"Suffering the Slings and Arrows of Outrageous Fortune"

Posts tagged ‘Therapy’

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...

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...

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.

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!

Water Therapy

For the past couple months, we have been heading to water therapy a couple times a week. It is definitely a good thing – Em enjoys it and it has helped with her stamina and stability. It may not be a miracle cure, but it is one of those things that quietly helps improve life and I am very thankful for it.

Just for fun, I thought I would share a few pictures of the pool Em has therapy in and show what has been taking up our time recently.  I would have taken more (and shared them) but Em was not terribly thrilled with me taking pictures of her in the pool and spent half the time on this particular day glancing back at me to keep an eye on me and giving me the evil eye. Which was a tad bit counterproductive but her therapist had a laugh about it, so it all worked out.

Water Therapy

Water Therapy – the floor is a treadmill that can be adjusted to the desired speed for walking, marching, side steps, etc. She typically did each of those for 5 minutes, during therapy.

 

 

The bottom of the pool is a treadmill that is adjusted to the desired speed.

The depth of the pool is adjustable so the person can do various exercises – lowered to give the most support, raised for squats, lunges, etc. I think she is doing squats here.

The depth of the pool is adjustable so different exercises can be done. Here she is bracing against the side using different equipment to work her core and upper body.

 Here she is bracing against the side using different equipment to work her core and upper body.

 

 

Doing step ups. She eventually had to back off these because her knees and ankles have been hurting.

Doing step ups. She had to back off these because her knees and ankles have been hurting and the step ups aggravated them. Towards the end, they were added back in at lower reps.

This pic is blurry and I apologize, but it shows the  monitors that are hooked up to cameras in the pool so therapist and patient can note in real time how the exercises are going. In Em's case, she can watch for hyperextension and correct it.

This pic is blurry and I apologize, but it shows the monitors that are hooked up to cameras in the pool so therapist and patient can note in real time how the exercises are going. In Em’s case, she can watch for hyperextension and correct it.

 

 

Another blurry pic to apologize for, but this shows how the floor is raised - the patient walks out to the bar and is floor lowers to submerge the patient. When the session is done, the floor is raised and the patient walks off. No stairs, no trouble. Pretty awesome!

Another blurry pic to apologize for, but this shows how the pool works – the patient walks out to the bar and is floor slowly lowers to submerge the patient. When the session is done, the floor is raised and the patient walks off. No stairs, no trouble. They can even push a wheelchair on at the beginning and end if needed. Pretty awesome!

 

 

So, that is what we have been up to for the past couple months. Yesterday was her last appointment but we see the therapist on Monday for a re-eval and will start some land based therapy – looking forward to it since it will be a couple years since she had a course of land therapy.

Hmmm… Now that I am thinking about it,  I guess her last (and first) real course of land  was in 2009 after she hurt her knee, long before the diagnosis – so that is more than a couple years. She had to be dismissed after a couple months  because therapy was only causing her more pain as she deteriorated and she had stopped making progress.  Definitely looking forward to building on the progress we have recently made.

Therapy

We had our re-eval after a month of water therapy, although it wasn’t actually a month and Em only had 6 times in the pool. Hard to make real improvement in only 6 sessions, although it doesn’t take long for her to start seeing minor improvements. But ‘start’ is the key word there – 6 sessions is only a start. Typically, we have had one month of therapy and are sent on our merry way, until I grumble enough and someone sends Em back to therapy and we repeat the process all over again. Needless to say, I have been a bit soured on the whole process.

Anyway, we have a different therapist this time around – I had always made an effort to keep with the same one, so we wouldn’t have to start over with a new one. However, this ‘new’ one isn’t really new, we have worked with her in the past and she is great, she just hasn’t been the one overseeing Em’s care. She is another good friend of my husband’s and someone he greatly respects in the department. So, when I found out we had her instead of our old therapist, I was only the tiniest bit ambivalent but a quiet part of me was hopeful that maybe we would be able to break out of the therapy rut with her. From the first time we saw her a few weeks ago, I had a feeling that the change was going to be positive.

I really like our old therapist, don’t get me wrong – he is great in many ways. But, he just didn’t seem to be able to go past a certain point in helping Em. We really, really like the new therapist – we will call her “J” (I don’t wan’t to use names  or say too much because these are all friends/ colleagues of my husband  and I don’t want to step on toes or hurt anyone’e feelings; it is a bit awkward when we have a preference of one over the other).

She is going beyond what we have done in the past… we are doing an additional month in the pool, then will do some land therapy in which she will address the stablizer muscles that are so weak. I have thought we need to address that since before Em was even diagnosed and she picked up on it immediately. At the re-eval, she commented again how weak Em is and hopes to make some improvement – the pool is a start, but she thinks land based therapy will be very helpful when Em has had some time to benefit from the water.

She is looking at how to get Em exercising in a safe way and has an exercise DVD that is sort of a combo of pilates, yoga, etc that focuses on the small, stabilizing muscles that Em needs to work on.  J doesn’t think Em is quite ready for it yet, but will be working to get her there.

We talked about Em’s feet (in particular, her toe issues, much to Em’s annoyance). J was diplomatic about it, but communicated that the flip flops Em was wearing were horrible for  her. Instead of saying, ‘Hey, just go get a really good pair of tennis shoes and wear them every moment you are awake.’ (which has been the solution offered by the males involved in her care), J went and got a catalog that she knew was laying around.  Being a girl, and fairly young and very cute herself, she had much more cred with Em when she said that she thought some of the shoes were really cute – that she would wear them herself. I will do a separate post about the shoe catalog but, suffice it to say, J opened up a whole new world for Em and I think it is largely because she is female and totally, 100% gets the shoe issue.

I also took Dr Tinkle’s book to her and she was happy to borrow it so she could learn more about EDS. She was also open to the idea that the PT book on EDS might be a great edition to their library. And, she asks all kinds of questions when she is talking to us and clearing is interested in educating herself about EDS.

So, yeah, we really, really like J. Still like C, but I think J is the best choice for Em right now.  I am optimistic about therapy actually helping and moving her forward, instead of being something where we just go through the motions and nothing really gets accomplished!

Em is back in the pool next week and hopefully gets a full month of sessions in before the next re-eval.

Catching up

I have been so busy and more than a little distracted lately; it has been hard to even find a moment to sit down and write. Hopefully things are settling down a bit and I can find a few more moments to post more regularly in upcoming days. For now…

Em has been doing water therapy for a couple weeks, she started May 30 – she has only been in the pool 4 times, two more and then she is reevaluated. That is just not enough time to make any progress and I hope that maybe we can do another month in the pool, but, sadly, that has not been our past experience. Last time, after a handful of sessions, she started saying that she was feeling more stable but then it was over. Very frustrating, but I always keep hoping that it will change at some point.

It feels like we are on a merry-go-round – she needs ongoing water therapy but the only access we have to a pool that is warm enough is through therapy. The doctors want her to exercise daily and have PT and so they occasionally order it for her when I ask, but she gets a month and then is done before she even starts to benefit and we all know what she really needs ongoing water therapy… And round we go.

Sometimes it is hard to write because it feels like nothing changes – I feel like I have been saying the same things for more than 2 years now. Logically, I know things have changed and mostly for the better; the improvements are real. But it still feels like we are spinning our wheels and that gets so frustrating. The whole PT/ exercise issue is one that we just go round and round on and never seem to get anywhere.

Anyway, so far, Em isn’t seeing any improvement from therapy but that is no surprise. She is just tired and ‘tireder’ after therapy. The water seems to help her joints be less painful at the moment, but she has the typical roaming pain afterwards; sometimes her hips, sometimes her knees, etc. The one joint that is consistently giving her problems is her big toe. I think we will mention it specifically to the PT when we go for the eval in a couple weeks because, although it sounds silly to complain about, it is an ongoing problem. It is no exaggeration to say that the feet are to the body what a foundation is to a house. Not sure if they can do anything for it, but it is something we need to  address before it gets even worse.

I am planning on posting tomorrow about the Midodrine that Em has been taking. (Maybe by actually stating that I will post again tomorrow, I will feel obliged to do so!)

 

 

 

The answer was right in front of us all the time. Hopefully.

Funny story.

Wait – a little background first:

I think I have mentioned that Em has struggled with her vision for quite a while. At first, I just chalked it up to normal EDS stuff and really didn’t know how much it impacted her. But it seemed to really cause her more issues as time went on. I was convinced that she had accomodation issues but didn’t know where to go from there. Thanks to Stephanie, at Everyday Chaos, I was introduced to the term convergence insufficiency and absolutely knew that was what Em had and that it could be treated. I just had to make it happen, somehow.  Then the opthamologist we saw was an idiot and totally blew off my concerns and then Em’s appendix decided to go postal, leading to emergency surgery that led to months of recuperation and other serious concerns. Bottom line, the vision issues haven’t gone away, they just got put on the back burner for awhile.

Now… funny story…

Yesterday, while we were having Em’s wheelchair assessment, I couldn’t help but notice the vision therapy equipment sitting around the room, which I recognized from my research into convergence insufficiency. I tried to keep my mind on the wheelchair discussion, but was asking myself – do they really do vision therapy here? As I mentioned in the previous post, this is a building I have spent considerable time in – as the wife of an employee and as the mother of a patient. I thought I knew about the services offered and SURELY my husband, as an employee who has worked there for 16 years, would have known if vision therapy was available through Reid Rehab. Right?

So, as we concluded the appointment, I asked the question that had been on the tip of my tongue the whole time. ‘Do ya’ll do vision therapy here?’ Rick said, yes they do and any doctor can refer us. Then the million dollar question flew out of my mouth – ‘Does Andrew know this?’ Poor Rick, as Em said, he got a deer-in-headlights look that I interpreted to mean he knew Andrew was going to be in trouble if he said yes. Although, in retrospect, it is entirely possible that it actually simply meant he thought I was nuts.

Anyway, turns out Andrew really didn’t know about the vision therapy or that there is an optometrist who does free screenings once a month. (In his defense, Andrew is not a pediatric therapist and works primarily with the geriatric population.) So, the answer to Em’s vision problems literally might  have been right in front of us this whole time. Andrew is going to run down info about how to get her screened and see what we need to do about getting her vision therapy.

Ironic that a 30 minute wheelchair assessment could solve both her mobility issues AND her vision issues. Reid Rehab really is very efficient!

 

Wheelchair Assessment (or PTs are people too)

Our wheelchair assessment went very well yesterday and I am breathing a sigh of relief today. I was a little worried that I would have to fight hard for it and was kind of worked up over it. (I wouldn’t be me if I didn’t worry, so that isn’t a news flash!) The good news is I didn’t have to convince anyone that a better chair is necessary – yet. Insurance will almost surely require a fight but we will just take one step at a time.

The appointment went much like I expected (in my more hopeful moments) and there were no big surprises. Having an inside view of the process is helpful, although, I didn’t really pick Andrew’s brain on this one since he was still dealing with the emotional aspect of his daughter getting a real wheelchair.

On a side note, sometimes being a patient at therapy is just plain weird – the rehab building is a place my kids have hung around frequently since they were little, waiting for their dad to get done with work so we could go out to eat or popping in after running errands to say hi. Em knows many of the therapists as her dad’s co-workers and used to play on some of the very equipment she has had to do therapy on.

So, having my husband’s boss do the wheelchair assessment for Em is just a little weird for all of us. Not a bad thing, just surreal sometimes. For Rick, too, I think – I later found out he called Andrew at noon questioning if the Emily on his schedule was Andrew’s Emily and did she really need a wheelchair? Which, of course, was a very loaded question for Andrew to try to answer. I think people – even people who deal in wheelchairs all day long – are shocked that Em is so bad that she needs one. PTs really are people too.

Anyway, Rick did a brief assessment – really just took down some basic info and talked about what Em needs. He is going to make an appointment for us to meet with a vender so we can discuss our options and he can get help on how to phrase it so that insurance will agree. I got the impression that he thinks a better chair would be a very good idea but that we may have to battle insurance to get it. We will cross that bridge when we get to it.

The only big news from the assessment is that he is leaning towards an electric chair instead of a manual one. That wasn’t a surprise to me, although I fall squarely in the anything-would-be-better-than-what-we-have-now camp. Em, however, is less than thrilled with the idea of an electric chair. I am just asking her to keep an open mind and see what is available. Her shoulders are so bad that just the weight of her arm dislocates her shoulder – Rick tried to explain to her that even propelling herself in the lightest weight chair on earth could destroy her shoulders. I get why she wants to have the ability to rely on her own power and not a battery, but hopefully we can offer her some options she can accept. Another part to take one step at a time.

The other revelation was that our perception of Em as not being prone to falling is a bit off. She doesn’t fall/faint, but apparently stopping a faint by lowering yourself to the floor in a controlled manner is considered a fall. (I knew that, but just hadn’t made the leap to applying that to Em.) So, instead of being able to say that she doesn’t fall, we had to estimate that she had ‘fallen’ 50 or more times in the past year. I guess the truth is just the truth and if it helps her get the right chair that is all good, but that was a bit sobering.

Andrew didn’t seem too upset by the suggestion of electric instead of manual but he didn’t have a whole lot to say about it, so who knows? He did say that he told Rick she probably just needed a lightweight manual one but left it at that. I think he needs some time to process it. Funny how all of his professional knowledge goes out the window when it is his kid or himself.

I don’t know when we will be able to meet with the vender – hopefully we hear soon so we can get the ball rolling. I don’t want to think this is going to be a long process, but I have a feeling it will be. I am buckling in for a long ride – if it happens quickly and painlessly, well, it will just be a pleasant surprise!

A few updates

Been awhile since I posted, so I thought I would do a general update:

Em is continuing to recover after her appendectomy. It still is up and down for her, but generally she is doing well. She still has a lot of stomach pain, particularly when she over does and her pain medication wears off. The Miralax is working very well and has addressed a lot of her issues and she truly wishes she had tried it sooner. [We recommend trying the Miralax in cold apple juice (not too sweet, not too sour) and letting it dissolve thoroughly!] Her appetite is still very poor and she still gets full after a few bites but I think we are seeing some small signs of improvement. Could just be wishful thinking though… The weight loss has slowed and she is hopefully going to start at least maintaining where she is.

Em started water therapy last week and did really well – except that we stupidly scheduled therapy two days in a row for the first week. Seemed like a good idea at the time, but it totally kicked her butt. However, she managed better than I expected and it was a pretty big accomplishment considering all she has been through. She did have a big increase in pain though after the second visit, so we will need to let them know so they don’t add in more in this next week. The therapists are ones she has worked with for the last few years, so they know her and she knows them. And, they are my husband’s co-workers/ friends, which helps my comfort level. At any rate, I think Em is going to really benefit from a few weeks of therapy -hopefully it gets her jumpstarted and feeling better and stronger. She  is scheduled twice a week for the next 3 weeks and then we will see where to go from there.

We had a family event to go to  this weekend and that is always a challenge for Em, especially after her back to back therapy sessions . It involved a 2 hour car trip each way and going to an outdoor party where it ended up raining and cold. But, it was for a very good cause and Em wouldn’t have stayed away for  anything. Seeing friends and family (and having a couple slobbery dogs to love on) is almost always worth the expenditure of energy it takes and I think she enjoyed herself. She will pay for it for a few days but that is better than never doing anything fun.

We got registered for the EDNF Learning Conference, thanks to a ‘donation’ from my parents. With the conference being in Cincinnati, I hated to miss it but just couldn’t see how to afford it. My parents stepped in so we could go and we really appreciate it. Even Em wants to go – previously she has rejected any suggestion that she meet other kids like her or anything of the sort. But she is starting to talk about it and asked to go to the Conference with us. I just don’t see how she would be able to do the full weekend, but I am hoping she will be able to come down for one day/afternoon and maybe participate a little in the kids program. I know it would be good for her so I am hopeful that we can get her there for at least a day. I know I am looking forward to it now that I know for sure I am going!

I think that is all my updates for now – BTW, I am still working on my Emergency Plan and will be posting soon about some ideas I have about making it work.  (See Surgery/ Emergency Tips Parts 1, 2, 3 and 4) I haven’t forgotten and I am working on it! It is a big task but I am anxious to try out a couple ideas and share them with you, if they work!

 

Tired but happy!

I finally am getting around to updating after our very long and tiring week. 4 medical appointments in one week is enough to wear anyone out, but I also have been fighting a nasty virus and barely made it through the week. Frankly, I feel horrible. Em and the rest of the family have already had this, so hopefully it will end with me!

It was a good week but tiring for both of us. As I have already said previously, her ingrown toenail was well taken care of. It hurts a bit and is generally uncomfortable, but is already healing up. The appointment with the new pain management doctor went very well and I am looking forward to notifying Dr. G that we will no longer be needing his services. I won’t get to say all I would like to say to him, but politely dumping him will be satisfying enough.

We also went back to PT. We talked about the possible vagal nerve compression that occurs when she is supine. Poor Chuck, he just kept repeating how complex her situation is – but he didn’t run away screaming, so he deserves a medal! He was able to modify the position that eases her headache. We will be able to have her recline in the recliner or prop up on pillows in bed or on the floor and I can be behind her and help her get in the position. It does rapidly ease her headache – within minutes, her pain can go from a 7 to a 0. The good thing about it is, she can manage her headache – when it starts getting bad, she can put herself into this position and ease the pain dramatically. We used it this weekend when her head got bad and it was very helpful.

As far as documenting the presumed vagal nerve compression symptoms, well, it has been challenging. Seems she is just not very willing to put herself into such a scary position for long enough to record anything. Can’t say that I blame her. So far, I haven’t been able to catch her blood pressure dropping so we will have to see where we go with it.

On Thursday, we went back to see Brian, our neurology PA. He was glad to hear we have found something that helps but he was still concerned about the significant trigger points in her neck. He thought injecting them was a good idea until Em demonstrated that when she gets into the relief position (I am not sure what the official name is… I will try to find out and share it, in case it would be helpful to anyone) the trigger points basically disappear. Once again, she was informed that she is a little out of the ordinary. He said most people with trigger points still have them no matter how relaxed they get. So, he was a little stumped on that one!  We talked about doing regular bloodwork to monitor her CO2 levels until we make sure they are where they need to be – so she will be going in every two weeks until it is managed. In the meantime, I am going to increase her baking soda tablets. I am flying blind with the dosage but we are going to start with doubling her previous dose and see where that gets her. Hopefully, we can find the right balance and make sure the Diamox is working at its highest potential!

I suspect there are multiple causes of the headaches and we are going to have to do some serious sleuthing to figure it out. Again, Brian is more than willing to walk with us on this journey and his confidence and willingness to listen is priceless. We may look at playing with her Diamox dose as we go forward, but for now we are just waiting on the results of the first blood test. He promised he would tell the staff to just tell me the results without any hemming and hawing like last time. Have I mentioned how much I love this guy??

So, all in all, we had a very productive week. I feel like we accomplished a lot and are actually developing a medical team who will help us do what needs to be done. It took me awhile to push through the frustration and despair that had come over me after previous doctor visits, but I am so glad I did! And having some good experiences gives me the strength to push on.

PT and other assorted stuff

Soooooo,

Em’s PT appointment (the first one for her neck/headaches) was today and we actually went. Aren’t you proud of me? 🙂 (Go here if you haven’t read how I totally forgot to go to the previously scheduled appointment.)

Anyway, I held out for Chuck to see her – he has worked with Em on and off for 2 1/2 years and knows her and all of her issues. PT with EDS is always complicated and with the ever present possibility of cervical instability, I wouldn’t trust her to anyone [local] but Chuck. As usual, he set us right at ease, listened to what we had to say and filled us in on his plan.

Turns out, he was about as hopeful  as I was that he would be able to help her headache – which is to say, not very hopeful at all. Funnily enough, the trigger points in her neck which got her sent to PT in the first place were basically non-existent today – isn’t that just typical?

So, we were all pleasantly surprised that when he got her into a position with her head gently tilted back (while lying flat on the bed), her headache actually started fading away. She started with a 6 out of 10. After a couple minutes in that position, it was a 4; then a 3; then a 1. And finally, within 5 minutes, it was gone. Needless to say, we were all pretty shocked that it helped.

I mean, we all know her neck is as unstable as the rest of her, so clearly there are mechanical issues that cause pain. And there are times that her trigger points are visible by just looking at her neck. But, this position is a pretty simple solution – it basically just allows the muscles to go slack and rest. It is now about 3 hours after her appointment and her headache is still a 4. Anything that gives her relief is a good thing as far as I am concerned. He wants her to use heat on her neck and suggested we get a soft collar – which I have been intending to get but just haven’t. He didn’t want to change too much to begin with, particularly since what he initially did was successful – so he just gave us the one exercise to do and we will discuss more next time…

Which brings me to the ‘assorted stuff’…

A little background information first: If you have read Part 2 of the Driscoll Theory or if you are a member of the EDNF message boards, you might know what I mean when I say lying on one’s (if you have EDS) back can lead to a weird type of paralysis/shock situation. Em complained of this long before I had ever heard of Dr. D and we just chalked it up to plain old sleep paralysis. Then, Dr. D started a discussion on the EDNF message boards about becoming paralyzed when lying flat on your back. It was striking – exactly what Em had described a long time ago but had internalized as ‘normal’. When I asked her, she admitted it happened everytime she laid on her back. Definitely not normal.

In a very brief and non-medical nutshell, Dr. Diana’s theory is that the vagas nerve is being compressed by the higher pressure (from CCSVI) of the internal jugular vein, thus putting the body in to a state of shock – BP drops, unable to move or speak, heart rate accelerates, etc. The vagal nerve controls pretty much everything, except for the adrenal glands. So, if you can sit up and get the adrenaline flowing, you can bring yourself out of it. And avoiding lying on your back in the first place is obviously a very good idea.

Which brings me back to Em’s PT appointment today… Did I mention that this simple position that alleviated her headache entailed her lying flat on her back for almost 10 minutes? Plus she was lying down for several minutes previously as he did his initial examination – so she was supine for more than 15 minutes. She starts into this paralysis almost immediately whenever she lies on her back – but it isn’t obvious and I was so amazed that her headache was improving, that I totally forgot this. By the time it was happening, she was barely able to communicate and didn’t say anything about it- until we got into the car to leave – because she still has it in her head that it is NORMAL! I noticed she wasn’t talking much during the exam, but she was responding to Chuck’s questions and I just thought she was getting relaxed since her headache was better. I also noticed that she had difficulty rolling over and getting up, but I just thought she was being careful. Once she was sitting up, she was fine.

I have been on watch for this after reading Part 2, ready to wake her up – to do whatever it takes to get her out of it – but when it happened right in front of me, I missed it. And the only exercise Chuck gave her was getting into this position 3 times a day: he has no idea that she was barely functional when she was doing it. This is so the story of our life!

So, making lemonade out of lemons, on the way home, we discussed it and came up with a plan. First of all, my husband is going to see if he can modify the exercise so she can do it sitting up and we will fill Chuck in when we see him next time. Secondly, she is willing to take a few minutes of being ‘paralyzed’ to get some serious headache relief, so she will only do the supine position if I am right there beside her. I will keep her talking and if she gets fuzzy or stops making sense or stops talking altogether, I will be ready to sit her up and smack her around (figuratively speaking, of course).

But, as frustrated as I am about missing it, I also see this as an opportunity of sorts. I will monitor her BP, before, during and after. We have a pulse ox, so I can keep an eye on her HR and oxygen levels. If I go in and say to Chuck, to the doctors – ” When she lies flat on her back, her BP is very low (giving specific examples) and she feels paralyzed, etc.”, I think it will have more impact than if I say “I think her vagus nerve is being compressed and paralyzing her”. (I usually try to avoid saying things that make doctors roll their eyes at me and the second statement would get me eye rolls for sure!)

Also, assuming her BP goes as low as I think it will, Chuck will be able to document it next time she goes. The silver lining to all of this is that it is a wonderful opportunity to officially document what is happening. If indeed this is what is happening to Em, there are ways to make it better – from simply avoiding lying supine or even surgery.

So, while this is yet another thing to worry about and I once again feel stupid for missing what should have been obvious to me, I am actually pretty happy right now – it is one of those situations where I feel like we might actually be on the brink of making some progress. And Em’s headache is still better, so that is a not-so-small victory. And, honestly, when even the smallest victory is worth celebrating, the not-so-small ones are even sweeter.

 

 

 

Possibilities

Got a call about that intensive therapy program at Cincinnati Children’s on Friday. Seems like Dr. Tinkle and Paula, the PT, feel that Emily would benefit greatly from it. Stephanie, who is the PT in charge of the program, said she was urged to get Em into the program because she needed it. I assume Rebecca, the OT, was one of those who were in favor of Em doing this program.

Anyway, it would be 2 weeks of twice a day PT, some pain management and psychology, and Child Life/Integrative Medicine. It would be a wonderful opportunity for Em – it could make a huge difference in her life. I mentioned her cranial instability/POTS to Stephanie and she said that they dealt with those routinely with this population, so they would manage.

The biggest concern is insurance: our insurance almost certainly won’t pay for it. And if it does, it will cover 60% at the most. There is no way we can pay for this therapy – the bill would be in the thousands.

I mentioned BCMH – which is a supplemental insurance for disabled kids in Ohio. It is diagnosis specific, so Stephanie is hopeful that Em will qualify. When I researched it, I found that Dr. Tinkle is on the list of approved doctors, so I am really hoping we can get this insurance. It would  basically cover things our insurance won’t cover, so that would be a huge help for us as everything at Cincinnati is out of network. It will probably be the difference between Em getting this therapy or not, so I am really praying for it to work out.

Stephanie said she would talk to the social workers there and they would look into it and let us know. I hope to hear from them soon – maybe today. The first available dates for the program at June 13 – 24, so I am doubtful that we will be able to do the first one. There is another one in July, so I am hopeful for that one.

There are a lot of questions we have – what about lodging, etc? Ronald McDonald House is across the street, so maybe that is an option. I would probably go and stay with her, leaving Andrew to go to work and Luke staying home. Em is trying to keep an open mind, now that she realizes we won’t drop her off for 2 weeks!

Trying to be patient until we know more…

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