"Suffering the Slings and Arrows of Outrageous Fortune"

Posts tagged ‘homeschooling’

Recent Adventures

I seem to be apologizing for my absence a lot lately – my computer situation makes it challenging for me to post right now. But, there is hope on the horizon – my mother has generously donated to the Let’s Keep Beth Sane Foundation and is loaning us an unused desk top until we can get a new laptop. Now I just need to get it set up and running. (I hope everyone knows the Let’s Keep Beth Sane Foundation is a joke and not a serious request for donations, although, heaven knows, I could use a little help in that area!)

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Anyway, I will try to catch everyone up on what is going on:

The latest adventure (there is ALWAYS some type of adventure around here) is pretty typical. If September is Em’s month for dislocations, strains, bone contusions, etc, then late fall (October/ November) is her time  have some kind of eye emergency. Last time, a toddler punched her in the eye.

This time, that precious little kitten we so lovingly took in to our home smacked Em in the eye, claws out. Her claw caught Em’s upper eye lid and we worried that her claw went through the eye lid and scratched the eye, because her eye immediately started hurting and watering and her vision was off – she couldn’t focus and her eye was terribly sensitive. Of course, this happened after office hours so we waited out the night to see if it got better and, when it didn’t, called and got an appointment to see a doctor. (Ironically, we were in the same exam room that we were in last eye emergency. Alas, the friendly little puffer fish she made friends with was no longer swimming in the aquarium. She didn’t believe me when I said Nemo rescued him…)

It bears mentioning that her yearly appointment with the ophthalmologist was less than a week before. (The doc we liked moved, so we got a new one – we really like her and she even treats conversion insufficiency, so she is going to give us more info on that.) So, anyway, last week I paid a $40 co-pay to find out her eyes are fine and dandy, 20/20 vision in both eyes.

Then, we get to go back and pay another $40 co-pay less than a week later because the kitten tried to blind her. Fortunately, there was no scratch. But, apparently even the pressure of that tiny kitten paw was enough to cause problems. The tear film was disrupted, her cornea is dry and rough (she already has pretty severe dry eyes) and her vision was noticeably worse. She struggled to read the first line of letters during the exam. But, the good news is that it should heal on its own in a day or two, her vision should go back to normal and she can just increase her use of eye drops until it feels better.  And, it is better today and should continue to improve…

So, in September we shall wrap her in bubble wrap to prevent injury and in October and November she shall wear goggles to protect her eyes.

In other catching up news..

rainbow scroll She saw the GI doc – waste of time and money, but whatever. Half the time I doubt he even knows her diagnosis, but we just carry on. This time, he finally noticed (after multiple visits) that she is on Tramadol and thought it was for abdominal pain. He probably still does, although we did our best to explain it is for joint pain. He vigorously tried to convince us to take her off it, which, frankly, we were not buying. We smiled and nodded until he dropped it.

rainbow scrollSaw neurology for a follow up – spoke with him about Tramadol and he reassured us it is fine. We are increasing her dose of Lyrica because most of the time it is enough but she has enough days of pain that it seems wise to increase it. He is thrilled with her progress and said we don’t have to see him again for a year.

rainbow scrollEm went trick or treating with her bestie. Yes, she is entirely too old to trick or treat but, you know, she is almost 16 and she had never gone without me. When she was 10 and had just dislocated her knee, she was on crutches and I went with her. When she was 11, she was in a wheelchair, very ill and getting worse, so just she and I went to a few houses and that did her in. When she was 12, we went with a group of friends – her in her wheelchair, some of our friends even pushed her. When she was 13, we went with some of the same friends, again, her in her wheelchair. When she was 14, she didn’t go – just stayed home and passed out candy (and tortured the dogs by forcing them to be in costumes).

So, now at 15, she was able to walk with her friend after planning their costumes for weeks: she got to be a normal kid. Yes, that planning included negotiations over what boots would go with the costume but not hurt her feet or knees. Yes, that planning included worrying over whether her costume would be warm enough, then when it was sunny and warm that day (our county does T or T on Sunday afternoon – sounds weird but is actually awesome because it is safe and warm and you can enjoy the kids costumes.) we were concerned she would be too warm. Yes, she planned her meds around the time she would be gone. But, the point is, she experienced normality and that is what mattered in the end.

And, while the girls were clearly ‘too old’ they certainly were not the oldest out that day, at least they actually put time and effort into dressing up, and they were polite: Em reported back that when they noticed people running out of candy, they gave back what they were given and told the people to save it for the little kids.

rainbow scroll We are working hard on the musical we are directing at our homeschool co-op. It is fun and hard work but we are both loving it. It is nice to see her doing something she excels at and loves.


rainbow scroll Malli[e], the snow white, angelic, innocent kitten who came to live with us… Let’s just say she has adjusted well to her new environment and rules it with all the enthusiasm a well fed, well loved kitten can muster. (Which is a lot.) She terrorizes our other pets, Padme and Sasha, who stoically tolerate her. She scratches at Em’s door all night long wanting in to play. She pounces on toes, fingers, computer cursors and letters being typed on the screen – anything that moves or ever thought of moving. She climbs the drapes. She ‘paper toweled’ my kitchen – similar to toilet papering only with a roll of paper towels. Use your imagination. And, then, of course, there is the Great Kitten Vs Eye incident of 2014.

But, she is adorable and part of the family, so we are stuck with and blessed by her simultaneously. I won’t lie, we all look at each other at least dozen times a day and ask, ‘whose idea was it to keep her?’ But, we wouldn’t part with her. Ever. Probably. Most likely…



Silver Linings…

Knee Update

Em had her MRI on Tuesday – we saw the doctor on Wednesday and got good news… the MRI showed that nothing is torn, so no surgery. He thinks the pop she heard was her patella being dislocated. So, while that explains the bruising, pain and instability, it is obviously long since back in place and now she just needs to heal up. On Wednesday when we saw the doctor, she was still in the wheelchair and in a lot of pain, although she had been able to bear weight on it intermittently over the weekend. Now she is bearing weight even without crutches and is just wearing a brace for stability.

We  were going to do PT, but at this point she is rapidly improving so her dad will probably just work with her at home and that will be good enough. She goes back in 4 weeks for a follow-up but I expect her to be fine by then. I am very, very relieved that we dodged yet another bullet and that she doesn’t have to go through another surgery.


I have mentioned numerous times that we are part of a homeschool co-op that meets on Fridays and I have a couple things I want to mention, things that fall in the category of how things just happen to work out in ways we don’t expect but end up just right…

This won’t surprise anyone but Em is at place where she would just prefer to pretend she is a normal girl most days. At co-op, she has done her level best to pull off that illusion for the first few weeks. With lots of new families who weren’t around when she was really sick, she can sort of pull it off…until, of course, she does her knee and has to have her knee in an immobilizer and use a wheelchair to get around. Inevitably that requires some explanation and I suppose it is good practice for the real world. My observation is that good things come when she is honest and open about her issues – I think she sees that as well, but it is still difficult for her.

The first neat thing that happened the week that she was in her wheelchair is that she made a friend. One of the families at Co-op recently adopted a little guy from India. He speaks enough English to get by but, no doubt, feels set apart as he is adjusting to his new life. Not because he is viewed as anything but a blessing but more so because he has some physical limitations.

I am not sure if his issues are congenital or from an accident, but the bottom line is that he is in a wheelchair, at least for now. So, when he saw Em wheel in, his eyes lit up and he went out of his way to talk to her. He was no longer the only kid in a wheelchair and that had to be special for him. It was special for Emily to know she had made him feel more at ease because she certainly still struggles with the feeling of being different. And he was impressed with the gloves she wears to prevent the wheels from tearing up her hands. 🙂

Sometime blessings come when you least expect them: Em felt so discouraged being in her chair again but she ended up making another child feel less alone. Funny how that works.

The second neat thing that happened is that Em was talking to one of the moms and discovered that this lady, Maria, has a sister with EDS.

That is an It’s a Small World moment on its own, but when we saw her the next week,  Maria said she mentioned to her sister about Emily wanting to connect. The funny thing is, the sister asked if Emily’s mom has a blog because she recognized the details, having been following it. [Waves to Maria’s sister 🙂 ]

It is a small world and EDS isn’t nearly as rare as we have been led to believe, but I am still amazed when we run into this type of thing. We got a good laugh out of the fact that we already had a connection with Maria’s sister and just didn’t know it!

So, while Em being injured is never good, it is always interesting to see what good can come of a bad situation. When it is storming and clouds are all around, you may as well look for the silver lining!





Can’t say nothing exciting ever happens…

Things have been chugging along pretty much as usual around here with Em, with not much of consequence to report recently. Then something happens to make us sit up and pay attention.

This weekend, we had some strange weather –  albeit not that  unusual in Ohio, where the motto could be ‘If you don’t like the weather, just wait 5 minutes’. We had a freezing rain/ rain/ snow mix that only lasted a few hours, but was certainly treacherous enough while it lasted.  (Bear with me, just setting the scene…) We had our Homeschool Co-op Open House on Saturday and were on our way to the church on the slushy, icy roads. As usual, Em and I both had prominent roles during the program and were dressed accordingly.

So, when we spun off the road, down into a ditch, through/over a wire fence and into a wooded area, it was not convenient, to say the least. My son was driving, I was in the front seat and Emily was in the back on the driver’s side.

Before you say, ‘Wait, wasn’t he just in an accident in February and totaled his car?’ let me just say this:  he was not being reckless at all. He was not speeding. He was not being stupid in any way. He didn’t overcorrect or jerk the wheel or slam on the brakes. One minute we were fine, the next minute we were spinning out. After much discussion and hand wringing and puzzling after the fact, we have sort of come to the conclusion that we hit a patch of black ice. My memory is that we suddenly jerked to the right and the back end spun around, sending us sliding  across the road and into the ditch.

Honestly, I do not believe that my husband, who grew up in northern Illinois and learned to drive as a matter of fact in weather that would shut down the state of Ohio, could have steered out of that. Luke’s memory is that he suddenly lost traction and could do nothing once the back end went. I have been told, that sounds like what happens with black ice – the shaded section of road we were on and the icing conditions were prime for the formation of black ice. Somehow, it makes me feel better to know it was almost unavoidable.

I cannot say that I would have done anything differently if I was driving. Once my parents came to us, I drove my mom and Emily on to the church, while my dad stayed with Luke – my husband was at work and couldn’t get home quickly. Driving on to the church, I realized Luke’s speed was not at all excessive – if I had been driving, I would have gone a similar speed – between 40 and 50.

So, my point is, to family and friends who are questioning Luke’s driving and judgement: I was with him. I am not stupid. It wasn’t his fault. Once we got to the church, we found out at least one family had started out and turned around because the roads were so bad. Several other people reported scary slides that almost took them off the road. There were other accidents at the same time. Accidents do happen and that is the best explanation we have. (I have to acknowledge that I was really mad and really scared at the time and was not very gracious to Luke about it. I have since apologized to him – he deserved my apology and I don’t mind making that public.)

On to Emily…

We are all ok. It was very scary, but we all had our seat belts on and just got bumped around a bit. Of course, Emily is particularly vulnerable  to being bumped around ‘just a bit’. We went on to the church and got through all of the performances, but she was falling apart physically and emotionally. By the time we got home, she was really feeling it.

  • Her whole left side is stiff and sore. Knee, hip, ribs, shoulder – all hurt and are just not quite right, which throws everything else out so everything is not right. The nerves are all inflamed and painful, which is really just the next step above her normal.
  • She thinks she hit her head on the window and then again fairly hard on the head rest, which is what it is there for obviously. There is no real bump or sore spot so she didn’t hit it too hard, I think. She might have had a very slight concussion, although it was hard to tell with her other stuff. She has so many symptoms that it is almost impossible to sift through them – she had blurred vision, headache, and dizziness afterwards but no nausea (or at least no abnormal nausea). That evening she talked about being confused and spacey and not able to think, but I think it was just the emotions of the day weighing her down. We hydrated her and got her to eat and she perked up quite a bit.
  • Her neck is messed up – so easy to do with EDS. It is stiff and sore. The muscles are all in spasm, trying to hold it all together. She has been wearing her hard collar, off and on, and that is helping. Clearly, her neck took a jolt and flared everything up.
  • Emotionally, she is pretty fragile. It was really scary and she will be feeling the effects of this for a while. Definitely did not help her anxiety! It is funny now, but not so funny at the time: As we sat in the car, where we had come to rest about 6 inches from a tree right behind Emily’s seat, she looked at me when I started freaking out about that and said, ‘You need to hold it together because I need to lose it. I need you to be strong for me.’ So, shamed by my 15 year old child, I pulled it together for her. Her grandmother and uncle helped get her to the point she could perform in the program and hold it together until we got home.

We are keeping a very close eye on her – she didn’t want to go to the ER and I don’t really blame her. There was nothing that prompted me to feel like we really needed to… Although, it would have been comforting to have her looked at and be told everything was fine, but what ER could honestly do that for her?

Yes, she is ‘fine’ by most medical standards. Nothing is broken. But, the subtlety of her injuries would not be seen or acknowledged, so it would be no help to go. If she had a concussion, it was so mild a doctor probably wouldn’t even call it a concussion or acknowledge it as such. Her neck is tweaked, but that is not going to show up on any x-rays or MRI. Yes, her nerves are screaming, but they were already screaming, so what more can be done? We could say her whole bendy spinal column took a shock and has exacerbated all of her preexisting symptoms, but what is a doctor going to do about that?

It will just take her time to recover. Her body needs to heal and recuperate and that will probably take considerably longer than the normal person. Her mind needs to absorb the fear and anxiety and deal with them. We will just keep an eye on her and if anything pops up, we will get her to the doctor.

Obviously, we are very thankful (AGAIN) that, while it could have been SOOOO much worse, it wasn’t and we are all, for all intents and purposes, fine.



Hanging in there…and having fun doing so

We have been busy, busy, busy with rehearsals for Sound of Music, with little time for anything else (like blog posts!). We finally are able to rehearse on the stage, so it is all becoming real and exciting, as it always does about this time in the creation of a show – props are being used, the music is coming together beautifully, set, costumes and tech are coming soon and, with each addition, the more real it gets.

It is  one of those things that we couldn’t even admit how much we missed until we got back to it – it is in our blood, I guess. I will be helping out backstage and however needed, since I will be there anyway and my husband has a small part (the nasty Herr Zeller), so it really is a family experience. The only one missing is our son, but, sadly, he has other obligations.

Em is both having a great time and is totally exhausted. From here on out, we will be having rehearsal every night – Sunday through Thursday. (And Homeschool Co-op on Fridays. Fortunately, this Friday is our last day of this semester and we wrap it all up with our Open House on Saturday.  Em and I both have classes that are performing, so once that is off our schedule, it will be a relief!)

Then there is Tech Week and at least 7 performances – they are talking about adding additional performances because of the interest and demand for tickets. Tiring for someone who struggles with pain and fatigue but worth it, because it has been so missed. Hopefully, we all still think it is worth it when all is said and done – praying that there are no lasting ill effects as we go through the final, exhausting phase of production.

It has been a joy to watch Em back at the theatre, singing, making friends, hanging out with girls her age and generally being normal. It is also a little sad to watch her on those evenings where she is just beyond exhausted and not feeling well, she withdraws and is quiet and clearly isn’t right. But, she is doing something we didn’t honestly know if she would ever be able to do, so we are just happy that she is able to be there.

Any general stab in the vague direction of normal is an accomplishment; what she is doing is far more than a wild swing at normal and it is a pure joy to see. Having ‘music fun’ (like hanging out with other people who appreciate music, like learning a bit of music theory, like singing in Latin, like being pushed to perform at the highest level – she is a sponge and welcomes the music director ‘cracking the whip’), laughing at the antics of the cast members who live for getting laughs, laughing with and learning from our great directorial staff, and, best of all, being a part of the cast and everything that goes with it – these are the things she has missed out on and is thoroughly enjoying.

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As I read over this, I realize that my waxing eloquent about it all is a little  funny – the whole thing is actually a gigantic pain in the butt: sitting around for hours for a few minutes on stage, twiddling your thumbs while the directors confer and make necessary tweaks now that we are on the stage, trying to avoid the viruses that use the cast as a petri dish, putting up with egos and kids and tired folks who are giving their time to make the show happen, staying until 9:30 or 10 and then driving 45 minutes home, spending hours at the theatre instead of preparing for Thanksgiving and Christmas…

This show is the theatre’s all important Christmas Show – always a feel-good, family favorite that is a staple in the community. Unfortunately, but fairly unsurprisingly, the Christmas Show happens during the holiday season, which means the cast devotes an enormous amount of time to the theatre, instead of say, shopping for groceries that their family might need to actually be able to eat or cleaning their house or preparing for Thanksgiving or shopping for Christmas presents or putting up Christmas decorations.

Now, I could be the only who struggles with all that but I don’t think so because there are plenty of folks who simply refuse to be a part of the Christmas show (read that as ‘folks who are actually sane’) but will do every other show on the schedule. Our family, well,  we are suckers for punishment and have almost always done the Christmas Show. Except, of course,  for the last 3 years, when Em was so sick.

Hence, both sentimentality about how great it is to be able to do it again and a forgetfulness akin to that which accompanies giving birth are at play in the waxing eloquent about the whole thing! Plus, even with all the annoyances and inconveniences, we just totally enjoy it and are happy to have all of the ‘annoyances’ to put up with and don’t really see them as annoyances 99% of the time. Plus, who doesn’t love The Sound of Music? Seriously. If that makes us crazy, so be it.

It is really hard to get worked up about the negatives when you are just so darn happy to be there in the first place!







Managing Life

Well, Em has had a couple weeks of rehearsal for The Sound of Music and, so far, all is well. Thus far she has only had rehearsal a couple times a week. She is pretty tired but is keeping up reasonably well with her home PT program, her school work and the classes she is teaching at our homeschool co-op on Fridays. She is a busy girl and enjoying life at the moment, albeit in an exhausted sort of way.

In the next few weeks, the rehearsal schedule will ramp up and hopefully she is able to manage that  too many ill effects. We know she is going to be fatigued, we know she will probably have more pain and probably more injuries/ dislocations…

BUT, the sheer joy she is getting from being involved in theatre again, from having that creative outlet, from reestablishing relationships and being able to sing in a group again far outweighs the problems and risks. This is such a moral boost for her; after 4 long years of darkness and suffering, it is hard to actually put in words how precious this time is.

[As she started rehearsals last week, I started doing the math and realized it had been  4 years since she was able to be in a play – 4 years ago, she was in The Homecoming, ironically with the same director, and, though it was a small role she had, she struggled. She had dislocated her knee that September, been in PT and been dismissed because the pain was increasing and she wasn’t making progress. She was off and on crutches that fall, the fatigue was worsening and the rest of her joints were starting to be a problem. At that time, we had no name for her symptoms; I had been told ‘it couldn’t be that’ – that weird condition that started with an ‘E’ and I couldn’t pronounce and the closest we had to a diagnosis was that she was ‘loosey goosey’. We were about 9 months away from being able to put a name to her condition and from life as we knew it changing completely.

On one hand, I can’t believe it has been 4 years since we have been in a play. On the other, the past 4 years have been a lifetime of change and growth and it could have been 400 years instead of only 4.

When I sit in on rehearsals and see the happiness and joy that has escaped her for so long, I feel so blessed and it makes all the hard times of the last 4 years worth it. There were times that I  thought this could never again be her reality – that she has this opportunity is a blessing and a joy and, no matter what the future holds, one that we will forever be thankful for.

You know, I didn’t mean to do anything but give a quick update on how Em is doing with her new activities, but I find that it is such an overwhelmingly good thing that I can’t help but look around in the present and back in time in wonder. And I am ever conscious of the folks who are reading this blog at a low and frightening time in their lives and the power that reading a hopeful story can have when your life is falling apart.]

So, anyway, things are going well and Em is managing everything she needs to manage pretty well – we have several upcoming doctor’s appointments and I will update with whatever we find out. I am particularly looking forward to seeing the geneticist next week and sharing what Em is up to since he saw her 6 months ago…. I think he will be pleasantly surprised!

Better Living Through Science!

Whew, we have been a little busy the last couple weeks – doing science!

Our homeschool co-op decided to have a science fair this spring and Em was determined to participate. She came up with a great project and had some great plans. Unfortunately, like most teens, she underestimated how long it would take to complete the project, so we were rushing to finish it up at the last minute. Unfortunately, UNLIKE most teens, she really struggled with fatigue and pain, and leaving things to the last minute can mean that things may not get done – once the tank is empty, there is no quick and easy way to fill it back up.

By the end of the week, she was absolutely exhausted, headachy, and stressed, which always results in worsening GI symptoms (a bad combo for her). But, she kept pushing and was able to present her project on Saturday, as well as perform with her guitar class at our Open House.  She is paying for it now, but it was a great experience that was worth it.

At some point this past week, amidst the rushing and requisite motherly chiding about time management, I realized that 2 short years ago, Em was essentially bed ridden and unable to function. There is no way she could have done the science fair or performed – as I recall, 2 years ago, she went to Open House for a little while in her wheelchair and headed home early. It was a miserable, scary time in which we were still desperately trying to cling to some sort of normalcy.

A year ago, she was better but was in a new round of headaches and was dealing with the side effects of the Diamox. We were struggling to get the dose right and get her CO2 levels in a good place. She was definitely better, but it was unnerving and frustrating to have the relapse. She went to Open House last year and it was a minor ordeal like everything was for her at the time.

So, this was quite an accomplishment and, time management issues aside, I was just thrilled that she is now able to participate more in her own life. It is sometimes hard to remember how far she has come.

Her science fair project also is a reminder of how far she has come. It was a classic with a very personal twist: Is Smiling Contagious…Even if you are in a wheelchair?  Being in a wheelchair has been a blessing and a curse for her and she is understandably sensitive about it. She hasn’t been in her wheelchair at all for several months and hasn’t even really used the scooter we got in the fall and she has been pretty darn happy about that! For her to include the wheelchair in a project was not a casual decision – it was a decision born of a willingness to take a painful situation and learn from it.

Her hypothesis was that smiling would be contagious, but that people would smile more when she was walking and least when she was in her wheelchair. After a week of wandering around Walmart, trying to make eye contact with people (which would label them as a ‘subject’ and which sounds much, MUCH easier than it actually was) she finally had to admit that people actually smile and are friendly when she is in her wheelchair…IF she is smiling herself.

If she made eye contact and didn’t smile, people were less likely to smile, although they still smiled more than people did when she was walking and not smiling.


  • 36% of subjects smiled when facing Em walking, making eye contact and NOT smiling
  • 64% of subjects smiled when facing Em walking, making eye contact and smiling
  • 44% of subjects smiled when facing Em in a wheelchair, making eye contact and NOT smiling
  • 95% of subjects smiled when facing Em in a wheelchair, making eye contact and smiling

This may not be groundbreaking science worthy of a peer reviewed journal or even a highly competitive Jr. High science fair, but it was shocking for Em, who has long held the opinion that people treat you like crap when you are in a wheelchair. Perhaps they do treat you differently, but, they are more likely to be polite and smile when faced with a smiling face. In non-scientific terms, you get more flies with honey than with vinegar!

She did a great job, learned a lot and got a blue ribbon. It was a great experience and I am so thankful that she is well enough to have had a chance to join in – she has missed out on so much over the last few years.

Em's  project board

Em’s project board


Another exciting weekend…

My child has a knack for getting injured in ways that make doctors, and her parents, shake their heads…This one was pretty memorable but, thankfully, all’s well that ends well.

On Fridays, our homeschool group meets for classes. Em is taking a couple classes but  is spending her time 3rd period ‘helping’ with the 2/3s class, which translates into playing with them and frequently getting hurt by the precious little miscreants. (I say that with the utmost love for the little darlin’s. It is the most dangerous place in the entire building for her but it is not fair to blame the little ones – it is almost always Em’s poor decisions that cause her to get hurt. Like, rolling around on the floor with several toddlers piling on. Or sitting in a Rubbermaid tub  and allowing the children to tip her over time after time. And spinning around and around with a child until they are both so dizzy they fall down. And so on and so forth.)

This time, she was playing with one of the kids – laying on her back with the child sitting on her belly. Another child came running full speed and launched himself at her, somehow punching/hitting/whacking her in the eye. I found her after class, nearly in tears, rubbing her eye and clearly in pain. Then she mentioned that there was a black shadow covering about a 1/3 of her eye and around the outside of her field of vision. Her vision was blurry. She had seen flashing lights when it happened. So, I was quite concerned, knowing as I do that her EDS makes her vulnerable to eye problems. My concern only deepened when I got home and googled the symptoms. It sounded a whole lot like a detached or torn retina before I hit up Google for answers and even more so afterwards.

We hemmed and hawed about it, not sure if we should rush her to the ER or if it could wait until Monday. Then Em started saying that it was better – the shadow was receding and all was fine. I suspected that she fibbing just a bit, that she wanted to avoid the doctor because she didn’t want to be blown off or be told nothing was wrong and that we were stupid for going. Or that she was concerned about money, even though we assured her insurance would cover it and money was not an issue.

We ultimately decided to wait until morning and see how she was. Saturday morning, when she woke up she was still in a lot of pain and she confessed that the shadow was not gone quite as much as she had indicated the night before  – I was pretty sure she needed to be seen, sooner rather than later but hated the idea of going to the ER. These are the moments that are so darn tough…don’t want to overreact, don’t want to underreact; her bout of appendecitis was fresh in my mind and makes me doubt myself.

I knew if I called the pediatrician, he would just tell us to go to the ER. If I could even get a hold of the geneticist, he would say go to the ER. I was pretty sure that they would examine her in the ER, then send us to the opthamologist on Monday anyway. I really just wanted an informed opinion to guide us – this is what I ALWAYS want. Well, it finally occurred to me that I could just call the opthamologist (although I despise the one we currently have) and talk to an on-call doctor.

So, I did and was talking to the doc (not the one who proved himself to be a moron a few months ago, fortunately!) within half an hour – wishing I had done this the night before! He felt she needed to be seen and said he would meet us at the office in a couple hours – it is closed on the weekends. So, we got there a few minutes early. He had a football game on in the waiting room, was dressed in a Broncos jersey – clearly pulled away from his weekend activities – and took us right back to the examination room. He did a very thorough exam and was happy to tell us that all was well – no sign at all of a torn or detached retina and that her lens was where it needed to be (methinks he did a bit of research on EDS before he saw us or he might have even known enough without researching it).

Em got to hang out and make friends with a lonely little puffer fish who took a serious liking to her as she stood by the office fish tank waiting for her eyes to dilate; her parents got to streamline the whole diagnostic process by going directly to the opthamologist (a nice one at that), totally skipping the typical, maddening ER experience where we have to spell   e-h-l-e-r-s  d-a-n-l-o-s and in which we  usually are sent home with little or no help and are made to feel like idiots. As terribly frightening, vision threatening eye injuries go, it was quite lovely.

Also, I was right about her fudging the truth to avoid the doctor but wrong about her reasons. She was pretty well convinced that something was really wrong, knew enough that the answer could be another surgery and just didn’t want to know. She went for the head-in-the-sand route. Can’t say that I really blame her, but we have since talked about how ignoring problems generally only enable them to grow worse. And that not knowing can be far worse than knowing. She was very relieved to find out all was well and is no longer torturing herself with the unknown.

We are very, Very, VERY fortunate that her eye is fine and her vision is not threatened. Although, there is no explanation for why she has a shadow around her peripheral vision, other than she got whacked in the eye. Hopefully, that completely disappears (it is better and the blurred vision is gone) soon and her vision ends up completely normal. We are supposed to see the opthamologist in a month for a follow up, just to make sure everything is ok.

All in all, pretty much a normal state of events for us and we are breathing a sigh of relief, again.

EDS and Homeschooling

Before EDS infiltrated our life, our focus was homeschooling. These days, Em isn’t able to do anything in the way of formal learning. I have come to accept it and my focus has changed – I am concerned with keeping her in one piece and surviving until adulthood. My plans, hopes and dreams for her have all changed and academics are the least of my concerns. Her older brother is also homeschooled and he often makes do without me but that isn’t far from the model I was aiming for anyway – by high school, kids should be largely self taught. I just didn’t intend to be quite so hands off so early.

Anyway, this weekend was the Cincinnati Homeschool Convention. Last year, I went for the whole weekend with 3 other friends and it was a great girls get away and a time for me. I remember being a bit concerned about leaving Em, she was dealing with the ongoing patella dislocations and her fingers were going from time to time, but my concerns were mostly run of the mill mommy worries. This year, I really, really wanted to go but I just could not leave Em for 3 days. I decided to have Andrew take me on Sat (if Em was well enough) and Em convinced me that we should leave Friday, stay in a hotel and go to the Convention on Saturday. So that is what we did – my mom ended up staying with the kids so we could go. In all, we were gone about 24 hours – didn’t get to go to any of the workshops but I did do my shopping.

Like so many other ‘normal’ activities these days, I struggled and was teary eyed most of the day. Every where I looked, people were ‘normal’ and it was a bit overwhelming to be honest. The booths and venders were selling ‘normal’ curriculum to ‘normal’ parents who have ‘normal’ kids.

Last year, I was one of them. This year, not. Everything reminded me of what Em can’t do anymore. I had to step out a couple times so I didn’t make an idiot of myself. I know it is all part of the grieving process, but knowing that doesn’t ease the sting. And, of course, I saw people I know and haven’t seen for a while and had to give them updates on what is going on. I am blessed to have such good friends and it is such a blessing to have so many people praying for us.

One vender I was  specifically headed for was the Notgrass booth. They have some great history materials and have a new Jr High American History. I was wanting it for Em because it will be flexible and allow her to move at her own pace – when she is better.  The Notgrass booth is one I had to walk away from in tears and compose myself- it was just so hard to pretend I was a normal homeschooling mom when my heart is breaking.

When I finally made my way back, it turned into a good experience. I was in the middle of having Mr. Notgrass get me some books that I needed when a good friend walked up and started talking to me. Gave me a hug and we both were in tears. We talked for a few minutes and I filled her in on the latest with Em and shared how I was struggling. Eventually, she left me to get on with my shopping and Mr. Notgrass helped me finish my purchase. As I was checking out, he mentioned that he couldn’t help but overhear that I was having a problem and asked about my troubles.

I didn’t go into the details, just told him that my daughter is very ill and we are having a really hard time. He was very sympathetic and said he would pray for us. Most likely, he will – that is how they are. They are good folks (it is a family business) and I was very touched by his kindness.

Little things like that make me remember how blessed I am.

So, in addition to the literature based history curriculum I purchased, I also ended up getting a couple lapbooks and unit studies for Em to do when she is feeling better. Lapbooks are probably the answer for her in the foreseeable future as they are self pacing and versatile. I will be overjoyed when she is able to function again.

Back to the medical side: Last night, she popped her neck and ended up in a lot of pain, very dizzy and nauseated. She was even having a bit of trouble breathing. Ever since I was reading about sudden death associated with atlantoaxial instability (the specific term for her cranial instability), I have been freaking out a bit. I was tempted to take her to the ER and then decided not to since I was probably overreacting. Then worried all night that we should have taken her. It is such a huge responsibility.

I don’t want it to be AAI but if it is, we have to get if fixed as quickly as possible. We see Dr. Parnell on Tuesday – hopefully we have a few more answers then. I think we need to approach the Chiari Institute – they will be the ones to help if anyone can. Not sure how Dr. Parnell will feel about that – but she is leaving in May so our time with her is limited. Once she is gone, we will need a plan. If we end up being referred to a neurosurgeon at Cincinnati, that is fine. But I am convinced that our final destination will be The Chiari Institute, since they are the premier of the few who do the cervical fusion on pediatric patients.


Whenever Emily does anything that requires energy, she pays for it – often for days afterwards. Bowling yesterday was good – even if she didn’t actually bowl. She got to be there, hang out with the other kids and it wasn’t something she was really dying to do anyway, so she seemed ok with not actually bowling. When the group goes skating, that may be a different situation and we will cross that bridge when we come to it. Her life has distilled down to the point that we are grateful for the small things. So, bowling was good.

But, even though bowling was good, she is paying for it today. She was already in significant pain. She had a bad headache. Had to get up early (for her) and ride in the car for the half hour trip to the bowling alley. Then she was surrounded by 75 or so very loud people having a great time for several hours. That kind of energy expenditure costs.

Today, it was 2 o’clock before she got up. She dreamt that she broke her leg – woke up to find her shin aching, apparently her pj pants were hurting her? Didn’t sleep well. Hurts all over today – I can’t touch her anywhere without making her flinch. Terrible headache again (still). Hurts too much to do anything but her brain is bored and tired of being cooped up.

So, even a good thing like a day out, hanging out with friends and having fun has a price.

On a more positive note, apparently the ring splints have been ordered and we should get them fitted by the end of this week- if all goes well.

Fun in spite of EDS

Today our homeschooling group had a bowling party. Of course, Emily was not able to bowl – she was in her wheel chair today and her fingers, wrists, elbows and shoulders couldn’t have tolerated the strain of bowling anyway. So, she sat and watched while her friends bowled. I don’t think she was terribly upset but it is always a bit sad for me when I watch her sit out while her friends have fun.

The good thing is that Emily has a great group of friends who are nice to her and take care of her without upsetting her. Two of the older girls ‘bowled’ for her so, somehow, she ended up with the second highest score of the group. Not quite sure how that worked but it was sweet of them! I am so thankful for the kids who accept her for who she is and draw her into the group. One of the older girls has even made a facebook page to raise awareness about EDS and support Emily. We are blessed to have such a great support system.

Emily had a terrible headache when she woke up this morning – as usual – but seemed to manage the noise and crowd pretty well. One of the little ones had a balloon and Emily had a bit of a latex reaction, even though it was across the room. The bowling alley was technically wheel chair accessible – a very steep ramp into the building. Challenging to push her up, downright scary going down. Once we got in the building, it was fine. She said she had fun though, so I am glad we went – not that we have a choice with me being Administrator of the group!

Still haven’t heard an update about the ring splints – hopefully, they are properly ordered and will arrive soon! Sometime soon I will put on a link or pictures of ring splints…

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