly tune!
While this isn't directly related to EDS in ways it is. You see, one of the things I worry about is my daughter's dreams. Will she be able to accomplish whatever it is she dreams of doing? I know other parents with Ehlers-Danlos Children wonder the same thing.
When I saw this video today, I actually started crying. It's from the British show "Britains Got Talent". It's a clip of a 47 year old woman who goes up and starts talking about how shes always dreamed of being a singer, and when asked why she isn't one she says she's never had a chance until now. You can see on everyone's face how they don't expect much out of her, but then she opens her mouth and begins to sing "I Dreamed a Dream" from Les Miserables. You have to listen to the entire clip - I did three times so far.
It's not like I haven't heard this song before; Les Mis was the first musical I ever saw and it continues to be my favorite 20 years later. We've seen it many times and the music is on our iPods. Bug has even been learning "Castle on a Cloud" at her vocal lessons. What makes this so magical for me is the raw, undiscovered talent that has been hiding in this woman for so many years, just waiting for the right time to come out. She didn't give-up on her dreams, she wasn't afraid to take a risk, and to top it all of the song choice was just perfect for both her vocally and the lyrics were so fitting too.
She was a wonderful reminder that my Bug's dreams might take longer to acheive, and they might need adjusted, but she can still have them and accomplish them if she waits for the right time and place.
Rock on Susan Boyle!
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!