"Suffering the Slings and Arrows of Outrageous Fortune"

I’m Back!

After a month-long hiatus, I am finally back. I do apologize for my absence – just busy, nothing major. There are only so many hours in the day and I have had to focus on preparing the registration process for my homeschool group, a tedious and time consuming task. Now that is essentially done, so I am free to get back to blogging.

I will try to give you a run down of what we have been doing the last month, although there isn’t much new.

Em got done with water therapy – I was a little bummed that we couldn’t continue for an additional month, because she actually was starting to see some benefit from it. After a couple weeks, she said she was feeling more stable and dislocating less, so I was thrilled with that. Then we got dismissed and we are on our own again. Bleh. The story of our life.

I did find 2 pools that should be warm enough for her to do her therapy in: our local Y keeps the pool too cool and it ends up sending her into muscle spasms, so she couldn’t continue her therapy on her own there. Both pools are at YMCAs with reciprocal memberships with our own, so that is a big relief – our Y membership that was gathering dust will be put to use and I won’t have to pay anything. I will have to drive 40 minutes to either option, so that is no gain from the 40 minutes I had to drive to therapy, but that it is a relief to have the option. I have to get her a new Y card though, so she can sign in when we go to the pool. The last time she remembers seeing her Y card was almost 3 years ago when she dislocated her knee and had to leave her gymnastics class – she has no idea where the card got to after that. Hmmm, I suppose having her life turned upside down and unexpectedly receiving a chronic illness and chronic pain as an un-asked-for gift is a good enough excuse for losing her Y card.

Her incision from the appendectomy is healing nicely, although she is still having some pain. But, it looks good and the pain seems to be less.

Her weight is still an issue. The weight loss has slowed way down for now but she is still loosing a pound or so a month. She has lost almost 20 pounds since her surgery – in less than 3 months. But has only lost a pound or so in the last few weeks. Her appetite is improving slightly – she is eating a bit more at times, definitely more frequently. She grazes a lot and is trying to eat foods that give her as much nutrition as possible, although her nausea, food sensitivities and preferences limit her options. She has a set list of foods that she can/will eat and that is just that. I do see some minor improvements, so I am somewhat hopeful. I would be happy if she could just maintain her weight.

We saw the pain doctor yesterday – 3 visits with him and I still like him! That is some kind of record, I think! We upped her neurontin because her pain is still significant. We agreed to continue with the Norco, because it is helping, although I am concerned about its affect on the gastroparesis. We talked about the possibility of a long acting med – like a Butrans patch. He isn’t necessarily opposed to it, but wasn’t sure it was the best option at the moment. I left it up to Em and she chose to just up the neurontin for now. We will revisit a discussion about the patch in the future. There are pros and cons and it is a difficult decision, tbh. I don’t love the idea of my kid on narcotics but I also don’t love the idea of her being in unrelenting pain.

We asked for a wheel chair assessment, which he gladly agreed to. It is past time to get her a decent wheelchair – the rental model that we ended up with is just not sufficient. We aren’t 100% sure that insurance will pay for it, but we just have to wait and see. Our appointment for the assessment is the 23rd, although that could change. My husband, being an employee of the department that does the assessment, said that central scheduling almost always messes the appointments up, so he will double check and get it fixed if necessary. I hope it happens in a timely fashion – Em has finally come around and requested a better wheel chair and I want to get it for her ASAP. Andrew is not happy with this issue, but I think that is fodder for a separate post.

She has a new knee injury that is worrisome. Of course, she hurt it just standing, doing nothing. She said it subluxed but it was probably an actual dislocation because she had to work to get it back in. Then she spent the next hour trying to keep  it in – the patella kept drifting out and the tibia kept rolling around. It continued to dislocate after she wrapped it and when she was wearing her brace. The length of this episode was unusual for her, usually her dislocations/subluxations are no muss, no fuss, so this one got our attention. It is pretty painful now, it never swelled much but it is very unstable and just feels not quite right. We are going to give it a few days – Andrew has some exercises that should help the tracking of her patella, but if that doesn’t help, we will have to head to the ortho. On an up note, we will probably get to replace the ortho we don’t love with the one who did my husband’s knee surgery when Em was a baby – he allegedly is awesome. We have been waiting for him to get back on at Reid and now he is. So, if Em needs to see an ortho, it will be him! That could be a serious improvement in our medical team.

So, all in all, no major changes – slight improvements and business as usual. One step forward and two steps back. Y’all know that drill!



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