Who Knew Ears Could Be So Fun?

Last Tuesday, we had our long awaited visit with the neurologist at OSU. It is complicated and we are still absorbing it. I will post later this week about it – I think my head is finally to the point that I can write about it.

But the fun, and I say that with the greatest sarcasm, never stops around here. A couple weeks ago, Em dislocated her thumb badly  (as only an EDSer can)  and we are probably going to have to get it looked at. Not getting better on its own and isn’t likely to, I think.

Then, on Friday, we were coming home from Speech Therapy and had just pulled into our driveway, when Em suddenly felt a loud pop in her ear and got very dizzy. We knew there was fluid behind her ear drum but had been told to just keep an eye on it. Honestly, it never stopped hurting – she just didn’t complain much about it in the last couple weeks because she had so many things going on:  something like an ear ache just doesn’t register very high on the priority list when everything is falling apart.

I called the ENT – it was late on Friday afternoon so I really didn’t think there was any chance of him seeing her and I found out he wasn’t in anyway so it was a wasted call. The nurse said to just go to Urgent Care. We were both too tired to deal with it on Friday but when her ear still hurt and she was still so dizzy on Saturday, off we went.

Sure enough, her ear drum is perforated. Again. She is on antibiotics and I guess we just wait it out. She has an appointment with the ENT in April, but I guess if it continues to be a problem I can call and hope he can see her earlier. Clearly, something is going on with that ear – not sure what it is and no one seems terribly interested in figuring it out. At least the perforation is documented and we know to be very careful about getting fluid in her ear for awhile. (I still think she had a CSF leak in her ear and that was the fluid buildup, but what do I know?)

The funny part about our Urgent Care visit, is that the Neurology Nurse Practicioner who has seen her for 4 1/2 years (and is the one who prescribed her Diamox) works over there on weekends and he is the one who saw her. So, we had a little impromptu neurology visit and were able to update him on what all has happened since we last saw him. I was still pretty ticked about the fact that he tried to send Em to psychiatry for her seizure episodes but I let that pass and opted not to strangle him or anything. We are getting the episodes addressed and he is fine with the course we are on (not that it would matter if he wasn’t, tbh) so it wasn’t a bridge that needed burning on that day.

I will update more about the episodes in the near future as well, since the new neuro is addressing them.  Brian did earn back a few points when he asked what antibiotics she could safely take. He knows she is complex and I appreciated that. And he totally understood when I said anything but the fleuroquinilones. I might be able to eventually forgive him assuming her seizures are psychogenic before attempting to rule them out. Maybe.

So, anyway, another perforated ear drum – the second since November. Like she needs another problem.

Everything else that we are dealing with…

So much has happened in such a short time, I can hardly remember what I have posted about and what I put off for later. In addition to the lumbar puncture, the blood patch, the ongoing high pressure issues and the likely CSF leaks, Em has been dealing with a concussion and that injured rotator cuff and, of course, what we presume to be CRPS.

Shoulder Injury

PT dismissed her because she was struggling intensely with the most basic exercises she was given. At the time, we were suspecting that her neck had become unstable and that was a big concern – for some reason people get a little jumpy when you mention her neck is unstable! Fortunately, a lot of the issues that we assumed were down to instability eased up when they did the lumbar puncture, easing the high pressure.

So, the plan was, talk to the specialists at Cinci and wait and see. In the meantime, her neck is better and  she has been able to gain a lot more use of her shoulder and is out of the sling. At this point, we will just carry on and hope the shoulder doesn’t get reinjured. In a perfect world, we would be able to focus our energy on her shoulder but, as we are far from a perfect world, there are too many other things to worry about. Sadly, since it seems to be improving, her shoulder is low on the list of priorities at the moment. I am just glad she has use and motion back and has less pain.

Concussion

She is doing better, but still not well. I think I mentioned that she fell and hit her head (again) on the 9th, which worsened the memory loss and balance problems. That was a little scary, to be honest but the doctor felt like the second injury should not have been enough to cause any damage and waiting it out was the thing to do. We have just made it a priority to protect her head as much as possible and keep her safe until she is steady again. Some of our precautions she doesn’t particularly appreciate, but protecting her brain is non-negotiable.

Her balance has improved from what it was after bumping her head that second time, but it is still not great. She is using her wheelchair when we are out in public. That is frustrating for her, but, I can tell you that I am so grateful we have that wheelchair in times like this.

She has started speech therapy to help rehab her brain. She had her second visit yesterday and will go again tomorrow. Her memory loss is better – she is able to recall details much better than before – but she is still incredibly frustrated when she is searching for a word and just can’t pull it up. And she is bemused at what her brain does recall and at how odd it feels to not know she knows something until she suddenly remembers.

Right now, we are still being guided by her symptoms – she can do the speech exercises in varying chunks of time before she starts hurting. Sometimes she can go straight through for a considerable length of time before her head starts hurting and other times she hits the wall sooner. This week she is going to write answers on a worksheet with various questions and we will see how that goes. She had a disconcerting time a couple days after the second bump when she realized that her brain was sort of disconnected to the actual process of writing. She said it felt like a reflex but that her brain wasn’t really doing it.

We go back to the concussion doctor on the 5th and she will have neuropsych testing done. I think she is definitely better  and continuing to improve: we are all happy with the progress she is making, but this is all new ground for us and it will be good to have knowledgeable eyes on her.

She did sit in her room and play her guitar a couple days ago and that was a wonderful sound. It has been a while and she is just now getting to the point of being able to remember the cords and lyrics that once came so easily to her. Music is such a part of her life – being able to play again is a huge morale boost.

CRPS

Way back at the beginning of December, we saw the pain doctor and emphatically expressed our need for help. (Sort of a comin’ to Jesus type event.) Bless him, he spent an hour with us on a day we weren’t even scheduled to see him and his waiting room was packed.

Anyway, I had taken in a referral form for a doctor I wanted him to send us to – a neurologist specializing in neuromuscular diseases at OSU medical center. I had filled the form out as fully as I could (and told them what to put in the lines they needed to fill out) in the hopes that there would be no excuse to not promptly refer us. It did take a polite reminder but they did eventually get us referred. Honestly, I wasn’t even sure if this doctor would see Em since she is 17 so it was a shot in the dark. His office called to ask some questions and clarify the situation and to inform us that he normally wouldn’t see anyone under 18 but that he would consider it.

Thankfully, he is willing to see her and we see him on the 15th of March. I am cautiously optimistic that he will be helpful in giving her a diagnosis and figuring all of this out. Recently, her lab results got a little more complicated and it is doubly good that we are going to him – I will get to that issue in a just a minute. I hear he is very smart and very kind so I believe we are on the right track and I am beyond grateful he is willing to see her.

New Diagnoses

Em has had a ton of labs done – between the CSF testing from the lumbar puncture and the blood work that has been done – we have at least been able to look at a lot of things that can be ruled out or addressed. We saw the neurologist last week and I was not surprised to hear him say Em is beyond him and needs someone with more knowledge than he has. He has absolutely done right by her for 4 years, so that was a little emotional. He will be available if we need him, but we need to get somewhere with more knowledge.

He was concerned – not overly but said it needs to be looked at – with one of her labs. The one test shows some markers for MS. She has three bands and four indicate MS. Now, he doesn’t think she has MS and I don’t think she has MS. I just think her entire nervous system is on fire and there is nothing at all conclusive about that test in regards to an MS diagnosis. However, she needs to be evaluated by someone who can handle all of her complexities. Fortunately, we already have an appointment with a doctor specializing in neuromuscular disease. That is exactly where we need to be and I doubt we would be able to get a sooner appointment anywhere. So, it all seems a bit Providential when I look at it.

Also, the doctor ordered an additional blood test which has come back elevated, indicating Sarcadosis. Am I surprised that at this point she is showing signs of an autoimmune issue? Not at all. Truly, I am just surprised she hasn’t shown any autoimmune signs previously. Again, and almost as always, she has enough symptoms that sort of tick the boxes for one thing but that also overlap with about a dozen other things. So, who knows. She also had a lung x-ray and we are being referred to a pulmonologist. Again,  I am not getting too worked up about this – if it is sarcadosis, it is treatable. If it isn’t, the symptoms (which, if they exist, are being masked by everything else that is going on) are certainly explained by everything else she is dealing with.

ER Complaints

We have taken our complaints about the whole lumbar puncture/ blood patch/ ER/ latex exposure debacle to administration and we are, fortunately, being taken seriously. So far, profuse apologies and some ideas on how to make sure this never happens again – not to us or anyone else – have been offered. I am not going into details right now, because this is, after all, my husband’s employer, and I want to tread lightly but suffice it to say they are doing right by us and I think we will be satisfied by the time it is all done. I am very hopeful that this will be an opportunity to share awareness about Emily’s rare conditions and help foster an atmosphere that better understands how to treat complex, chronic illness. Which, in the end, is what matters to us.

One Last Thing

Finally, I would like to ask for your prayers for my mom. She has been diagnosed with breast cancer and will be having a mastectomy in the near future. But, she has great doctors and her prognosis is good, so, even though this is a blow, we have faith that this is all going to be ok.

 

So those are the highlights from our crazy life right now. If it all sounds exhausting, it is! But, we are hanging in there and trying to keeping our sanity intact.

 

Catching Up and Hanging On: Part 3 Shoulder Woes

To recap: a lot going on… concussion and post concussion symptoms, possible CSF leak, recurrent ear infections. Lots of doctors. Blah. Blah. Blah. Here are Part 1 and Part 2 if you want the longer versions. 

As I have mentioned the brain/ neurological stuff has us concerned but there are always other issues to make things even more interesting. In November, Em screwed up her shoulder. It had been an ongoing issue, one injury after the other and one day it just quit. Got an MRI and it showed tendinopathy, which is a fancy way of saying tendinitis. Basically she has no movement in that shoulder that does not cause pain and has been in a sling day and night since. External rotation is excruciating. There was no evident/major tear on the MRI but we got her in to the Ortho to find out how to proceed.

If you have read for a while, you might recall that Em is rather needle averse. She will do pretty much whatever she needs to do to avoid any and all sharp objects. But, she wasn’t surprised and didn’t object when they offered her a cortisone shot. Well, she did tell the PA who did the shot that he was rude as he inserted the needle. She had been told it wouldn’t really hurt, just a little pressure, and she found that to be not precisely true. He laughed and told her that he was almost done and she could say whatever she needed to say to get through. Which was not a wise offer in my opinion, considering I never know what might come out of her mouth at any given time – and she was suffering from a concussion so he got off lucky, I think! Later she asked how far the needle went in and I told her she really didn’t want to know. She said it felt like he shoved it into her joint and I told her that is sort of the point of the shot. She was not impressed!

Anyway, he didn’t hold out much hope that the shot would do much on its own but he sent her to PT and was hopeful that the shot would help PT be a little less painful and more effective. In all honesty, I don’t think the shot did anything – she has had no noticeable pain relief, but then again who knows what it would be like if she didn’t have the shot. It was definitely worth a try and I was so proud of her for braving it. She pushes through an awful lot on a daily basis but this was kind of a big deal.

On to therapy… She had her eval on the 31st. She is seeing “her” therapist, who has pretty much been with her from the beginning. So, while he is admittedly not an EDS expert, he knows Emily. And we trust him. Her eval revealed nothing we didn’t already know. Her shoulders are extremely unstable. They slip in and out with pretty much every movement. That makes rehabbing her shoulder challenging. She will not tolerate normal rehab; for now, she has very simple isometric exercises that are done with me stabilizing her shoulder.

Her exercises:

1. arm stabilized and in ‘neutral’ position by her side so she can do a few reps of pushing up, down, in and out. These are isometric exercises so we are talking tiny movements. Doing 5 leaves her winded. Doing 10 exhausts her as if she had just lifted her own body weight. We have pushed up to doing 10 but it is more important for her to do 5 good ones than 10 sloppy ones.
2. With her arm/ shoulder stabilized, she does a few reps of external rotation. This is very painful. The goal is tiny movements to stay below that pain threshold as much as possible.
3. with arm/ shoulder stabilized, she squeezes her shoulder blades together. Sounds much easier than it is.
4. We added to the first exercise at her last appointment – we are going to bring her arm out of neutral, to maybe 20 degrees and try the isometric movements. That one is going to be rough.
5. When her arm is out of the sling, which he does want her to do as much as possible when feasible, he wants her to stretch her arm out straight, gently move her wrist and fingers, and bend it a few times. That last part is incredibly taxing. She shakes as if she was lifting 100 pounds. Clearly, her muscles are weak.

Unfortunately, her other shoulder is nearly as bad. There is no injury but it is weak and it is suffering from compensating for her left shoulder. We are doing exercises on both sides and hoping for the best.

Everybody we have seen while she has been in the sling has made a big deal of her getting out of it because her shoulder will freeze up. We kept telling the doctors that the problem is her arm falls out of the joint if it is not supported. It is unstable enough that freezing up starts to sound good at this point. (I exaggerate there a bit, freezing up is all too possible and we don’t want that either, but you probably get what I mean.) We felt pretty vindicated when the PT was so concerned about her instability and told her to keep it in the sling. She should, and does, take it out but it has to be supported when not in the sling. So, she either holds it in place with her other hand or props it up with pillows.

The Ortho PA did say if PT doesn’t help, the doctor might need to go in and tighten things up. I didn’t go into it then, knowing we will cross that bridge when we come to it, but surgery is not a good option. Seriously. I mean, it could absolutely become necessary and we may be facing that choice down the road but we are going to do everything humanly possible to avoid it, because once we go down that road, I fear we will never stop. And that doesn’t even bring the issue of CRPS into the mix and how bad an idea surgery would be in that regard. I am only talking about the reality that tightening an EDS joint invariably will fail in a year or two or five and she would be considered lucky to get that much time out of a repair. And yet, we could find ourselves in a position where possibly gaining a year or two of function might start looking mighty good.

Suffice it to say, her shoulders are not good. We feel we are in good hands, both with the Ortho and the PT. We follow up with the Ortho (last time she just saw his PA) on the 18th and hopefully she will be making some real progress in therapy by then. I think it is safe to assume this will be a long, hard, grueling process. There is no easy fix and she is willing to do what she needs to do to get better.

We are concerned about her neck. Of course, wearing a sling is hard on her neck. Her muscles are already tight and it is just getting worse. As I mentioned in Part 2, the Concussion Expert wants her to do stretches to loosen up her neck and  hopefully ease her headache. She can’t really do any of the stretches he suggested, so I have been massaging her trigger points hoping to ease the tightness. Unfortunately, that has led to her neck being rather scarily unstable. When those trigger points are released, she ends up a bobble head. And that is not good. It is a matter of constantly juggling one issue with another and trying to figure out how to manage them both; often, they are competing problems with solutions that cause direct complications for another issue. It feels like we just go round and round.

But, we have a plan and know where we need to be headed. Everything else is just part of the journey. We have been down a similar road before and made it through; there is every reason to believe this time will be no different!

Catching Up and Hanging on: Part 1

Right now the medical issues are coming at us faster than we can field them. What was of the utmost importance two months ago is now on the back burner as bigger problems arise. I think it is safe to say we are in survival mode. I don’t quite know where to start as I sit down to post. I haven’t had time to even consider posting with all of Em’s medical issues and trying to survive the holidays and now there is a lot of catching up to do.

So, this post will be Part One: Brain Related. Part Two will be the rest of that story and Part 3 will be shoulder related and will be posted tomorrow. Otherwise, it would be an amazingly long post, even by my standards and that is a pretty high standard!

Last I posted, Em had been to the ER for a suspected CSF leak. Since then, she saw the ENT for her ongoing ear infection. She did have a fungal infection, which he treated. He was concerned about the idea of a CSF leak and seemed to immediately grasp the risk for her, which was a comfort. We see him again on the 19th to follow up. Her ear is hurting again so we may not make it that long.

She also saw the neurologist to follow up after the ER visit. We couldn’t get in for almost 2 weeks and in the meantime, the low pressure symptoms abated and we assume, if there was a leak, and I think there probably was, it healed. He wanted to do a spinal tap to rule out infection and check her pressure but we talked him out of it. Her symptoms were better and it did not seem wise to subject her to it, not with everything else going on, which will become clear in a moment. He understood and put a note in her chart to schedule her for a spinal tap if we call with further symptoms. That way we don’t have to go through the ER and hope they do something about it. LPs are not to be undertaken lightly for people with connective tissue disorders and, while I understand we may end up at a point of needing one, we want to avoid them if at all possible.

The biggest concern by the time we got to him, was not so much the low pressure issue because that seemed to level out, but very concerning symptoms after a head injury she experienced the day after going to the ER. It was a relatively simple, mild injury: the shower head fell on her head while she was showering. For anyone else, it would have been no big deal. For her, it has turned into a scary episode. It is perhaps complicated by the fact that she has hit her head several times in the last couple months. It was also complicated by the fact that she likely had a CSF leak and so her brain had less cushion to protect it.

Initially, the head injury was mixed up with all of her other stuff (bad reactions to new meds, low pressure/ CSF leak symptoms, even cognitive issues from CRPS) and in a way it didn’t matter because the treatment would just be to rest and allow her brain to heal, which she did. It seemed like such a minor injury that the ER would flag us as nuts if we took her in, particularly since she had been there just the day before. (“Hi, we are back. I know she just had a CT scan yesterday but she was attacked by the shower head so can we have an MRI?” Yeah, that would get us flagged for sure.) But as we got a day or two away from the injury, I started getting more concerned and had to wonder if she really did have a concussion. Like, maybe a serious one.

Then, 5 days after her injury, we had a conversation that made me realize it was more serious than I already thought. She told me we could have a conversation but she wouldn’t remember it. So, I probed and tested her memory. She could not remember how old she was going to be on her birthday on the 22nd. “Am I going to be 17 or 18?” She couldn’t remember when we were going to celebrate her birthday. I still am unclear if she didn’t know when her birthday was or just didn’t know when everyone was going to be present to celebrate. She couldn’t remember details about her upcoming Ortho appointment that I had told her an hour before. She couldn’t remember what day her brother was flying home for Christmas. Both were important events; notable to her. She couldn’t remember things that had happened the day before at her ENT visist. Over the next few days, as we waited to get to the neurologist, her memory remained spotty and concerning. My observation was that she could sometimes remember when prompted and reminded or that she guessed instead of knowing the answer, often wrong.

So, when we talked about it with the neurologist, he said it sounded like a concussion and he wanted us to see a concussion expert. I was able to get her an appointment at the Concussion Clinic at Cincinnati Children’s on the 5 and it is a good thing we made it a priority.

Continued in Part Two: Concussion

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.

Co-op

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!

 

 

 

 

Waiting for answers

We got Em into the ortho on Thursday. Well, she saw the PA but it is the PA of the ortho we want and like and we like the PA as well, so I was happy. My husband has a good handle on which doctors are good to work with, who is better than competent and who is trustworthy, so let’s just say we knew who we didn’t want. (It is all one big practice so most of the time it is the luck of the draw, even if you can claim one of them as your doctor. One bright spot, the ortho who told her she could be in the circus in one breath and then in the next breath claimed to have invented the best way to operate on EDS patients is thankfully no longer there, so we at least don’t have worry about seeing him! Honestly, luck of the draw was an improvement over him.)

After a painful, albeit quick exam, the PA ordered an MRI. If she were ‘normal’, we might wait and see if it will heal on its own, but she isn’t normal, she can’t put weight on it and she is in a lot of pain. The PA seems to be leaning towards a cartilage tear, which lines up with what we are thinking. Although, it could be a cartilage tear and other soft tissue damage, we will just have to wait for the MRI.

Trying to get the MRI scheduled turned into a bit of ordeal – played phone tag with the office, only to find out at 6 pm on Friday that central scheduling couldn’t schedule it (even though we were told to call them ) because they didn’t have the order. Nice. Apparently the MRI can be done at the open MRI at the rehab building, which is scheduling as early as today, or at the closed machine at the hospital, which has no opening until the 15th at least. Seemed like a no brainer except for the fact that no one could schedule it for us!

I just (finally) talked to the nurse and we got the MRI scheduled. Tomorrow (Tuesday) at 1:30, at the rehab building. The follow up appointment is 2:30 on Wednesday. The PA told us he had openings ‘every day this week’, except Thursday and Friday – but if the follow up was scheduled 3 days after the MRI like he told us it would be, I was worried that it would be into next week before she was seen again. The nurse said it was no problem and just scheduled us to see him the next day so we don’t have to wait until next week to see him, which makes me a lot happier than I was over the weekend!

Her knee seems a little better, though. Or, at least better than she was Friday evening after being at Co-op all day. The PA told her she could wear her immobilizer to help stabilize her knee. So, she did. It helped – made it so she could hobble around with crutches when she couldn’t be in her wheelchair. She was in her chair quite a bit and was generally pretty responsible.

But, when we got home late Friday afternoon, her leg was crazy swollen. I have never seen her swell like that – she had no ankle. It was probably a combination of having the immobilizer on all day and being up on her feet too much, but it could also indicate other things going on. So, she elevated it the rest of the evening and most of the next day and was packed in ice from thigh to toes.

I was particularly concerned because she was having some indications of RSD developing. But, by Sunday, the swelling was down, she could feel her toes again and her feet were the same temperature. She does have RSD pain from her knee down, but that seems to just be a normal part of any major injury for her. We will start some desensitization exercises and try to get ahead of it. Unfortunately, the ice that is needed to help with the pain and swelling can trigger RSD (and does for her) so no more ice.

Now we just wait until Thursday to see what the MRI shows. Hoping she can avoid surgery…

September Recap

Well, it has been a while since I posted – far too long, and I apologize! So, I guess I will give the usual update on how things have been going since I last posted.

General Grumpiness

My computer is in its death throes, which makes me pretty grumpy. I am pecking this post out on my Kindle and trying to insert photos, which makes me very grumpy. And, my book is on that dying (i am still in denial, so time of death has not officially been called yet) laptop which makes me very VERY grumpy. It is backed up (thank God!!) but I just can’t do anything with it until I have a laptop to work on.  Putting my book on hold * again* makes me beyond grumpy. But, we will get it figured out. Probably isn’t worth fixing, but buying a new laptop isn’t in the budget atm.

So, that explains my absence here – at least partially. And explains the general grumpiness partially as well…

General Busyness

Our homeschool Co-op has started up again and that means being busy. Em is teaching a guitar class and the little kids music time – she has the toddlers and the preschoolers, a couple dozen homemade instruments, a CD  of mindnumbing kids songs and a pair of ear plugs.  She is either crazy or a saint, not sure which – fortunately, the guitar class is kids her own age, so she can make some friends who are more than 5 years old.

And, she is helping me direct a little musical – The Tale of Three Trees. She is doing the music direction because the mom who was supposed to do it ended up having to back out and I certainly can’t do it. Emily got ‘promoted’, ’nuff said.

So, we are working together. It has been nothing but exciting so far and we just got started. Seriously, we are doing fine together. She and I see eye to eye on most everything; we are working with some great ladies and we have some very  talented kids so it’s all good even if there are times when I question my sanity. This kind of thing is like childbirth: you forget how painful it is until you get into it again, then you wonder ‘what was I thinking??’

I would be lying if I said I wasn’t a little worried about how Em will handle the stress. But, she lives for music and I think this will be good for her. More on Em’ s well being in a moment…

The Kitten

Malli[e] (the [e] is silent; a compromise after Em and I vigorously disagreed on how to spell it. I wanted ‘Mallie’, Em wanted ‘Malli’ and said the e could be silent so I stubbornly spell it ‘Malli[e]’ even though it makes this tiny critter sound like a self-important celebrity. Which, I suppose she is in her own tiny little way.)  is doing fine and is the best possible thing for Em. She has settled in wonderfully and is terrorizing our home like only a kitten can.

Padme has, thankfully, accepted her quite well – exceeded our expectations even – and seems to  even be a tad bit fond of her, when Malli[e] isn’t pouncing on Padme’s enticingly swishing tail. We knew Malli[e] had ‘arrived’ when we found Padme curled up with her on the  couch. (I would share a cute picture, but, you know, I have no way at the moment to share it. If I overcome the technological hurdles, I will share it. Until then, you’ll have to use your imagination.)

Malli[e] has adjusted to her new digs and when I say adjusted, I mean she seems to view her entire environment as a 3-D playground and is determined to explore it all with a zeal that is impressive if not exhausting. She is still quite ‘Zen’ but more in the sense that nothing much phases her and she simply does as she pleases. She got over that not-playing-much thing in a hurry.

She also is very, very fond of food. She is fond of her own but is particularly fond of everyone else’s. You’ve heard of defensive driving? Here we do defensive eating. Malli[e] is a charmer but doesn’t rely on her charm to investigate those lovely things called plates and bowls – who needs charm when sheer persistence and deft little paws get you what you want? So, we are constantly trying to keep a curious, ingeniously determined kitten out of our plates, snacks, drinks, etc. (Hmm, that makes it sound like we are constantly eating. Well, we do several eat several times a day and her persistence certainly makes it feel as if we are fighting her off ALL day long.)

I chalk her attentiveness to (read: obsession with) food up to the fact that she probably was very hungry when she was fending for herself outside. Poor little baby, it breaks my heart to think of her going hungry. But not enough for me to share ice cream with her.

Emily and September Don’t Get Along

So, it wouldn’t be September without Em getting injured (it is tradition, it seems) and 2014 is no exception. We were so close to getting through the month unscathed…but, no.

Monday night, she was kneeling on her carpeted floor, pivoted on her knee and heard/ felt a loud pop, ‘ like a rubber band breaking’. Didn’t bother her much until the next day but  it only went down hill from there. She, in her infinite wisdom, neglected to tell me, so the next day when I happened to see her knee looking like this:

… I freaked out a bit. Understandably, don’t you think?

It is a bit swollen but not greatly, probably because she just doesn’t swell. When she dislocated her knee the first time (5 years ago, in, you guessed it, September), or the next 100 times for that matter, she didn’t swell at all. She always bruises her knees when she kneels but that bruise is… unusually spectacular. She says this injury hurts a lot worse than the first big dislocation, so… YAY! And she is asking for ice, which she never does, so I figure she is in bad shape.

If I had to guess, I would say she tore cartilage. But Andrew is concerned about her pateller tendon, so we will see. She is icing and elavating it and generally taking it easy. We are in a holding pattern until we see how she does over the next few days. We will take her straight to the surgeon who has done Andrew’s two latest surgeries if she needs it looked at. He is a good guy and an even better surgeon.

Sadly, there is no point in taking her to the ER or even the doctor right now – they would just take an x-ray, which would be negative, and they would tell us to wait a week and see how she does. (This is not our first rodeo.) If she isn’t better in a few days, we will get her into Dr. B and have him look her over. Surgery is a thing to be avoided if possible, so we just need to hang in there and hope for the best. She may not be able to avoid surgery but we can surely give it a shot!

Right now she is having a lot of pain and is having more and more trouble walking but we need to give it a chance to heal up. This is the part that sucks, as you all know too well. Take her to the doctor or wait and see…Ugh. It is times like this that I am very  thankful for her wheelchair and scooter that have been unused and gathering dust. We just pull them out, dust them off and she can at least get around.

She had been doing pretty well and now this. Frustrating to say the least. No idea what the next couple of weeks hold for us, but I promise I will post again soon. 🙂

 

Back with an update

Alright, I am back and you have my apologies. I know it has been awhile – too long, but I have the usual excuses… holidays, busy, preoccupied, tired, and so on. But, I am back and will start faithfully writing again. Cross my heart! 🙂

What has happened since I last wrote? What is coming down the track? Here is a little update…

• Em survived her time in The Sound of Music and thoroughly enjoyed herself. It was a great experience, albeit very taxing. We were all pretty worn out by the time it was over [read: absolutely exhausted]. And it is always so bittersweet to walk away when it is over. It was especially bittersweet this time with all the emotion of such an unlikely accomplishment, but, while it was extremely sad to walk away, the sweet was that much sweeter because of all Em had overcome to be there.

• Last week, somehow, Em got her right foot closed in a car door. Don’t ask me how – she has explained it and even demonstrated and I still don’t quite understand how she managed it. It wasn’t even her own car door, but, yeah, that’s my kid. (I suppose that requires a little explanation…She was in the back seat, with the sliding door open as she was getting out. She leaned over to get something and for some insane reason, thought it would be prudent to brace her foot in the frame of the open front door. At which point, the unsuspecting and exiting occupant of the front passenger seat, her poor nana, closed her door, having no clue that there was a foot in it! *Sigh*) Anyway, her toes were firmly shut in the door. Needless to say, her foot was pretty messed up. Never really bruised, never swelled and she could more or less walk on it.

 So, we waited a couple days but, when it got worse instead of better, we took her to get it checked out. Frustratingly, we were not able to get an appointment with the new ortho that did my husband’s surgery and had to see yet another ortho. The best I can say about him is that he wasn’t our old one so that was some improvement but we were not overawed by him. Long story short, her foot is not broken and ‘should’ be fine. However, he also told her to use ice even though she had (literally) told him 1 minute previously that she could not tolerate ice or heat because of her neuropathic pain. And, he told her to take Aleve, even though we had (literally) told him 30  seconds previously that she already takes Aleve. He was also holding her medication list that clearly states that she takes Aleve twice a day, which we politely pointed out.”Double the dose then. You can easily take it morning and night.” When we pointed out that she already does, he said, “well, double that then.”

 She was hoping to be given a walking boot or something that would protect her foot and let her walk with less pain, but, didn’t happen, which did not endear him to her. And, he cheerfully offered her a shot of Aleve, as if he was a savior. Needless to say, she refused and really started to loath him at that point. Anyone who thinks a shot is a good idea is no friend of hers.

 The end result is, her foot still hurts like crazy, she can’t walk on it without a great deal of pain, she is taking pain meds around the clock and there is nothing to do but wait for it to get better. Frustrating, to say the least. But, at least we know it isn’t broken. And if she needs to go back, we will do our best to see the ortho we like instead of the others.

• We have a follow up appointment with the cardiologist on Wednesday. I think the weather is going to be decent although bitterly cold – we had snow over the weekend and are supposed to get a couple more inches tonight and then more later this week, but hopefully there is a window before the next system comes through. The cold and snow has not made for a pleasant winter thus far for Em. She is definitely in more pain and is looking forward to spring! Would like to talk to the cardiologist about working more to get her orthostatic intolerance a little more tolerable. I mean, she can definitely be upright, but still has too many moments of blacking out and almost fainting. Not sure how we can tweak the meds but it would be good if we could.

So, we have been busy and tired and blah and life is chugging along at its normal, crazy pace.  I have also been working on my book, getting closer to being able to submit it and hoping to get it published.

Physical Therapy

Em is wrapping up her 3rd month of PT – 2 months in the pool and a month of land based therapy. Her re-eval is Friday and I am not sure if we will call it quits, opting for continuing at home, or if we will do another month of therapy. I am ambivalent, to tell the truth. She has definitely benefited from this course of therapy and we are fortunate to have a therapist who knows how to help, but it would be nice to not have to drive her to therapy twice a week. (It is a 40 minute drive one way. As you can imagine, that has taken up a fair amount of our time.) We will see on Friday what is to come and go from there. I know there is progress to be made – let’s be honest, she actually needs therapy for the rest of her life. But, other realities -like how many visits insurance will cover – have to be considered. So, we will see what happens.

As usual, it has been one step forward and two steps back recently. Frustrating, but a normal part of our life.

Last week, Em stepped wrong and wrenched her ankle, knee and hip. She actually ended up using a crutch for a few days because that leg was just weak and very unstable. Anytime she injures something, particularly a foot or ankle, her RSD flairs up and has to be tamped down. She ends up with increasing neuropathic pain all over and just has to work through it. She has learned that the best way to tamp it down is by walking on it – works better and quicker than the whole desensitization process that we have done in the past.  Between the RSD and dragging out the hated crutch for use knowing it will damage her shoulder, it was a week of lingering worries.

However, she continued with therapy: they had to modify it and took especial care of her injured leg, but she was able to continue and, this week, was back to normal. Her foot/ankle/leg/hip are fine now.  Just in time to be done, but, that too is part of our life!

 

 

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Towards the end of her session on Wednesday afternoon, I noticed there were a couple visitors observing the goings-on in the rehab gym:

At first I thought it was a dog, but quickly realized it wasn’t…

 

 

Two baby deer, munching on the hostas and watching the humans in the gym. One still had his spots…

 

One was smart and ran away, but this one hung around for a few minutes.

He was very interested in everyone who was gathered around watching him and snapping pictures. He eventually joined his buddy and wandered off into the woods.

 

As you can imagine, my animal lover was much more interested in the baby deer than she was in doing her therapy, but that was ok because pretty much everyone in the gym took a break and oohed and aahed over the deer. Definitely more interesting than exercising! And, I got to be a little smug, because, as much as she hates me taking pictures of her at therapy, she was glad I was able to snap pics of the deer!

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.