In Which We Have A Welcome Visitor

Today was another crazy busy day!  It included a trip to the hospital to drop off one of Connor's hearing aids for repairs, lunch with a couple of friends, yet another trip to the nursery and a whole lot of digging. 

Connor not only slept through the night, but he even slept in a bit this morning!  So I think he's getting used to having somebody in the room with him.  I'm wondering if he'll have some issues this weekend when all of the sudden somebody isn't in there; we'll just have to see how he weathers the transition.

Of course the little guy just started yelling at the top of his lungs, so maybe I spoke too soon.

While I was working out in the garden this afternoon I discovered to my delight a little green tree frog sunning himself right next to my frog statue in the herb garden.  This is the first tree frog I've seen at this house, and spotting the little guy made me really happy because it means that the garden is starting to be able to support wildlife. 

When we first moved in the backyard was practically deserted-- probably because the only vegetation was some overgrown bushes and a couple of trees, there weren't really any flowers, water sources or sheltered places for hiding, and it was obvious by the number of chemicals we found in the garage that the folks who lived here before us favored the "kill everything" strategy of weed and pest control. 

So that adorable little green peeper is a great sign that the garden is starting to support a healthy ecosystem again.  I've also seen at least three times the number of bees in the garden than I did last year, our bird population is booming and the butterflies are making regular visits.  Our mason bees have been busy filling up the nesting tubes, and quite a few of them are sporting little mud plugs at the ends now.  I think next year I'll probably expand to a bigger bee house! 

~Jess

In Which We Have A Night Nurse And I Play In The Garden

The latest spur-of-the-moment purchase: I shall call him Fred.

Tonight will be the first time we have our night nursing!!  You just have to picture that every time the phrase "night nursing" is said, it's in a crazy opera voice with jazz hands and an accompaining happy dance to emphasize just how awesome it is.  Also perhaps there should be fireworks and/or a choir of angels.  You get the picture.

Anyway, because of the night nursing today was going to be awesome regardless of what I did, but it turns out it was a pretty great day anyway.  The sun came out and it was one of those perfect spring days where it's just warm enough to feel good but not too hot to be outside for long periods of time.  While the boys hung out together I took a trip to the nursery and bought a couple of things I was actually looking for and a few spur of the moment things.  I am not exactly a meticulous planner when it comes to gardening-- my gardens always end up crammed full of spur-of-the-moment purchases. 

Once I got home, I took Connor's floor positioner out onto the deck and he hung out there in the shade and serenaded the neighborhood with a mixing bowl and wooden spoon while I played in the dirt for a while.  It was a very satisfying afternoon for both of us.

So I started filling in a few more beds, and very very slowly the garden is started to look less neglected and more like somebody actually has done some work out there.  It will still be a couple more years at the earliest before the beds that are close to finished really fill out and look mature, and I've got a ton of space I haven't even started playing with yet, but it's coming!  Luckily we're probably going to stay in this house forever, so I have plenty of time to make the outside look good. 

Anyway I'd better wrap this up, because even though Connor is still awake and very, very screamy, the night nurse just got here so it's time for sweet, blissful sleep! 

~Jess

In Which Connor Is Still Sick And We Have A Nurse

When I checked Connor's temperature this morning it was at 100.2, which wouldn't count as a fever in any other kid but of course for him means tons of seizures.  So he stayed home sick today from school and we dosed him with Tylenol every four hours.

He had eight seizures today, which was slightly better than yesterday but still not great.  Other than the fever he doesn't seem to have any congestion, which makes me wonder if he's got the same bug that I had a little while ago.  I had a fever, sore throat and a bad headache, though it turned out that it was a virus and not strep throat.  The little was really, really quiet today and he spent a lot of time sleeping.  Luckily most of the seizures seemed to be pretty quick and mild today; we hardly had to use his oxygen.  If he's going to be having a ton of seizures I'd much prefer them to be quick ones. 

Hopefully all that sleep will help him mend quickly and he can get back to feeling better. 

The nursing company was here during three of those seizures; they came to do our intake paperwork this afternoon.  We've been assigned a nurse, and we'll meet her on Friday.  We'll have our first night nursing on Sunday!  It's going to be a little strange having someone else in the house overnight, but I'm sure we'll adjust quickly.  Connor, who usually freaks out a bit about having strangers in the house, didn't seem to care one way or the other today.  He was obviously feeling under the weather. 

We'll be doing a few things to prepare for the nurse, such as moving Connor's medications out of our bedroom, putting a chair in his room for her to sit in and purchasing a video sensor monitor so that she doesn't have to constantly sit in his room in the dark.  Connor will have to do a little adjusting too; he's not used to having someone sitting in his room during the night, as I usually stay out in the living room when he's awake.  I've learned what a seizure sounds like over his apnea monitor, so I'm able to run in if need be.  Of course the nurse isn't going to know that right off the bat, so that's where the video monitor will come in handy. 

So Sunday will hopefully be the start of five nights a week of glorious sleep for me!  Provided, of course, that I can fall asleep without the monitor in the background.  I'm pretty used to the noise now.

I'm sure I'll manage.

~Jess

In Which We Get Some Fantastic News And I Unearth A Chair Massacre

If you'd peeked into the window of my house today around 10:30 in the morning or so, you would have seen me dressed in yoga pants and a long t-shirt dancing crazily around in the middle of the living room in my socks and singing a ridiculous song, the lyrics of which went something like "We're getting night nursing, woo hoo! Doo doo doo doo doo doo doo!" 

It's very difficult to find anything to rhyme with "nursing," other than "cursing," which definitely did not fit the tone of the song.  Hence the "doo doo doos."

Anyway, so we got the call today that we officially qualify for forty hours of night nursing a week, and this is about the best news I've ever gotten in my entire life-- especially coming just after yet another night where Connor stayed up until three in the morning.  I have no idea what the heck I'm going to do with all of that sleep, but whatever it is I'm sure it will be awesome.  Also this is going to majorly cut down on the amount I spend on caffeine every month. 

Okay, so it will probably be a little weird knowing that somebody is sitting around in our house after I go to bed, but I'm sure I'll get used to it quickly.  It will probably take a couple of weeks to set things up, but that's okay.  I've waited six years for more than two decent nights of sleep in a row, so what's a couple more weeks?

In celebration, Connor and I went out to my favorite antique mall and found the last two pieces of furniture we needed for Ellen's room-- a little side table and a chair for her desk.  The chair I found had a beautiful frame, but was upholstered in a pink floral broadcloth that doesn't at all go with our girl's room.  Also we know that she's not a huge fan of pink.  I've recovered a few chairs in the past and it's not a terribly difficult project, so I went ahead and bought the chair with every confidence that I'd be able to fix it up in no time.

You can probably see where this is going.

So the previous owners of all the other chairs I've recovered in the past have been reasonable, rationally-minded people who used reasonable, rational amounts of hardware to affix their chosen material to the wood on the underside of the seat of the chair.  Once I got my chosen chair home and turned it over to take a close look at the underside, it was clear that I was not dealing with one of those reasonable, rationally-minded people.  Apparently the person who owned this chair before me had access to an industrial staple gun and severe anger issues, which is not a good combination.  The cambric on the bottom of the chair was attached with about forty staples, some of which had been driven so deeply into the wood that they were obviously going to be impossible to get out.

So I decided to cut the cambric off, which is when I discovered this:



There are 17 staples in the about three square inches worth of chair pictured here. 
The entire chair is like this.  Whee.

 There have got to be well over two hundred staples in the bottom of this chair.  I think that whoever recovered it last needs to take some courses in deep breathing or yoga, and also maybe not be allowed to touch any power tools ever, ever again.

So I think my best option is to put my new cover straight over this old one.  I kind of wanted to completely recover it because I was planning on adding some more padding, but I can probably just put a layer of batting over the old cover and then nail the whole mess on.  Provided I can find some space for my carpet tacks that isn't already covered in staples.

Sheesh.

~Jess

In Which Connor Goes To Clinic And I Might Actually Get Sleep Someday

Another super crazy day today.  Seems like we've had a lot of those this week!

We got up bright and early this morning and drove down to the hospital for Connor's developmental clinic visit.  This year he was in the neuromuscular clinic, so we saw a developmental pediatrician, physical therapist, neurologist and genetic counselor.  Also the urologist and the head of the developmental peds department popped in as an added bonus. 

Basically the purpose of the developmental clinic is to make sure Connor is receiving all of the treatment and services he needs, and to get a general picture of his overall health as well as current medical issues.  Jer was able to come for the first two appointments, which was pretty nice.  He doesn't get to come to Connor's appointments very often, so it's always good to have him along. 

The basic conclusion the doctors came to was that for the most part we're on top of things as far as Connor's care goes, and that we've got our bases covered with his therapy, adaptive equipment and specialist appointments.  There was one thing that the developmental ped thought we could add to our repertoire as far as services go, though.  Connor is enrolled in the Extended Care Health Option (ECHO) with our insurance so that we can receive the medical equipment that he needs.  One of the things that ECHO covers for certain children is home health care.  Because Connor is a medically complicated child and he has a g-tube pump at night, we should be eligible for 40 hours of home nursing care a week.  This isn't meant to be used for childcare services, and it is in addition and not a replacement of our current respite care services. 

The big benefit for us is that five days a week I could have a nurse come in and monitor Connor at night while I got a blissful eight hours of sleep.  Seriously, eight hours of sleep on a regular basis sounds like some sort of crazy pipe dream to me right now.  I can't remember the last time I got eight hours of sleep five days in a row, but I think it probably happened before Connor was born.  So if we can get that set up it would be pretty fantastic for me.  At the very least it would seriously lower the amount of money I spend on caffeine each month. 

It wasn't all great times today though-- he started getting a migraine after the first hour or so of clinic and he threw up all over me.  Then when the urologist came in and did his quick check the little guy's diaper didn't make it back on properly and about twenty minutes after he threw up all over the place he somehow managed to pee all over my lap and yet mysteriously get none of it on his own pants.  I still have no idea how that happened.  Anyway, we still had about two more hours of appointments to get through, and I wasn't exactly as fresh as a daisy by the end of it. 

The little guy wasn't feeling so hot either, though it wasn't because he was covered in various bodily fluids.  He spent the whole car ride home with his eyes closed and his fist pressed up against his forehead, and then he napped for the next four hours.  I gave him some Tylenol, but sleeping it off seems to be the only really effective way to treat his migraines.  When he woke up he was totally wiped out, and just wanted to spent the rest of the evening curled up on my lap with his head buried in my shirt.  So it was not the best day for the kiddo-- being poked and prodded and then getting a massive headache is no fun. 

Of course now he's wide awake and chipper.  Oh well.  At least I can sleep in tomorrow.

~Jess