Time for an update

I thought it time to just give a bit of an update on all of us.

It's going well, sort of. We're happy, healthy, loving the spring weather, praying for rain (without the electric thunderstorms!!), and enjoying the bit of reprieve before the craziness of the last end-of-year exam starts.

So here goes. Firstly, an update about the school situation (afterwards I'll get to the children and their health issues).

We're taking the children out of their current school. My heart is breaking. I'm going to miss the people there so much. I have made friends there, and I don't know how much I'll be seeing them if I don't see them at pick-up time after school or at school events. I'm also going to miss having my best friend's children and my children in the same school. We helped each other, picking up kids when the other couldn't, we talked about the same teachers, the work, the school, etc. And it's gonna be sooooo difficult for our 6-year old boys not being together anymore. It kills me!

But, when I put those feelings aside. I have peace, happiness and excitement about our decision. Like my friend says.... something about it just feels right. She's a teacher at the new school, and she feels that all 3 my kids are just going to be perfectly happy. I agree with her. Which is the nr 1 reason I'm doing this. I'm looking forward to see them excited about school again. Enjoying close friendships, something the 2 older ones haven't had in the past few years. I'm excited to see them excel and do well, and maybe even perform well enough to be proud of themselves again. Or at least be noticed and appreciated by the teachers.

Mr N said something a few weeks ago that hit me really hard. He said that in their current (big) school, you're only noticed if you're academically excellent, really naughty or good in sport. And because Boeboe is none of those three, she's a nobody.

A nobody.

My daughter is seen as a nobody. Nobody cares about her. Nobody sees her. Nobody worries about her. She's just a nobody. Just there. One of the numbers.

How utterly sad and shocking. But true. In a thousand kids, those that's exceptionally quiet and good and never naughty, is pushed to the side. The teachers are just soooooo happy to have a few of those kids in class, so that they have the time to spend on those that's not so quiet and good. And being average academically, means again, the teachers are just so happy they can spend the time on those that's really intelligent and excelling in their subject, or those that fails it so badly that they need loads of extra energy from the teacher to have a chance of passing. So again, the teacher is just really happy when there's a bunch of kids that pass, albeit only just. And ya, Boeboe doesn't excell in sport either, so even there she can't be "seen". So she doesn't qualify for any of the 3 things to be noticed. How sad for her.

It's must be so hard to be an average, very shy, struggling little girl in a big school. So I'm hoping that next year, when she's one of 12 kids, the teacher will love her for being the good one. For being the one that doesn't make ructions. That works hard and tries hard and does her work dilligently. That she will be seen by teachers, peers, etc. Just seen. Noticed. That she won't be a nobody anymore.

So we're all excited about the new school. Boeboe was especially out of skin from happiness when we told them we made our decision (which now makes sense, in light of the nobody-comment of Mr N). All three of the kids wants to go to the new, smaller school. It really tickles me, because what's the chance? Two out of three, yes, but all three? And none of them seem particularly unhappy about leaving their current school. The only thing that came up, is that Monkeyman said he'll miss his 2 best friends.

I spoke to his teacher though, and she assured me that we're doing the right thing. Actually, we were still a little undecided at that point, and she told me that we should do it! Not once or twice, but really almost pushing for it. She knows our history, she knows about Boeboe and all the issues, I took her in my confidence regularly over the years. She taught both boys, and her collegue and close friend taught Boeboe in the class right next door. She knew that we were always on the lookout for ways to help Boeboe, like looking at possible schools for when it becomes really necessary. She also knows about Mr N and the whole grade 7 saga. And she wasn't happy herself with some of the ways the school handled that whole episode. So I understand how she could see that for us, for our family, our three kids, this really seems like the better deal. And encourages us. Even if that means that Monkeyman is taken out of the school she teaches at. I appreciate her candour and honesty and support. She assured us that the trauma of moving schools would be equal to the trauma of moving from grade R to grade 1 (more about this in another topic. Suffice to say, grade 1 is very different in our country, fromhow grade R is. Grade 1 is the start of very formal school. Few, short breaks, wearing uniform, strict rules, much less play, etc.).

I'm a Christian. And somehow, I find all of what happened this past 4 months just a "meant-to-be" scenario. I have known about this school for almost 10 years. When Boeboe's best friend moved there after playschool, at the same time Boeboe started grade R in her current school. I found the setup, the idea of such small classes and so few kids in the school fascinating. I never knew there were options like that in the city. Coming from a very small school (in the country) myself, I would've loved the same for my kids. But there were a number of obstacles which prevented this from becoming more than a fleeting thought. Until halfway through this year, when my friend was headhunted to teach at that school. And she told me about all the changes that this school went through the past 4-5 years. It has grown into a very well-run school. They have their own school buildings and sport grounds now, they have a good reputation, etc. My friend was exceptionally impressed with the teachers at the school, the work/curriculum, the children (their behaviour and friendships and relaxed attitudes - not as stressed as our kids in the bigger school). She was so impressed, that she told me about it, and said she really thought I ought check them out. To her, it seemed the perfect solution for Boeboe. As my friend, she obviously knew about our search for a school for Boeboe that could work with her like she needs to, without it necessarily having to be a remedial school, but also not a prestige, expensive private school. We went to the open days, and voila, rest is history. Doesn't this seems like it were all planned by a Higher Hand? Right time, right place. All our prayers answered.

To get back to the rest of this post, the update about the kids.

Boeboe
Not such good news. :-(  Her bladder function is declining. It's a bit scary (ag, who am I kidding, it's **** scary), but until we have answers, I'm going to try, at least, to not worry. She just turned 11, and the specialists all said that between 11 and 13 girls has a huge growth spurt. So they want to check her out from head to toe before this growth spurt starts. I've organised all the appointments and scheduled it after the exams. Sounds like this is going to include another MRI, a urodynamic study (crapping myself!!) and probably at least one anaesthesia (botox). Currently she's on oxybutynin, immediate release (medication to calm bladder spasms). It makes her a bit weepy, but has definitely made a difference in the nr of accidents. So at least that helps. Unfortunately, it's not just her bladder function I worry about. She sometimes complains about legpain and back stiffness and sensitivity. Some of it seems normal (for her). But sometimes it goes on for days and days, relentlessly. Or she'd make a comment like: "Mommy, I struggle to bend forward, it makes my back feel all stiff and uncomfortable."

Monkeyman
Well, it's like always with him. Some days are tough, others perfectly normal. We really just never see a decline. He is like he was 6 months ago, like he was 2 years ago, like he was as a 2-year old. Never declining. Never getting better. Just there. The unvisible cause of his tiredness.

Something else is bothering me a little bit though. Well, actually, it's irritating him. Some months ago, his dad taught him to cut his own nails. Since then, I never really saw his nails. A few weeks ago he asked me to have a look, because there's something on them that's really bothering him. All 10 his nails had a horisontal groove across it. Quite deep on the thumb nails. He bugged me for a few weeks to find out why he has them, because it keeps getting caught on things, and thus irritates him (it flakes off at the grooves). So eventually I googled. Seems like it's called Beau's lines, and could point to some health concerns. One possible cause could be mumps, which would fit the time line of when he had mumps and the fact that the grooves on his nails are about half-way on his nail already. So consistent with 3 months or so's nail growth. A few days later I checked his toes, and it's on all of them as well. So all 20 nails are affected. This weekend though, I noticed him struggling to cut his toe-nails, so I offered to help. While cutting, I noticed that there wasn't just the one line. On some of his toe nails, there were a few more.

The reason why this worries me a bit, is the fact that apparently it happens when the body are busy dealing with something else that takes so much effort, that it scales down on other processes. Nail growth aren't important, so it's stopped when the body diverts all processes towards dealing with the other process, like an infection, illness, disease, traumatic event like a heart attack, etc.

Now, the fact that growth were stopped for all 20 nails, points to something really invasive, that his body had to deal with. Apparently when mumps or measles is the cause, it's because of the fever. Now, in Monkeyman's case, his mumps was really no big deal at all. He had NO fever. And he wasn't really ill! Much less than a mild cold! Apart from the fact that it took him 10 days after he was better to be able to eat all foods again (since most tasted sour), he really wasn't "suffering" from mumps. It really didn't affect him much. Why would his body stop growing all his nails due to an illness that really didn't make him ill much?? The cardiologist once said that after keeping a watch on him for about 5 months, that it seemed that his heart function took a dip every time his body has to deal with something else, most likely because of a mitochondrial disease. So his body can't cope with any increased energy demands. This sounds very similar to what happens in the case of Beau's lines...

I hate medical mysteries. Especially when it involves my children. My mind said: Ignore it. Right? Sounds to me like it's best, not true? But given the fact that there was more than one line on some toes, and Monkeyman's whole history of pulmonary hypertension, I decided to listen to my heart. So I made a check-up on Monday with his cardiologist. Hopefully it's all just a waste of time and money. But I just don't feel comfortable ignoring a medical mystery with Monkeyman.

We're also still waiting for the pulmonologist to get back to us about the mitochondrial specialist. I'm starting to feel disheartened. Are we EVER going to get a chance seeing this woman, if a doctor can't even get us in??

Mr N
He is doing well. He's extremely excited about the new school. We (his parents) are very apprehensive on the other hand, because they're not doing the normal South African matric. They're doing the International Cambridge Examinations. And before he gets to start highschool, he has to pass grade 7 first! It's going to be a very, very tough exam, so I'm really worried. So much work, so little time to study. Apart from school though, and having to still schedule the orthodontics, there's not much up with Mr N. Oh, and I still need to organise his EEG, but ag man, I procrastinate!!

Peanut
She's just perfect. Talking up a storm. Absolutely hooked on her dummy still. Adores her siblings. She's just always there, always healthy, always fine. :-) Very mommy-attached, but I think it's due to the molars she's cutting. Still not sleeping through. Still not eating well. Still not recognising any colours. Oh, and she sings!! Soooooo cute. When we're in the car, when she plays, when she listens to music on tv or the radio. She's just always singing. Her current favourite is "Let it go" from Frozen. LOL.