a hippie with a minivan

Late night last night…

Last night I got all geared up to give Wilhelmina a sponge bath…

and when I say all geared up, I mean it… besides washing her with a cloth when she is dirty on a regular basis, about once a week I do the big clean up. I take her bandages off, I clean up the site where her Nephrostomy tube goes in, clean the glue off her skin and off the tubes, put fresh new bandages on and then clean her all over including her hair…

So, as I started to take the main bandage off I noticed something weird… a bit of the crust that usually accumulates around the wound was near the bottom of the bandage and there was evidence of a yellowish fluid that had dried on the inside of the bandage itself and then I noticed that the sutures that had been holding the tube near the skin were about 2 inches out and near the bottom of the bandage. I took a breath and touched the sutures to see if they would just slide back up the tube but when I did, it was the tube that slipped back into her body slightly. Not a good sign…

I had been told repeatedly that a nephrostomy tube was one of the hardest ones to deal with and that if it comes out it is an automatic ER visit and another one would need to be inserted… So when I saw that it was no longer in the way it should be, and had complete freedom of movement in and out, I knew I had to call..

I quickly bandaged it up so that nothing would move again and called the hospital to talk to the Urologist on call and within minutes I was on the phone with him explaining the situation…

So… at 8:30, we got ready and Wilhelmina and I left for the ER.

We got there at about 10pm and went to pre-triage and she was given the code P2 which is the highest priority you can get without being in need of resuscitation… that meant that we were able to go through the ER process quickly. I don’t think that her case was really as urgent as they classified her but because we didn’t actually have to see a doctor in the ER and just needed a place to wait for the on call urologist, I think that it was the easiest way to do so. After waiting a bit in the ER the Urology resident finally arrived. I found him a bit rough but he was nice, I just have a feeling that he is not used to working with kids much yet.

As I had observed, the tube was moving freely and had slipped out about 2 inches but was still functioning well. He was able to push it back into place and then sutured the tube so that it no longer could move… not to her skin, but to the rubbery plastic layer that is just over the incision. She usually is quiet and still when we are touching her bandages but I have the feeling that his roughness, not being mean but just a bit too hurried, and the fact that it most likely hurt when he pushed it back in, made the experience quite unpleasant for her.

We were able to leave right after and at 12:30am I got back on the road to drive the nearly 100km home…

Tomorrow we are heading back to the hospital to meet up with the head Urologist and make sure that everything is OK…

just 20 days left…

and… we have a date…

Today was Wilhelmina’s appointments at the hospital with the Urologist and the Nephrologist…

I finally met her doctor who, as everyone has said, is so nice and so soft-spoken. He has such a calming nature that it is hard to not be at ease.

Good news! Though she does have quite a bit of scar tissue, her kidney function is at 30-35% which is great and which means that she will be having the reimplantation surgery and in the end will have two functioning kidneys.

We also have a date… the 11th of October, the day after Thanksgiving.

4 more weeks of the nephrostomy tube, about a week in the hospital and then she will be on the road to recovery. She will need a few more tests in the future to make sure there is no reflux and everything is working well, but the worst will hopefully be over soon…

A little update on Wilhelmina…

Wilhelmina is going on 8 weeks with her nephrostomy tube. It is not the best relationship in the least, but she is handling it quite well . She gets caught up in it, is tired of having it attached to her, the insertion site in her back gets itchy with buildup and though she is amazingly calm when I change her bandage, her skin is getting raw and bleeding in a few places because of the tape. She never pulls at it and is mostly always conscious of where it is… she even forgets that her bag is on her at times and starts looking for it… We are all ready for it to be out though, we won’t miss it in the least.

We finished her last course of antibiotics a few days ago and she is happy to not have it anymore. 9 weeks of full antibiotics was quite enough and I am not looking forward to her having them again.

In my last update post I explained that we were waiting for the next test which was the DMSA, well, we did that on Sept 1st and it went quite well. The worst part was that it took 7 times to find a vein to inject the radioactive contrast. It was awful, but the technician in the Nuclear dept. at the Montreal Children’s is amazing. It makes things easier when the technicians and nurses show empathy instead of looking annoyed as has happened in the past…

Once the contrast was in, we needed to wait about 4 hours before doing the tests. We went out for breakfast and then went walking around the mall and just hung out while we waited.

The test was about 30 min long and Willa held my hand and watched the TV and the screen that showed her kidneys while the test was happening and it was over pretty quickly.

On some tests, you can get an idea of what the results will be but this is one that is a bit harder to decipher. Her left kidney lit up quite well which meant that it was all healthy tissue, but the right had much less healthy tissue and only showed up slightly, though that it showed up at all was a good sign…

We only had an appointment with Urology in a few weeks but have a nephrology appointment scheduled for this Wednesday, so today I called her doctor to know if I could have the results from the test by phone… If you remember from that last post. 20% or more function means that she will be getting a reimplantation surgery in which they will take out the defective section of the ureter and reimplant it into the bladder. 10% or less menas that they will be taking out the kidney altogether. Between those numbers is a grey area that will be up for discussion. So these test results are really the last piece of the puzzle to know what the next step is.

Oh, can you believe that I have never met her doctor? Seriously. Since July, during the time that she was hospitalized and every appointment we have had have been with one of the residents or with another doctor that is taking over his patients. Each time we should see him he is either in surgery, on vacation or gone for the day.. Everybody speaks so highly of him though and I have not heard one negative word about him (he is the head of the department) so I am starting to think that he is some kind of mythical creature…

So today I called to see if I could get the test results by phone. His secretary called me back saying that he was gone for the day and will be in surgery all day tomorrow so when I said that I was going to be in on Wednesday she squeezed us in before the Nephrology appointment, so hopefully we will know the results and hopefully finally know when surgery will be…

I can’t wait for this to be over… for her to have a bath, for her to be able to play and get dirty… to get back to normal…

Colin's Carebear essay

I just had to share this text that Colin wrote…

The funny thing about Colin writing is that he doesn’t read yet, but he loves to write. I can’t wait to see what happens when the two click together!

To write, he sits next to me and asks how to spell most words but he often figures words out on his own also..

Half way through, I casually told hom that his “s” was backwards and he corrected himself for the rest…

What Unschooling is not…

It’s September, which means that we are in the throes of the not-going-back-to-school period that seems to be the start of a new year for most. This means that along with all the schoolers, many homeschoolers are writing about the new year, talking curriculum, talking methodology, new homeschoolers are asking questions and many terms are flying around. One of those terms is of course unschooling.

I have already wrote what unschooling is to me…

….it is an ideology and a lifestyle in itself. It is seeing learning in a different way, a way that happens through the learner instead of the teacher.

Let me explain again, unschooling is a lifestyle. It is trusting that children will learn what they need to learn when they are ready to learn it. It is a process of letting go of arbitrary expectations that children should learn certain things at exactly/or by a certain age. It is shifting from the idea that we must teach in order for someone to learn. Unschooling is entirely philosophy in itself and it is as different from homeschooling than it is from school.

To unschool, I believe, that you have to embrace the educational philosophy (whether you embrace radical unschooling/child-led living etc. is then another issue). You have to trust that children will learn everything they need to know and that it may not be exactly what you think they need to know. It is a struggle, yes, and I freely admit that I do struggle with it also, as I still have all of my school baggage behind me and have outside criticism that at times penetrates the barrier that I put up… but it doesn’t change what unschooling is.

And this is where my pet peeve comes in…

What gets to me is not that people don’t know exactly what unschooling is. To be fair, it is fairy complex philosophy and far leap from most mainstream views of learning and there are so many misconceptions around it. But, it is when they don’t know what unschooling is and then still use the term to describe what they are doing or part of what they are doing. Perpetuating the myth that unschooling is basically the time that you don’t care about what your child is learning.

Here are a few quotes that I have seen in the last few weeks just to show what I mean…

“I unschool until they hit about 4 then I start incorporating a curriculum.”

“I unschool kindergarten then add more structure each year.”

Um… that is letting toddler be a toddler…a kid be a kid… it is not unschooling… it’s childhood…

“We do school work in the morning and then I let the kids unschool in the afternoon.”

So basically, you are teaching your kids what you think they need to know and then letting them play/or do unstructured schoolwork in the afternoon. I would define this as homeschooling… not unschooling.

“My kids go to school and then we unschool on the weekends.”

yes… I have heard this said and um.. no!!! again… that is letting kids just be kids and that would mean that ALL kids are being unschooled.

“We’re unschoolers… the kids choose the subjects and then we make a curriculum around that.”

I would call that relaxed or eclectic homeschooling…and it is a great way to homeschool, but it is still parent-led and is not unschooling.

Don’t get me wrong… it is not that I really care about what kind of labels people want use, I really don’t care if people don’t unschool and it is not that unschoolers feel elitist and don’t want people in their club. It’s just that there are already varying degrees of unschooling that using the term is these contexts just cause confusion. Unschooling is more than just a method, it is instead a philosophy and it simply can’t be done part-time.

If an outsider was to hear these statements they would most likely come away with the idea that unschooling is not a way in which kids can learn the “important stuff” and that is sounds like another word for unstructured learning or play.

I mean, the people who say they are unschooling in these statements are saying they believe in “unschooling” then are contradicting themselves in the same breath by saying that they will teach what’s important. Their definition of unschooling has nothing to do with trusting that children will learn on their own, it is just pointing out that their children have unstructured learning periods.

So, when unschooling is put in that context, hearing that people choose to only unschool is basically like hearing that they are choosing for their children to not learn the important things and setting them up for future failure willingly. It sounds drastic, but it is easy to understand that if this is the way unschooling is presented, it is the way that people will understand unschooling and it is understandable that their reaction will most often be negative.

By only hearing such statements, they would never see the possibilities that unschooling provides. They wouldn’t know that unschooled kids can and do learn “the important stuff”. They wouldn’t know that as time goes by the learning that happens is more complex and that as kids grow they will learn more, and learn quickly.

Furthermore, and most important, though unschooling is all about self-guided learning instead of what is being taught, by only hearing the phrases above, people will never know that unschooling can also involve structure, taking classes, using curriculum, having tutors, and even choosing to go to school later on..

Unschooling is just so much more than just “not doing school”.

So I ask you, if you are a unschooler, what do you think? Is it s pet peeve for you also? Do you see the same problems?

What about the others? What is your notion of unschooling?