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!

Today started out as a great day, Bug was going to go window shopping with Grandma and I to show us what she was wanting for her birthday. It's not for a couple more weeks, but her Grandparents wanted to celebrate with her while we are here in town. We started at Old Navy, and then needed to make a decision on lunch. Since it was Bugs special day, we asked her where she wanted to go. She just couldn't decide, and kept saying things like "normally I'd want Panera, but I can't have my favorite soup" and "I love Frappuccino's, but they have milk". Finally Grandma had a great idea to go to the Rainforest Cafe (Bug had never been there) and so we just went. Although she enjoyed the animals, she wasn't her normal cheerful self. Being that it was in the mall, we stopped in a couple of stores right next to it and then started walking to the main area of the mall. Bug just wasn't happy, and kept lagging behind. My Mom and I wanted to stop in a store and browse clothes for a couple of minutes, and she didn't want to. I made her come and stand inside, while I had a quick look. Normally I would have skipped the store, but I have to attend a business party on Saturday with my husband and didn't pack anything to wear. (duh) Anyway...

We continued about three more stores down, and stopped to get a directory. Bug sat next to me on a bench, and my Mom went to sit next to her. Bug got up and sat on the other side of me, which apparently offended Grandma. At that point Grandma announced that it was obvious that Bug wasn't having fun, and she wasn't having fun, so we should just leave. Bug said she didn't want to go home, but that's what we did.

Grandma gave Bug a lecture in the car about how it was obvious Bug was upset with her, and that was fine, but that we shouldn't be shopping if we were unhappy and when she was happy we could go back out. I just didn't say anything and neither did Bug. When we got back she went down to play with her brother, and I slept for a half hour. (escaping reality? LOL)

While I understand where my Mother was coming from, I also think I understand Bug. This was our first shopping trip out since going dairy-free, and she was upset because the things we traditionally do on those trips she couldn't. We make a big production about going to Iowa City to counter the fact it's to see Dr's. So we go shopping, to Panera (for broccoli cheese soup), and get a Frappuccino. We always do it. She looks forward to it, and it's taken us a long time to even find a place she would eat. (she won't eat so many foods) Being a vegetarian in a meat eaters world, I think I know how she felt. There are times I get grumpy because we are going out and I know I won't get to enjoy where we're going. It's especially upsetting when you don't get to go out often.

What stunk was how it all played out. In some ways I felt bad because I wasn't prepared for this. I didn't think about it ahead of time and have a plan. I could have just picked somewhere and not even asked her, which I do think would have helped. But - I'm still getting used to this too. Also, I do wish my Mom had dealt a little better. She just gave-up, and assumed that Bug was bitter that we went into a store she didn't want to go into. While there might be some truth in that, it wasn't the main reason. At least I don't think so.

Of course, I could be wrong. Every kid has their moments. I guess that's why I didn't say anything when Grandma had her lecture. I just let it play out. The truth of the matter is that it really doesn't matter what I think. Other people are going to see what they want to see or are used to seeing. Unfortunately, this means that Bug might get lots of lectures that she might not really need. So am I doing her a favor by letting it play out (safely) now so she knows how to cope, or am I letting her down by not sticking up for her? Grandma wasn't mean-spirited, but what she said was hard hitting on its own.

What a fine line it is balancing between living life as a "normal" person and protecting my daughter because she isn't "normal". While food was the problem today, tomorrow it might be an invisible ache, or just general fatigue. I know Bug is in the process of learning a big life lesson right now, that life isn't fair. That she is different. And that while sometimes it is ok to feel sorry for yourself, you then have a choice to make - to hide in a corner and let life pass you by or to put your chin-up and live for all of the other wonderful things God has given you. I can only hope and pray that she will choose to fight and see the good, and that I can be strong enough to set that example for her.

So, tonight we talked about making choices to move on after we feel bad. I think she understood and I hope she'll be able to talk to me about things like this in the future instead of just getting grumpy. And most importantly, I hope that she knows that above all else I love her and am on her side, even on the "bad" days. :)

I'm tired of blogging and complaining, but gosh, I am so tired of people not understanding. Now, in their defense, Ehlers-Danlos Syndrome is not the easiest thing to understand. But why when information is available, or when I've even given it do they still not believe??? Or understand? Or question what the experts say?

Yesterday Bug came home from school around 1:30. I got the call around 1 that she had been complaining all morning about her stomach and head hurting. She spent most of the morning in her bean bag chair. However, at lunch recess the teacher saw her running around playing like nothing was wrong. When recess was over, she came inside and started complaining again and was sent to the office to get her temp taken and rest.

Her temp was normal, and they had her rest for about 20 minutes and then called me not knowing what to do. I said keep her another 15, and I'll call back. So I waited 15 minutes and then went to the school to check-in. Bug was still in the office, laying on the cot. She was not on the camping pad the OT left for her at the beginning of the year, nor did she have her pillow which I had left for her at the same time. The agreement at the beginning of the year was that she could use these things when she didn't feel well because we had a theory that it wasn't just rest that helped, but rest in a comfortable spot. In their defense, the office lady was at lunch and the person in there likely didn't know, and with a tummy ache I doubt they would have thought comfortable rest would have helped anyway....

So, I talked to Bug and it was the classic "all over" tummy ache we always get, so I just took her home. She spent the next 3 hours resting on the couch, snacking some (something she often does when her tummy hurts) and not even talking. As more time went by, she started perking up some and by bedtime she was "normal again."

In the meantime her GI had called me regarding the e-mail follow-up I had sent a week ago. He told me he wants us to try dairy-free for 3-5 days and see if that stops some of this. I went through her symptoms again with him (the fact that this goes in spurts, and once it starts we have a rough week or two and then we're good again, and that it isn't all day, but part of the day, etc). He said once again that is normal with the GERD. We're going dairy-free to see if it changes anything just in case she has some IBS going on too. We don't think so, but at this point it doesn't hurt to try. (another reason I love him - he's not just pushing surgery, he's trying any and everything with us!) If that doesn't work we're upping her fiber for a week to see if that works. Then we check-in again with him to see if he has any new ideas before our visit in April.

Anyway... Today I stopped in Bug's room to tell her teacher no milk, and she mentions yesterday and how maybe it was anxiety or something. She just couldn't understand why Bug would go and play at recess when she was so ill. I didn't know what to say, except 1) she's a kid, and she doesn't get to play much 2) the pain comes and goes and 3) if it is being made worse by milk, she had just eaten milk right before school and then again at lunch. Which means it could have been flaring up because of that. Regardless, I just felt like she didn't much believe it was "real" - even mentioning that another girl was doing something similar that day. Well - I LOVE her teacher - she is the best! But it is real - we dealt with this last year at school a lot, we deal with it at home, and the tests from the Dr's show it. (the GERD) Why do people assume that because she doesn't complain and you can't see it she isn't ill????????? We all work so hard to make her feel "normal", and to teach her to be in charge of her own body and we encourage her to meet her own needs. Why is the immediate assumption that she is faking not feeling well - or that on a daily basis I am the one making up these problems because she isn't talking about them 24/7???

Should I be teaching her to complain non-stop and feel sorry for herself? I think not! But it seems that in order for everyone to "get it" that's what needs to happen. Of course, if she complained all of the time then she'd be the girl who cried wolf. No matter what, she gets the short end of the stick. Ugh.

I want her to feel good about her self and not harp on her body not feeling well. The fact of the matter is for her she often won't feel "normal". I don't want her to focus on that. I want her to focus on living and being a kid as much as possible. Not on her aches and pains. Yes, I need to know about them, but I like how we've got it worked out where she lets me know in a matter-of-fact way and the end of the night. We don't have long talks about it (unless something new crops up, or it is unusual or bad pain) it's just something she lets me know about. No different than a homework assignment or what she played at recess. The problem is that doing it that way does not allow the people in her daily life to hear her express these things from her, they only hear it from me. And for some reason, I'm not believable. I guess that makes the Dr's unbelievable as well, since the tests and notes backing it all up come from them.

Why people seem to think that I could go to all of the trouble to find these Dr's who are good enough to work at the University of Iowa but are dumb enough to be manipulated by a Mom who for some crazy reason wants to waste hours of time and worry on a kid people don't believe it sick gets to me. I would give almost anything to not have to do this. Do they have any idea what it is like to always be looking for the missing link between these problems we have? To have to have the stress of all of the medical appointments, the driving, the missing school, the inability to work out of the home if I wanted because I have this other stuff going on... Why would I want to worry about what sports or activities are safe for my child to play if I didn't have to? Why would I want to forbid her from things that every other child gets to do? Or worry about if she can go to someone's house because the parent knows what is and isn't safe for her to do - or how to administer her medications on time. You couldn't PAY ME ENOUGH to create a crazy-ass life like this for my daughter or myself. Period. And I am sick and tired of people not getting it, not understanding, not making efforts to educate themselves to better understand and just ASSUMING I like to do this to us.

Yes, I am angry. I am angry that not only does my daughter have to be different but that we have to fight for people to believe her. She hasn't done a damn thing to deserve that. She is sweet, kind, honest, and a heck of a trooper. If she says she feels like crap at school someone better believe her - because she feels like crap most days and doesn't say anything because that's the way her life is. That's bad enough - it just kills me that then people choose to not believe her when she actually does say something.

I love our school. I love her teachers. I love my friends, and our AEA. What I hate is that Ehlers-Danlos Syndrome is not only invisible, but it brings on even more invisible symptoms that people can't see. And our society in general doesn't believe what they can't see. Who cares what the medical Dr's say, or what the Mom says. If we can't see it, we don't believe it. Since when is that how we live our lives???????????????????

In some ways I am lucky- at least I'm not being accused of child abuse. Here's an article that was just written a few days ago about an Ehlers-Danlos Mom who had that happen. It's long, but worth the read.

Maternal Care- Or Harm?


Ok, I'm done complaining, at least for now. I know I've brought this all up before, but I had to do it again. It's not one person I'm upset with, it's society as a whole. I believe my daughter is loved and cared about at school even if they don't get it. I might not have that somewhere else. For that, I am thankful. I just wish I could make people more aware of EDS and how horrible it can be, and that we are not crazy!!!!!!!!!!!!!!

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!)

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

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

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

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

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

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

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

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

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

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