Ordinary Time

We've been working on making it possible for Y. to learn to drive. She will need to go through various state agencies to make this happen because there is just no way we can pay our of pocket. This has been one of my summer occupations. We are making progress, I think, but it is an extremely slow process.  To anyone who thinks I'm naturally patient, I'm not, but I can fake it when I have to. This morning was one such example. After a very long conversation on the topic, the final question I was asked was whether or not Y. has her permit or her license yet.  I'll just pause while you ponder that. I've been pondering it all afternoon. And then taking multiple deep breaths.  So while I can make a good pass at being patient when necessary, it does mean that my margin for being patient in other parts of life is extremely co-opted. I realize any filter I may have had is virtually non-existent at this point in my life.  And here's my public service announcement for the...

I have nothing to show you in regard to fiber projects. Nothing has happened since last Monday. Well, nothing in terms of fiber. Plenty of other things happened which is why there are no fiber projects to share. And today? Well, when I turned the page on my calendar this morning, I was surprised to find it fuller than I had remembered. One of those items, which I had remembered, was to take R. and H. to the neurologist for their somewhat frequent visit. I had really liked the neurology nurse practitioner we have been seeing, but she told us at our last visit that she was moving into a different field of medicine. I was disappointed because I liked working with her, and because it meant breaking in a new doctor. I have come to loath this process. So off we go, with me trying very hard to take the chip I could feel building up on my shoulder and stashing it away somewhere. I had no reason to believe that the visit with the senior member of the office neurologists would be any less than c...

Today was the big visit to the travel clinic to get typhoid vaccines for the four going to Guatamala. I wish our PCP would just order them because it would be cheaper. Then finding somewhere that had four doses proved to be a bit challenging as well. (And can I just comment on the number of people I talked to on the phone who had no idea what typhoid was?) Anyway, I found four doses and it didn't require going downtown.  It did require taking the tollway, though. Which turned into a chicken and fox on the raft to cross the river problem. Our van is on its very last leg and no one wants to take it on the tollway. Usually J. and I just switch vehicles when this happens, but I had four children who needed shots which meant no one was available to watch H. and R. J.'s car only holds five people which meant that not everyone would fit. Enter my very good friend who agreed to take H. and R. for part of the day.  In the end, four children got their shots. It turned out to be a pleasa...

L. woke up with significant pain in her lower right abdomen. Now, I don't know about you, but this is one of those things which causes parent alarm bells to go off. I'm pretty low key about most medical things these days, often taking the wait and see approach. Pain in the lower right abdomen that caused a child to squeak a bit when I push on it? Not good. Since W. had an emergency appendectomy a while back, it makes me even more jumpy. It makes me so jumpy that I actually called our doctor's office to see if they would rather us come there first. I try not to ever call the office because the process is so horrendous, instead taking care of everything I need to do when I'm physically in the office. This particular phone call was actually quick and painless with the nurse returning my call within a half an hour. We went through all the triage questions and she confirmed my initial gut instinct that this required a trip to the ER.  I have actually lost count of the number...

For the last seven years the month of October has been pretty challenging as far as R.'s behavior. Every year saw a huge uptick in seizures and disregulation and psychosis. One Halloween we spent in the hospital while A. managed to get costumes together for the younger ones. October truly became a month I didn't look forward to and had learned to just expect that I would be sitting on the couch for much of the time helping R. stay as regulated as possible. Last year was the worst we had experienced and was the beginning of the long road back to the ER on New Year's Eve.  But that particular ER trip brought us to the miracle working neurologist who was able to recognize H.'s seizures and psychosis were an actual epileptic condition. We spent a month tweaking some new meds and R. has had nearly a full year of being seizure free. Both J. and I were feeling a little trepidatious about October. That month has been so bad for so long we little dated to hope that the new meds ...

I have read a lot of fluff over the past month. I think I reached my limit, because this is what I picked up to read next.  It's not totally random because I'm teaching a literature class this fall and it is one of the few books on the list I haven't read.  I do realize that I move between extremes much of the time. It's not really a new thing, and I'm more amused by the often odd juxtapositions than anything. However, after another thirty minute (or possibly more) phone call to get these three well child visits to happen, I may need to press pause on Moby Dick and read one more fluffy mystery. I've been keeping track, and I am at well over two hours of phone calls for what should be simple appointments. This afternoon, when the person I was talking to mentioned (again) that it had been a long time since these three children were seen, I finally said, "You probably don't mean it to come across this way, but every time you say that, it certainly comes ac...

I'm back from my long weekend in Arizona. It was a good trip even if it wasn't quite as warm and sunny as I was hoping. (I went to the thrift store to buy a couple of sweaters.) It was still significantly warmer than my family was at home, so not surprisingly, no one was overly sympathetic to my lack of 80 degree weather.  I had a good visit with my mom and also got to catch up with some long term friends... some if whom I've known since first grade. They are all the type of friend who you just pick back up with as if you had seen each other yesterday.  Have you noticed how expensive and difficult flights are to get? To be even remotely affordable (the emphasis on remotely and not affordable) I had to fly at less than opportune times. This meant that I exited off the plane after midnight and didn't really get into bed until 1:30 am or so.  If I was able, I'd just make an easy morning of it, but long before the plane tickets, I had scheduled a neurologist appointment...

Today was our first real appointment with the new neurologist. I'm happy to report I liked him just as much today as I did in the hospital. Rarely have I had a doctor listen so well, take me so seriously, and then have some sort of plan. Usually it is one or two of these things at a time, but very rarely all three. Having a plan is awesome. While he was outlining some different scenarios and what he plans to do about them I could feel huge amounts of tension leave my body.  We have a plan to help R., people! A plan that involves medication for an actual physical issue. Words cannot even describe how that feels after seven plus years of living with a child in distress and no one having any idea how to help or even what was wrong. The plan was always to send us to another doctor who would then send us to another doctor. Here we go 'round the mulberry bush.  I mentioned that sleeping was still a bit difficult and the consistent awaking between 3 and 4 am. He asked some questions,...

Well, there are actually a lot of difficulties that come with a big move. Many of these I feel as though we have weathered and are finally at a place where we are rebuilding our social network. This struck me forcibly from our little month of seizures in December with R. I had (new) friends who checked in on me, sent me surprise Amazon gift certificates, and (tonight) brought us dinner. We also had our visit with our regular doctor today which seems to be a requirement. But I've now seen this doctor enough that I didn't dread the appointment. Instead, he listened to my take if woe, especially in regards to the psychiatrist, and told me I was right. (And we all know how much I like to be right.) He even apologized that a fellow doctor had done that. It was... healing. So things here are actually pretty good. What's hard about moving is not only the leaving of good friends (which is terrible, actually), but what's really foremost in my thoughts tonight is how difficult it...

You get a bonus blog post this morning because I really, really need to document this. After less than 24 on R.'s new medicine she calls to me because she wants to know what letter she is looking at in her coloring book. This alone is more cognitive functioning than we've seen for a month so you can bet I went right over to look. I told her it was an "H". I also mentioned that it was the letter that H.'s name started with. Then she wanted to know how to write it, so I showed her. And she did this on her own. We then went on to "D" because she saw that letter and wanted to know about it. She also drew one which I didn't think she'd be able to do because curved lines have always been challenging. I was then asked what mommy started with.  Umm...  I don't even know what to say. This is not something she was even remotely interested even before last month.  I'm planning on doing my 2022 reading list tonight, but how could I not take a moment ...

For those of you who aren't connected to me on Facebook, I have some catching up for you to do. At 3:00 am on New Year's Day, R. woke up and was having the same type of bizarre psychotic looking behavior that she had been struggling with all month. In an effort to both be believed and to document, we made the call to take her into the ER again. No one was excited by this. Thankfully the ER was pretty empty and we were in triage within minutes.  Having just been in two days before, the ER doctor was not content to just give us Ativan and send us on our merry way. She asked permission to consult with the neurologist on call and we agreed. I believe this simple phone call might have been the catalyst for some major revelations. The neurologist was concerned enough at the description of what was happening to suggest being transported to the bigger area hospital and be admitted for a 24-hour EEG. Being all out of options we agreed. We decided that I would go and J. would head home. ...

When P. took her most recent job (as a groom at a local stable), the position had the potential to come with housing. Today, she (and D.) moved some of her stuff over and she'll sleep there tonight. This makes another child out and on their own. We haven't sorted out what will happen to her room once she has things moved out, though there are younger who have definite opinions on that matter. Onto the letter portion of the title. I didn't blog about it, but since the 26th, R. has been struggling again, this time with behaviors that are out of the ordinary even for her. Like really out there. So, grasping at straws, I googled PANS/PANDAS. I have been around long enough to know this can be a thing and we did spend the past month passing various illnesses around. Well, when I looked at the symptoms, she ticked every single box and the behaviors we have been seeing could all be explained by this.  So yesterday, after my little session with Google, I immediately called our PCP. ...

When R. came home, we thought we were prepared. We had experience with Linear Nevus Sebaceous Syndrome and delays and trauma. Yes, we were over confident. For the first year or two, R.'s behavior was seemingly erratic and baffling. We couldn't figure out what was caused by what, what was correlation, what was adjustment, what was trauma, etc., etc.  The biggest breakthrough was figuring out that R. had both epileptic and non-epileptic [PNES] seizures. This was a start. The next piece was heading to the ER when R.'s behavior was beyond our ability to deal with. Ativan turned out to be the thing that stopped the non-epileptic seizures. We found a psychiatrist and had another prescription that allowed R. enough peace so that we could begin to do some work on attachment and emotional regulation.  There was still the mystery of why, every so often, she would still have periods of extreme disregulation. For the three weeks following Thanksgiving, R. was not in a good place. I...

At this point in our life with R, I think it is safe to assume that if you don't see a new blog post it means one of two things. Either, I have spent the day being R's external regulation system and I'm done in with no margin for thinking or we are needing to actively parent R and cannot even open the computer. Tonight is a variation of both those things, for variety, I guess.  I have some thoughts about what is going on. I also have a doctor who has decided I'm an incompetent parent, but I'm not in a position to fire her at the moment.  I have enough brain space for one small rant. When one is dealing with something like PNES, which literally no one truly understands regardless of whatever impressive letters happen to be after their name, you would think you would default to the people who actually have to deal with it day in and day out.  I have yet to figure out how to describe our last six days without resorting to a string of very bad words.  So indeed, at this...

I truly have lost track at this point, I'm quite sure we are in the double digits and may even be into the twenties. Who knows? I stopped counting quite a few years ago. Today it was R.'s turn. Again. She has been a little off for the past couple of days, so J. took her with him on some errands he had to run since I had to teach a lesson. They managed, but J. felt as though things were starting to fall apart near the end of the errands. But they get home about the same time I am finishing up with my lesson. As I'm standing in our parking area chatting with my friend whose daughter had a lesson, I realize that R. has fallen face first on the gravel and is having a seizure.  I call for J. and he gets her turned around and her face is pretty beat up. My first question is, "Does she have all her teeth?" Eventually we saw that this time she had not knocked any teeth out, but there was one cut that we looked at and both realized needed stitches. (We're rather pros...

Today was my annual eye appointment. I'm happy to report my eyes are healthy. Given past issues and family history, this is not something I assume, so it's a relief each year when it is. I complained about how I was seeing, though. My far vision is just fine. My near vision? Well, it stinks, frankly. Up until this past year, I had been wearing contacts with two different prescriptions which enabled me to see close up. This was mainly because one eye had gotten worse and the prescription wasn't strong enough, so we fixed that. Then I found I couldn't see at all close up and invested in a ridiculous number of cheaters. I'm tired of it. Today we decided to have me go back to monovision with one eye wearing a contact for near vision and the other eye with a contact for far vision. I haven't put the trial lenses in yet, but will do so in the morning. I anticipate feeling a little off balance for a couple of days. I'm not looking forward to it, but am hoping that ...

If you happen to work with families who are raising challenging children, either because of medical needs or emotional needs or both, here are some things to keep in mind.  1. Pretty much every parent in this population is doing the best they can. I don't know a single one who is sitting around eating bonbons and binge-watching TV shows instead of parenting their child. (Note I said instead of. I realize that these are perfectly viable coping mechanisms if you have succeeded in putting said child to bed.) Please do not imply that by not completely your paperwork that we are neglecting our children. There is a very good chance we are neglecting your paperwork because we are NOT neglecting our children. 2. If something on that paperwork seems to be in error, please for goodness' sake, recheck your own numbers first. This population, even if we do neglect paperwork when we can, has pretty much a doctorate in paperwork. We do not want to do any paperwork again. We are meticulous wh...

Surgeries are done and were successful. Both parties are feeling more than a little rough, but that is not unexpected after surgery. R. is still blissfully unaware that hospitals were involved in any way. I always find it a great relief to be on this side of things... even if they were fairly straightforward procedures and my-child-having-surgery experience is now well into the double digits. It's never something to take lightly.  I spent the day being very productive which is pretty much how I handle serious stress. I have finished our school planning, I have finally ordered the rest of our books, I have both checkbooks under control (because what I didn't really think about is when you start your own business, there are financial things to keep on top of there, too), the laundry is nearly done, and those of us going to take D. to school will be ready to leave on Wednesday.  I still need to get my piles of books put away, write actual lesson plans for the co-op classes I'm...

Tonight we had a big family dinner before we take D. to school this week. Everyone was able to be there except TM, whom we missed. So there were just 15 people at the table instead of 16. As usual, people laughed until they cried at least three times. Maybe there were more and I lost count. It's just a think when we all get together. I do love that every dinner together ends in laughter.  One of the things that caused a great of amount of it was the fact that a couple of children have minor surgeries tomorrow. A. is having her gall bladder removed and MC is having sinus work done. Both are out-patient and considered relatively minor. (This makes family surgery number 14 and 15... or maybe 15 and 16... I have honestly lost count at this point.) But even though they are minor, we absolutely cannot mention it to R. R has such extensive medical trauma that just the word 'surgery' can send her into some extreme anxiety, and surgery for people she loves would probably just drop h...

This weekend turned out to be all about blankets... at least until it wasn't, but that will come later. Since we never quite out of the negative digits today, it seems appropriate, huh? It started out because the forecast for this weekend earlier in the week was projecting horrible numbers such as -47 windchill. I wanted to be able to double blanket the horses if that was going to be the case, which meant I had to fix this. These are two long seams on the front of an otherwise decent (and not inexpensive) blanket. The top picture is the far more significant tear, the bottom was fairly straightforward. I managed to get them all sewn up and repaired. They are not beautiful, but it should give me at least another couple of years of use out this blanket. This is the repair of the top photo. I resewed the seam and then found tom webbing to make a cover. The webbing is not as heavy duty as the original, but it will be better than nothing. The cover at the top of the pleat is supposed to ...