End of term again

(This is a post I written in October 2015, and forgot to publish. I noticed it now (in 2016) and decided to still publish it before publishing my newest post, but backdated so that it can stay in sequence and relevance.)

In South Africa, a school year is from 1 January until 31 December. We don't have it from September like some countries. We divide it in 4 terms, each ending with a holiday. So at this moment, we're done with our third term and in our third holiday for the year. Just one last term left, ending in our month-long summer holiday and the children passing (hopefully) to a new higher grade, starting that again in January.

So what happened with us after my last post? Well, quite a bit. Firstly, we took Monkeyman, Mr N and Boeboe all for evaluations at the biokineticist. She said that Monkeyman most definately has hypermobility and quite badly so. Especially in his back. She has worked out an exersize program for him to strengthen his muscles while protecting his joints. I've been very surprised at the kind of movements that's actually bad for him. Like rolling your neck. Or situps. Sometimes, one movement will be totally off-limit, but a very similar one will be great for him. It's all quite complex and confusing. And hard work! Excersizing them for 4x a week. It's difficult fitting it in in a week with everything else going on. A few weeks ago, he hurt his shoulder (a joint, go figure) while practising his tennis serves at his lesson, so I let him rest and didn't do the exersizes. It made me realise how innocent aches and pains can have much far reaching consequences in the children. It's a learning process for all of us.

The bio-kineticist said that Boeboe also have the same hypermobility. She thought it's a little less than Monkeyman's though, which I first thought was strange, as well as informative to know. We still have to exercise her too. Mr N has very slight hypermobility issues. Compared to the other two, it sounds negligable. So at this point, I don't think we'll call him hypermobile, but just keep it in mind that he may have similar issues in the future.

Next we took Boeboe to the cardiologist as the rheumatologist wanted her to evaluate Boeboe for Marfan's. Firstly, her Aorta is perfect!! Within normal limits, not enlarged at all, no problems she could see anywhere on it. It's wonderful! So no Marfan's we need to worry about currently. Unfortunately, she did pick up 2 things. Firstly, the hypermobility is much worse in her than what the biokineticist picked up. She showed us quite a few weird things she was able to do with our daughter's ankles and arms. Her shoulders seems quite afflicted, and her ankles are very instable. Which may be one of the causes of her trips and falls and drop foot. Interesting. So she needs to strengthen those muscles.

The second issue she picked up was that Boeboe's ventricle heart wall is also thinned, just like Monkeyman's. It piqued her curiosity, as its quite rare in an otherwise healthy heart with good function. She assumed that it must be inherited as part of the hypermobility syndrome, so she asked Boeboe's dad if she could do a heart sonar on him. She declared his heart perfect with no wall thinning. So she asked if she could check mine. And lo and behold, it comes from me. My left heart wall is thinned, precisely like Boeboe's and Monkeyman's. I haven't yet dealt with this. Not the finding in my daughter, nor in myself.  I just haven't had the time! Literally. The cardiologist said that we need to check it up every few years, and never do any strenous exersizes. No marathons, no training for any event, no extreme sports, no contact sports, nothing that will push our hearts to extend too much. It may be dangerous or cause damage. She even speculated if that couldn't have been the cause of my mom's heart failure that led to her death. It worries me, obviously. Shortly after the visit, we had cross-country at our school, and I told the kids they're not allowed to participate. It saddened me, and Boeboe tried to participate on the sly. :-( Ai man, this is going to be tough.

So that's where we stand currently. Boeboe most definately has the hypermobility too, Mr N most probably not and Peanut we don't know yet. Boeboe and Monkeyman and me all three have a curious heart condition, and we have no idea if Mr N or Peanut has it too.

Things at school is going well. For me, it was a very busy, very interesting term. I loved getting to know myself better as a teacher. What I learned was that I'm better with bigger kids. I thought kids from around age 10 or 11 would be fine (I always knew I'm not good with little ones under age 10, except my own). But I now also know that I'm best with teenagers, rather than 10 or 11-year olds. I found them cute, sweet, adorable and wonderfully inquisitive. But also nagging, difficult, tiring, loud, noisy, hard of hearing, stubborn and sometimes quite naughty! I had less control over them, and found it difficult to one minute having to discipline a child and next moment they hug me and tell me I'm the greatest. I struggled with the sensory overload that came with smaller ones. The loudness. The noises. The talking! It tired me out soooooo much more than the teenagers. I loved them, and I'm gonna miss them. But I'd rather see them in about 3 years time again to teach them. :-)

Mr N did less well this term. He's tired. You can feel how the year is nearing it's end. The workload is increasing, pressure rising, and he's feeling it. He started to fall behind a little, not finishing homework, and putting in less. But, the teachers all understood, took it up with him and he tried to turn it all around. I'm relieved, he could so easily have been rebellious and undisciplined or disrespectful. Instead, he realised we're all trying to help and he worked with us, to his own benefit. It's a sign of maturity, and I'm grateful.

Boeboe. Well, academically it went really well. In the subject I taught her, she did exceptionally good. And it's not because she got any special tips or help or anything more from me that the other kids didn't get too. Once, when I queried her, she admitted that she was really scared of dissapointing me and making me sad if she were to do badly in my subject. LOL. It made perfect sense to me, so I let her be. Even though her doing soooo well, could cause me more grief than her not doing well would've. :-) In her other subjects she did very well too. Passing everything comfortably enough. She's still not strong, but it's definitely going much better with her than last year. And the amount of work is now really within her ability. Unlike with the previous school. Even though the difficulty is at the same level.

Monkeyman. Oh man, this kid is amazing. His report card looked amazing. 5 out of 5 for everything, except 1 thing where he got a 4/5. You know what I marvel at? His beautiful handwriting. I write atrociously, but as a child, my writing was pretty. And I prided myself on it, even getting the prize end of the year. My eldest two kids, well, let's just say, it's the complete opposite with them. So much so, that it has caused me alot of stress. Now, Monkeyman... his writing is amazingly pretty. Straight lines, staying in the lines, rounded curves, every letter the same size. Just perfect (in my eyes).

But, his actual strength is his math ability. A while ago, he was looking at some of the work I'm doing with my grade 7's, and it piqued his interest. He took a page and started doing the sums himself. Only querying me a bit here and there. And there he was doing grade 7 sums!! A few weeks later, he asked me to help him make a little maths book for fun for him to do. I'll add some pics at the end of the post.

Peanut. The term was a bit difficult for her. She's still loving school. But it took more out of her than what I would've preferred. She was tired. Very tired. Fortunately, our holiday is/was almost 3 weeks long! More than enough time for her to rest and relax and spend time with me and her siblings. And next term, I have much less classes again. I'm done now with the 2 subjects I helped out with for just this term. So there will be much less demand on her and we'll spend more time together again. I'm looking forward to it. Apart from being tired, it's going well with her. She still has her very best friend. It amazes me, that two little girls age 3 can bond like that and stay bonded. Playing together almost every day, every moment they can. What also amazes me, is how healthy Peanut is. She just started school the first time this year, at age 2.5, and she hasn't been to the doctor once (touch wood!). She hasn't needed any antibiotics. Oh, she did get a few colds, about 3 or 4 times this year. But everytime it was self-limiting.

There's one other thing medically speaking that's been on my mind the past few months. It really kinda hit home this past weekend. We were camping and I was watching the kids next to the swimming pool. Boeboe was sitting with her feet dangling in the water with her side towards me. Her back in perfect profile. I was watching the curve of her spine, following it from shoulders down to the coccyx. It made a very normal, perfect curve. Outwards at the shoulders, inwards just above the bum. I've noticed how this curve was formed over the past 4 years, and it never fails to brings me to tears. When she was a very small child, I noticed how abnormally straightened her back were. When sitting at a table, it would look like she swallowed a long ruler. Literally. Her back had absolutely no normal curvature. Just one straight line from the coccyx up to the shoulders, where there would be a more normal curvature to the shoulders and neck. Some of the doctors noticed this, like the one peadiatric neurologist who otherwise said she's fine and definately doesn't have an occult tethered cord. It was also noted as something like "loss of normal lordatic curvature" on her MRI, and dismissed as not important. Motherly instinct said otherwise. But hey, when did a mother's instinct count for anything in the medical world? ;-)

Since the detethering operation, this has changed. For 7 years, she sat straight as a plank whenever she sat down at a table or on the floor even. Since then, for the past 4 years, it has started to change. Slowly in the beginning. I can't even remember when I first noticed the changes. But now, she will slouch just like any normal child, especially one with hypermobility syndrome. Her shoulders will hunch, her back bend like a little cat, when she's lost in thoughts, sitting at the table. Or when standing up, her bum will be pushed backwards, carrying the weight while the tummy is pushed forward. It's amazing. Obviously, it would've been better for her posture, and for "beauty-standards" if she could've held onto that straight-back profile. But knowing that it meant a pull on the cord, I can't help but be happy that it's gone. I don't exactly understands the instricacies of why her tethered cord caused this, since it's somewhat the opposite of what it usually does. But what I do know, is that her straight back was abnormal and a sign of the tethered cord. And that now it's gone. The operation fixed what was wrong and caused her back to recover and developed normally. A fantastic thing, in my opinion. Isn't it amazing, this whole occult tethered cord and detethering and all these little signs?

Like he says at the bottom, he's grade 1 currently (age 7). Amazing,
how he just cottoned on to algebra without a proper foundation yet! He just
instinctively understand numbers. It's lovely to see. Especially his enjoyment
in maths.

My two adorable daughters. So crazy about each other! Its such a reassuring
thing to watch, knowing that if anything were ever to happen to me, my baby
will still have her older sister, providing her with as much love and comfort as
any mother ever can.

I added this just because it's such a lovely pic to me.
She loves softness and animals sooooo much, so
combining the two in this cat is precisely what my
daughter is about at this age. So kind and sweet
and gentle. Instinctively, animals realise that she
only means them well. She would've made a lovely
vet one day. This pic was taken when the girls in
her class were absolutely horrible to her. The cat
provided her with acceptance and comfort on that,
day and the fact that the teacher noticed it and
took the picture, warmed my heart.

Joint Hypermobility Syndrome

That's what Monkeyman has.

We have a diagnoses.

At long last.

I'm tired. So tired today. Emotionally overwrought and drained. Yesterday, I was ecstatic. Only a mom (or dad) that went through something like this, can understand being ecstatic to get that diagnoses.

We always knew something was wrong. People called me names (yes, I was called crazy and psycho by a supposed friend), because I was searching for answers for my family. We knew there was something wrong with Monkeyman. We lived with him. We saw it every day. We were the ones having to dry his tears because his legs ached. We were the ones who had to watch him lie down on the couch, because he were too tired to continue to play with his friends, siblings, even us. We were the ones that saw him lying down in a restaurant, while all the other children were playing in the play area - a child's dream. We were the ones who had to see this disease drag him down. The ones that had to hear how tired he is at school. The ones that saw him pale and exhausted. It was never a question (to us) IF something is wrong. But what's the NAME of what's wrong. Only a parent in our situation would understand the need to have that label.

Now, we have it. Out of the blue. Unexpectedly.

A friend told me a few days ago "Some doctors judge, instead of help"... Yes, that's precisely how I felt after our visit to the supposedly great dr Mitochondria. She added absolutely NOTHING to our lives. Just relieved us of some money, and caused me to stop looking for answers. Because she judged, instead of helping. Oh, she agreed something must be wrong for him to be so tired, and to turn pale while sitting still at a table, while colouring in. But she refused to entertain the thought that it's a medical condition she can't figure out. She created the impression that we'd be silly to keep on looking, because clearly it's not really something or anything important. Yes, I'm angry. Angry at her, angry at that supposed friend who called me a psycho, angry at the situation that made me give up. Angry at myself, for wanting to give up. Mostly, just angry at myself. I fought for Boeboe, and almost gave up on Monkeyman. :-(

Fortunately, my husband never gave up. A friend of his urged him to take Monkeyman to a pediatric rheumatologist that she knew was good. To become a pediatric rheumatologist, you have to be a GP, a specialist physician, a rheumatologist and a pediatrician! You have to be good. And she was. Good to us. Good for us. Good for Monkeyman.

She said as I recited his history, that she was already thinking "hypermobility syndrome". He ticked all the boxes!! After her clinical evaluation, she was certain. And not only him, she also diagnosed his dad!! It's a genetic disease, he inheritted it from his daddy. His dad knew everything about always feeling tired. Even as a child. Maybe that's why he wanted to keep on looking for answers. He wanted a better life for his child. He didn't want him to feel like that, every day, rest of his life. So he kept on fighting for his son. I'll forever be grateful to him, that this time, with this child, he was the one that kept on fighting. When I couldn't stand the social pressure anymore. The guilt other people puts on you. The drs that judge, instead of help.

So what is Joint Hypermobility Syndrome or JHS? Well, what makes us so excited and happy to have answers at last, is the fact that it's not lifethreatening!!! Monkeyman WILL BE OK!!! Yay yay yay yay yay!!!

Unfortunately, as it's a genetic fault, it's also not curable. You live with it. But now that we have answers, we can do our best with what we have to deal with!! For example, the dr said he must immediately get to a biokineticist, that will strengthen the right muscles. This can help with the tiredness, as well as prevent conditions like migrain to appear. She said my husband could've been spared that, if he was diagnosed as a child and taught how to strengthen the necessary muscles. We also now know why Monkeyman's reflux is so particularly bad, and why he is on such high doses for his age. She says (like the pulmonologist) that he has inhaled his stomach contends all these years (it's clear on the x-rays accordingly to her), and we must always treat it aggressively. Some things he has to learn to manage on his own, and find the best ways for his body. Like the constant vague nausea he experience. Some things we can try and help to improve, like the tiredness. He already paces himself very well though. When he's tired, he must rest (he does) and when he has rested enough, he must do something (which he does). We should help him to participate in sports as much as he can and wants to (which we does).

He also has a second diagnoses, though we don't have an exact name yet. He has an autoimmune problem where his body seems to attack his own neutrofils. She says we can do the necessary tests to find out exactly what type and get a name, but it will be R3000 - R4000 and a name will just be that. A name. She says the pediatrician has already tested everything that something can be done about. All tests that remain, are for those that they can do nothing about. She says it seems like his neutrofils are diminishing as time goes on. Usually such children falls more and more ill during their teenage years, and then he'll need to go on prophylactic antibiotics. But until then, the a/b's will just do more harm than any good, since he's quite a healthy child at this point. Very healthy in fact. So for now, we declined to spend the money just to get a name, and we just accept he has an immunity problem that may cause him problems in the future. If and when that happens, we will take it from there. She says, the immunity problems apparently goes hand in hand with the hypermobility syndrome, but how and why, they don't know yet.

I still have a load of research to do. I can google again!! I can look at symptoms and treatments and recommendations. It makes me happy. To know that we can finally have some answers. For now, there's two things that stood out for me.

The first is that 10-20% of people have some hypermobile joints. But most of them, has no other signs or symptoms. A small group of them, has symptoms other than being able to bend your joints into apparently impossible angles. Some people, like Monkeyman and his dad, has tiredness, stomach issues, nausea, GERD, etc. And the hypermobility itself isn't even so severe. They can do slightly freakyish things, but nothing too weird. Like Monkeyman has the typical Y of JHS. His arms bends more than 180 degrees as the elbows, not a straight line as it's supposed to when you make a Y. He also has the little "angel wings" - his shoulder blades.

Part of what causes some of the symptoms, is the body that overreacts for some reason, and floods itself with adrenaline. This gives a burst of energy, and when it's depleted, a wave of exhaustion. Until the child has rested and gets a new burst of energy.

His legpains are most likely caused by muscles that's overworked because it has to support the ligaments that's failing to do their job, and counteract the joints movements. The poor muscles can't keep up and gets injured. Then heals overnight, just to get injured again the next day. And the next. Every day, all the time. You can just imagine how the muscles ache. So my instinct that said "this is NOT growing pains", was right. We were right. Something was clearly wrong with our boy, it wasn't our imagination or because we wanted to find something wrong.

Interestingly, anxiety is also listed as a symptom of Joint Hypermobility Syndrome. As is tethered cord (or spinal issues). So guess what.... the dr asked us about our older two kids as well (they were in school and did not accompany us to the appointment. And she's pretty sure that at least Boeboe has the same disease, but most likely Mr N as well. <*insert totally shocked little face in here*>

I still need to process this. Then the dr asked if we had any photo's of the 2 kids on our cellphones. She gave Boeboe's photo one look, and said "She has the Marfan look". She said as I was speaking, she was starting to think our daughter may have that. And after the photo, she believes it's a very likely possibility. She asked me to measure her armspan at home, and if it's longer than the height, chances are good.

So we measured her last night. Her height from head to heel is 141cm. Her arm span from fingertip to fingertip is 143cm. Just a little bit longer. The very surprising thing is that not only is hers longer, but her dad's too! He is 179cm, and his armspan is almost 187cm. So yeah. What to make of that....

The dr told us to take Boeboe to Monkeyman's cardiologist, to evaluate her for Marfan Syndrome. Gosh, this is scary and overwhelming. We thought after giving up on finding what's genetically wrong with Boeboe, that we're ok with not knowing. That we're done with doctors for her, for now. Done with this rollercoaster of hoping, praying, either for answers or for something to be nothing. We didn't want to go through that again. We couldn't face the continueing process. So we stopped and accepted it and moved on. Now... well, what would you have done? The things is, Marfan can be deadly. Apparently, not being diagnosed gives you a life expectancy of 32. Once diagnosed, the medical treatment prolongs this to an almost normal life expectancy. So if, IF, this is Boeboe's final diagnoses, shouldn't we know rather sooner than later? How can we take a chance on her dying early because we didn't want to know if she has Marfan's or not? But, she doesn't have ALL the signs. So really, what's the chance of her having this? Wouldn't the geneticist have said it already? Her arms and hands and fingers looks exactly like that of other Marfan's children. I specifically asked the geneticist WHY does Boeboe has such strange looking hands? Her fingers are long, thin and tapered. It does not thicken at the knuckles. Her palms are so small, that it looks like her arms is forming one straight line from her wrist to her pinky. The palm isn't broader than her wrist and fingers, like it's supposed to be. She also has a way of using her hands, that looks definitely "spidery" like they're describing Marfan children's. Shouldn't the geneticist have thought of this, if it was a possibility?

For now, I'm just going to concentrate on having Monkeyman's diagnoses. After 7 years. Two years of actively searching. To understand WHY he was the unlucky child who would develop Pulmonary Hypertension from enlarged adenoids. Now, it makes sense. And now we can be viligent. Now, we can help and support him. Catch anything that might crop up before it causes damage. We can do our best for him, because we have the label we so desperately wanted and needed. Now, we know what he needs, and what's not good for him. Because of that small little label. Hypermobility Syndrome.

Still breathing...

We're alive. :-)

...and kicking! It has been an extremely hectic term, so I just didn't get to blogging. We're all fine though. Work is still awesome!! I'm loving every second. So much so, that when they asked me to help stand in for one teacher next term, I immediately agreed. It's just 2 extra subjects, and just for 3 months. I'm sure I'll cope. I'm actually looking forward to the challenge! And to get to know the kids in the other grades as well as I've gotten to know the grade 7's and 8's.

I'm sure you're not here to read anything about me though, so here's the updates on the kids.

Mr N
He's happy. So happy, that he voiced it to me! And if you know him, you'd know how RARE that is. He must've been feeling really happy to tell me that. :-) He loves the school. He loves the teachers. The subjects. The kids. The work even! He enjoys it. He told me he can't wait to go to school every day. And that he doesn't understand why the kids stress so much about the exams, because honestly, there's nothing to stress about, since there's so little pressure compared to what he had to deal with last year!! It makes me so happy, so grateful, but also so sad for him about last year. Grade 7 is the last year in primary school before moving over to highschool. It's suppose to be one of your best years in school. Where you're the eldest. The "main men". For Mr N, it was just stressful, sad and awful. So I'm so glad he get to be one of the "main men" in his new school. Anyway, I'm not going to go on too much about Mr N. I'll write a whole separate post about his school one day. Suffice to say, my eldest is in one of the happiest phases of his life so far. And that, of course, makes us as parents so happy.


Boeboe
Well, she's the one doing both well and badly. The friends. I knew it was a question of "how long" before the kids realised she's not on their level. And they start to push her to the side. It started early this term and lasted weeks and weeks. I spoke to the kids. The teacher spoke to the girls. They asked, begged, pleaded, scolded. It made no difference. Boeboe was in tears every day. Then, somehow, things got better and they were all friends again for about a month. Out of the blue, it happened again. This time, I went straight to the principle. She was really shocked about how the other girls were treating Boeboe (things like running away from her during breaktime or calling her names). She had an extremely harsh, but honest talk with the girls. They were in tears, and felt so bad. Since then, Boeboe was included and accepted again. Then our winter holidays started. So we'll see how it goes next term. I'm sure though, with the principle on our side, Boeboe will be ok. I'm so grateful. Because my heart was in pieces every day.

You know what she asked me one day? Mom, why are you helping me with this now, but didn't in my previous school?

That hurt. Oh Gosh, that hurt.

Of course I helped her, she's just a child, I don't expect her to know of all the times I went to teachers, handed her the tools and knowledge to deal with it at school as much as she can herself. How many research I did. How many times I asked other moms for help. Physically, or just for advice. How many times I organised play dates. How much money I spent on the psychologist to help pick up the pieces. Etc.

Still, she believes I didn't help much. And perception is everything. It hurts to think that's what she believes. And it makes me feel like I did NOT do enough. :-(

I do believe that there was a number of things at play last year, not just friends. She started the new bladder medicine, and I immediately noticed it having a depressing effect on her (we only realised how much earlier this year, once she was taken off from it). She was also struggling academically, and under huge pressure to pass all the exams. So all in all, it was a very horrible, difficult year for her. And our focus slipped a bit, due to her brothers needing our support so much.

It's going so much better now. She's maturing, she's calm, much less tantrums, she laughs more, she plays more with all her siblings. Everything is going so well. She's participated at the school in sports, where she never really got a chance at the previous big school. Here, she's part of the team!! And a valued part! She plays netball, and surprised us with how much her ball skills and footwork has improved. She absolutely loves her school. She loves her teachers, everything. Academically, she still have to work hard. This school isn't remedial. It's private, but with a very high standard of work. The reason why we moved her, was because of the more individual attention, due to much smaller classes. She was never in very big classes, which is one of the reasons why she could (barely) cope in the mainstream stateschool until grade 5. They tried to keep classes around 25. It rose to 33-34 in grade 7, and we knew that would be a major drawback for her. Now, she's in a class with 10 pupils. 5 Boys, and 5 girls. And that's the WHOLE grade 6! That's the difference for me. Not just the small class, but the fact that the teacher does not have 300 kids' books to mark, 10 classes te prepare and present every day, etc. There's just 10 of them, and you can give your everything to that 10 kids. Boeboe has done SO well with this. She can now concentrate on understanding what's said in class. While in the class of 24 kids, she missed so much because of more noise and chaos around her. Anyway, so she still works really hard, academically. But it pays off, and we're not worried about her report card (which we'll get in 2 or 3 weeks).

Monkeyman
At long last, he has really found his place at school. He is SO happy there. He loves loves loves it. He loves the work and learning, he even loves writing weekly tests (and still only get full marks). He loves his teacher. He's made something like 11 friends (hahaha, who's counting?). He loves the afterschool activities there. Even tried his hand at needlework! ;-)

So what's the problem? Well, the usual. The tiredness. It's really not going well in that department. The vitathion helps. It helps loads. But it doesn't take it away. A week ago, we visited friends and he played outside with the other kids for a while. Not all the time, but a good while. We got home, and he lied on the couch playing games for 4 hours before bedtime. I put him in bed and wanted to read to him, but he first had to fetch the books from his desk. He climbed down the 5 steps, chose a book and started to climb back up passed me, where I stood at the bottom step. He was breathless. Totally. He had to take deep gulps of air, and rested halfway up the steps. I was surprised and asked him why he was so breathless? He replied that he is really tired "because he played a lot outside today". And that his legs were (like always) tired and aching (while he stroke over his shins, like always).

That worried me. Alot. Really worried me. What child cannot climb 5 stairs down, and up again? After lying down for 4 hours on a couch?? Even if he played outside earlier the day. He rested for FOUR hours, and then got breathless climbing down 5 stairs?? What??? How's that even possible for a 7-year old?

If this was a single incident, I would've ignored it. But there's too many such incidents. It's also not just me, or his dad. Earlier this year, they had athletics. One day, I was a bit early fetching him from athletics practice, so I sat watching. And my heart broke. He was.so.slow. Not slow like an unfit child. Not slow like a bigger boned, or bigger child. Not slow like a non-athletic akward child. No. He was just slow. Like he was running through deep water. Like he was pushing his hardest, but couldn't make headway. Like he was running fast, but in slow motion. Does this make sense? There was something so sad, so wrong, about his running. There were the fast group that was miles ahead. Then there were the bundle in the middle. Then there were the slow kids (mostly those that's really overweight and unfit). And then there was Monkeyman, miles behind even the last kids before him. He was a group all onto himself. Tiny, frail and so pale and tired.

I watched this a couple of times after that first time, and it happened in every practice. So I one day broached the subject, asking him if he's enjoying the athletics practice? Because in this school, I said, it's not compulsory. They want and prefer all kids to participate, but you can choose. He immediately said he loved it and wants to continue! Well, that was settled then. I thought.

Until the teacher approached me about a week later. Telling me quietly, that if I want to take Monkeyman out of athletics, I'm more than welcome. She'll understand, and think it's for the best!

Wow. That placed me in a very akward position. So I decided to be candid, and told her I realise he's not making it, but I asked him and he's really enjoying it and wants to participate. So she agreed that he should then continue. Thank goodness. I was already anticipating having to tell him he's been asked to leave. :-(

In any case, this just underlined it for me. There really is something wrong. He can't keep up with even the slowest of the slow kids. He's not just bad in athletics. He's unable to do it. They helped him by letting him stay with the teachers after the first round, not expecting him to do all the excersizes needed, etc.

Second term, he declined to play cricket with his class, nor rugby or any other sports at the school. :-( I'm hoping to get him into the 3rd term's sport, but we'll have to see. The one thing he has participated in, and will continue, is the professional tennis lesson we're letting him do for 1 hour a week. He loves that, and seems to keep up well. They're a big group, and usually have to take turns, so he gets to stand around enough, waiting for the other kids' turns, to be able to cope well.


Peanut
Ag man, she's sooooooo adorable at the moment! The cutest, cutest thing. She's funny! She's sweet. She's a wise-ass!! :-) She's talkative. Loving. And absolutely crazy about school. Her best friend is still her very best friend. She loves her teacher. She loves going to school. She's mostly healthy (just a cold here and there). She's growing up way too fast! Almost turning 3. Still adoring her siblings. And still singing "Let it go" whenever and wherever. Hahahaha. Too cute.

So that's the kids. Still the same, nothing new really. Except that overall, they're really, really happy at the new school. And me too. :-) I had one bad little experience mid-term. I went back to the dr, because the symptoms I've been complaining about for years, and that was most likely due to my arrythmia, was turning worse again. The dr was quite surprised at how fast my heart was beating again, and said he's suspecting iron-deficience. So I went for bloods. Next day, he phones me and told me to get myself to the hospital asap, and that he thinks I'm a bit of a "walking wonder", as I'm supposed to be man down with blood results like that. My iron was non-existing and no stores left. Which caused my body to stop manufacturing red blood cells. My homeoglobin was 6. Usually, a woman my age should have a minimum of 12. By 10 you have loads of symptoms and need treatment immediately. By an 8, they give a blood transfusion. Mine was 6, so no questions asked, no choices given, it's either a blood transfusion he said, or I'm going to go into heart failure within weeks at the most. It was such a schlep, having to quickly pack, organise with work that I'm going to miss a few classes, and make sure Peanut is allright. Shame, she's used to having me with her at night. But it went well, she was absolutely fine with her daddy. Even when he had to drop her off at school next morning. It was such a relief.

The blood transfusion wasn't fun. They have to check up on you every half an hour, to make sure you're not having an allergic reaction. So not much sleeping, LOL. And the stupid needle perforated my vein, and the very last few drops of blood went into the muscle. It's now a month later, and I still have pain in the hand. I can't lift anything heavy, then it aches and pains for hours on end. They also gave me an iron transfusion, a few sachets of saline and the 2 bags of blood. It was a surreal experience, watching someone else's blood flow into my veins. I felt both nuaseated at the thought, as well as grateful. My body hated it though. Absolutely hated it. I felt like I went into hospital healthy, and came out feeling sooooo ill. The dr said my heart struggled to cope with the volume and thickness, it got used to very little and very thin blood over the months. It was already starting to show signs of heart failure, so I was "just in time". Scary, hey? It took me the best of about 2 weeks to feel normal again. Without the awful ache and pressure in my chest, the dizziness and headaches to dissapear.

We're on holiday now. Enjoying wonderfully good weather. It's warmish (for winter!), sunny, no wind, no rain. Such fine weather. I'll post a few photo's of the kids next time.

Happy!!

I didn't know what other title to give. This is how I felt the past 3 months. So happy, that I can barely believe it myself. Yes, there's things that would make me even happier. Like if my kids would magically have no problems or worries or health issues, etc. But, being a realist, I know that's not really an option at this point. So I'm taking what I can from life. And I'm grateful for having had such an amazing three months.


So what's making me so happy? Well, my new job of course! Which is also the reason I'm so quiet on here. I do apologise. When I look at the stats and see how many people log onto this blog every day and week, then I feel really guilty. I'm very sorry. I have so much to say, but I was spending hours and hours on my work last term. Mornings I was in class or in the office provided for our teachers when we have off periods, and afternoons and evenings I prepared for lessons, researched future ideas, marked tests or homework or computer programs, doing paperwork, planning the week/term/year/projects, etc. etc. And of course still spend time with the kids, helping them make the transition to a new school, helping Boeboe with her exam, helping Monkeyman with his first formal year of schooling with homework and all of that.


Even though the new job took MUCH more of my time than I ever thought it would, I enjoyed every minute. Every little thing. Preparing for my classes, presenting and explaining to the kids, marking their books, setting up tests, researching new ideas and projects for the computer science class, learning new languages and platforms and technology, etc. Everything. But most of all, getting to know these wonderful young human beings, and building a relationship with every child.


I feel like I'm in 7th heaven, and so scared that somehow I'm gonna loose this job, or loose the feeling of loving it so much. :-) Silly, I know. I'm already looking forward to the new term that starts tomorrow. Though, the holiday of this past two weeks was really nice. We went camping next to a river for a week, and then were at home for Easter. Just playing games every day. The past week I rested. Slept late, read a lot and just relaxed while the kids had friends over every day. It was good.
So that's all about me. How are the kids doing, you want to know? Mostly, just as fabulous!!


Mr N
He's in a wonderful group of grade 8's. He has friends, he has value, peers are liking him and looking up to him, teachers noticed one after the other what a clever, responsible and good boy he is, and he gained confidence. He's very happy! As happy as I last saw him in grade 4, before everything went pear shaped with the new curriculum and his old school growing so big. He looks forward going to school in the mornings, he likes his teachers, the subjects, the whole setup of the high school. We did the right thing for our boy! He would've disappeared in the big school we first wanted to send him to. Just another quiet little boy. One of 400 other grade 8's. Nothing special. Now, he's noticed, appreciated and stimulated. I need to post more about him, and the subjects he chose, and the school, the Cambridge curriculum, us teachers what we do, but I'll keep that for another day. His report looked soooo good. He has something like 3 subjects in the 90's!!! 6 A's!! And nothing under a 60%! Do you know what that means? You have no idea the relief, happiness and wonder this brought us. I really need to post about this. The whole school situation of our country. A follow-up from my previous school post last year. But not today.


Boeboe
Wow. That's all I need to say. Exactly what I've hoped and prayed for, has happened. Socially, she was immediately accepted and pulled into a small group of friends. They're 5 girls (in grade 6), who spend every moment together. Amazing. They're on her level!! Academically, she has also improved! She now has time in class to write slower, so it's more legible, her work is neater, her books are neater, she already gets better marks because things are explained slower and more repetitively (possible with only 9 kids in class, impossible when they're 20 or 25, like in the previous school), and they get more time to finish homework. Thus, MUCH less homework in the afternoons!!! This is one of the biggest advantages to ME! So I have time to do my work in the afternoons, because I don't need to help Boeboe so much. She's taught in class how to do what's needed, and doesn't need to ask me. She spends about 30-60 minutes some afternoons, compared to hours most afternoons previously.


She's doing so very, very well, that I feel like I'm holding a glass bird, that I just do not want to drop, because it's too beautiful, too precious to break and loose. My daughter is now normal!! Just one of the girls, doing well in school, and being loved and noticed by her teachers! Even her talent in art has been noticed, wow. No one in her previous school ever noticed that, because even though it's one of her talents, it's quite average compared to 100 other girls her age. You know what I mean? There's nothing outstanding in Boeboe, except the way she draws little children to her, and the way she has with them. It's an amazing ability. But nothing that will get you noticed between 100 grade sixes!


It's going so well with Boeboe, that the psychiatrist has even halved her medication. And with it, her aggression got less. So somehow, the medication must've worsened it. Probably when she didn't need the high dosage anymore! Well, that's my theory. Unfortunately, her self-pity got a bit worse, but nothing we can't handle easily. Bottomline, she's happy, she's part of the girls, she's doing well socially, she's definitely showing signs of maturing, academically she did really well (except in history, but we'll work on that). All is good in Boeboe's world. Physically, all is ok for now too. I'll address this in another post at some point.


Monkeyman
The only bad with all the good. Firstly, it's not just bad. He loves the school, he made friends (though more in the bundle so far) and he excels academically. He absolutely excels. One day, I will elaborate on this, but accordingly to the neurologist, we have an extremely intelligent little boy. She repeated it about 3 times, as if she wanted to make sure we really, really get it. He's intelligent. Super intelligent. But, it's something we knew all along, and now see in his work too. We've always noticed it. How could you not? He was our baby boy, we lived with him every day for 7 years. The way he just makes sense of his world. The way he understands concepts immediately, grasping the intricacies as well as the bigger picture. The way he even understand consequences. And especially in the way he wanted to understand and learn. He loves asking questions! Not "why". But "how", "where" and "how much". His current favourite is to work everything back into hours, minutes, months, cents, ml's, mm's or such units. Like working out how many months it has been since Jesus Christ has been born. :-)


He was pushed to the advanced reading group. Since he started to learn to read, it took him 2 months, and he's almost fluent. Amazing. It took Boeboe about 2 years. :-( That saddens me! Monkeyman only got full marks for all his spelling and maths tests (yes, they write tests in grade 1 these days - also another post for another day!). Not even one tiny mistake. Clearly, the level of standard is way below his requirements. But that's ok! I prefer it like that, in the foundation phase.


So what's the bad? Well, we saw the neurologist, as I mentioned. The one that specialises in mitochondrial diseases. The good is, she says he has only 1 marker for mitochondrial, and that's not nearly enough to even suspect it, let alone do a biopsy for it. So yay for that!!! Why am I so sad and worried then? Well, she said she doesn't know what's wrong, and that she believes we can stop looking, since no one knows what it is.


Does that make sense to you? It doesn't to me. He's 7!!! She didn't say nothing is wrong, quite the opposite. She noticed how he was normal-looking at one moment, and while she watched him draw a picture, she saw how the blood drained out of his face for no reason. He stopped drawing, stared off in space and then continued drawing. Being clearly very pale. She believes it's something, but the only thing that fits in her opinion, would be seizures. We need to do an EEG, and I have to admit, I'm dragging my feet. Really dragging.


So she noticed and believes there's something, but if it's not seizures, she wants us to stop looking for answers. I asked her, "and what if it causes something like the pulmonary hypertension again?". And she replied that we need to take him for a checkup with his pead every 6 months. She phoned the pead, and organised this. So in her mind, it's all done and dusted. Do the EEG, check him up, especially his heart, every 6 months. And ignore the fact that a 7-year old little boy can sit quietly at a table and from one second to the next loose all colour in his face. Without saying a word, without moving, without reason. And we're suppose to just ignore it?


I don't get it. He's my little boy. And something is very, very wrong. I know it. I KNOW it. I feel it. I see it. And not just me. His dad too. We discussed it this week again. This holiday... it's worse. Really not going well. He's almost constantly pale. He doesn't do anything, apart from moving from one chair or bed or place where he can sit down. Usually on the iPad or iPod or x-box or such. He doesn't run around. He doesn't jump or anything like that. He has this embarrassed little laugh. Self deprecating. You can SEE something is WRONG. Physically, and also emotionally. So what do we do???? When your last hope, the one doctor all the others referred you to, tells you to "just keep an eye on your son every 6 months at the pead", then what do you do? Where to from here?


The dr also said that since we're not going to do a muscle biopsy, and the vitathion (ATP energy  medication) helped before, we should put him back on it. We did, and I noticed a tiny little bit improvement after 3 weeks. We stopped this holiday (I believe in giving the body breaks from multi-vits, because of overloading the organs. So maybe that's why he's so badly off again? I don't know. We went to a family braai yesterday, and for the FIRST time in almost 2 weeks, he ran!! They played ball, all the little ones. It was wonderful to see. But it took a toll. He was so tired, so badly off, that he cried every 5 minutes. And I really mean, every 5 minutes. Like my SIL said - he was like a toddler who missed his afternoon nap. Some of the other people later came to me, asking me why is Monkeyman crying so much? What was wrong with him? It was clearly very, very, very abnormal for a child his age. What could I say? Oh, nothing...the drs can't find the problem, so we're supposed to just ignore it and hope it goes away. :-(


Peanut
Our bright star. The one that just goes on. The one that brings so much joy. So much laughter. So much happiness to this house. She's loved so very, very much. And she loves so much in return. Every one of us. She's funny! And has self-confidence. And independence. She loves school!!! Absolutely LOVES it. She has a best, best friend. They're inseparable. She refuses to stay at home. Ever. Even when she had a cold, she refused to not go to school, if she sees the older kids goes off. Oh man, she's soooooo different from the other three. My husband regularly comments on how much she's different from the others. You can put all 3 of them in one corner, and she'll be in the opposite corner. All of them in one pen, and she'll be the one on the outside. Emotionally, socially, almost in every way.


She seems to have missed the tantrum stage. Oh, she would throw her toys out of the cot sometimes, but compared to Boeboe, I just cannot call it a tantrum. There's very little screaming, and it lasts minutes. Not hours with voices hoarse from screaming like with Boeboe. She might be independent and strong-willed, but her will and independence aligns with what's expected of her. She rarely swims upstream. She loves doing whatever is expected of her. She loves trying. And she absolutely adores anything musically. Songs, instruments, singing, anything to do with music. They have music class at school, which is of course, one of her favourites. And when they play dress-up or with the old broken computer hardware.


It's such a relief, her being so happy at school. I was so scared, so worried. It helps though, that I don't work all morning. Most days, I fetch her around 9 or 10am. Only 2 days do I need to work until 12. Never later than that, so she really just get to go to school, play a few hours, learn a few things and then mommy fetches her and we either go home, wait for the older children in the car (eating lunch so that she can fall asleep on the way home), or we go to the shops which she likes. No wonder she loves going to school every day! And she knows where I am, never more than about 20m from her. Either in the one class, or in the office or the class next to the office. I once sat in the office with the door open, and she came around the outside where their playground is, with a friend, pointed to me and said: "There's MY mommy." Then she tugged her friend on the hand and ran off, happily playing. She sounded so chuffed. So proud and happy, to have me there. :-) So you can see why I love this job so much!! Who gets to have all 4 her children around her, while doing something she really, really enjoys? And gets paid (albeit not in gold) for it!


And that's all of us! Happy and healthy, with the usual worries and ups and downs. I'm going to try and write up all the posts that's in my head, and not neglect the blog so much this next term.

New beginnings

I don't have a lot of time, so this post will be short and conscise (I bet you never thought I can be quick? Hahahaha).

I got a job!! I'm going to start part-time teaching at the same school my children will be attending. First job in 14 years. First one I applied for. I'm quite proud of myself. Of course, it helps that I have the precise qualifications they were looking for. I'm super, super excited!! I'm gonna teach maths as well as computer science. I'm very busy preparing for next week, and getting everything ready for this new challenge in my life.

This of course means that Peanut will need to start school. Fortunately, they were able to take her in at the same school!! How awesome is that? So me and ALL 4 kids will all be together at the same school. :-) Pretty cool hey? I'm only working 7 hours a week (between 30 min and 2 hours every day), so basically Peanut will just go to school to play a bit with the other kids while I have a class to teach. I'm allowed to come and go as I please, and take her with or leave her whenever needed. So I'll take it day by day, see how she adapts and when she needs to come home with me for a bit inbetween classes. Of course I'm stressed about this part! My baby is starting school.... :-(  But she's turning 3 this year, she's much more social than the other kids were at this age, she's extremely healthy and she LOVES playing with other kids. So I'm sure she'll be fine.

Mr N is starting high school, and very excited about it. Of course, added to the excitement is the fact that one of his new teachers is his mom. ;-) He has no idea what's in stall for him.... hahahahaha. Just kidding, we're going to have a ball! I have so many exciting projects for them, I'm sure they're going to love it.

Boeboe is just as excited, though, she has to wait a year to have me as teacher. :-) She's looking forward to making new friends and being part of a group of kids where she can fit in, and will be accepted for who she is. I'm going to keep a very close eye on her this year, I need her to be okay before she gets to high school. Emotionally, academically, socially and physically.

And last but not least, I think the one most excited among all of us, is Monkeyman!!! He simply can.not.wait. LOL. I'm so grateful that he loves learning like this, and that he's looking forward to the new school and being grade 1 (start of primary school in our country). I'm desperate for him to make a new friend, because he's quite sad about leaving his old friends behind in the previous school. I'm of course also quite worried about how he will cope. I hoped for some improvement over the holidays, but it's not going well. He's almost constantly pale, complaining about being tired, legs feeling like lead and refusing to play with his siblings because of tiredness. Ai man.


Some pics of Boeboe, with her new, gorgeous haircut!! Isn't she looking fabulous?

 

 

Goodbye 2014, Hello 2015

Can you believe it. 2014... gone. Finish and dusted. What a year it was! When 2011 were done with, we just prayed to never, ever have another 2010 and 2011. Unfortunately, 2013 and 2014 very closely matched the difficulties for us. So here's to hoping that 2015 will thus match the quiet love, happiness and wonder that was 2012. The year that brought our last baby and a whole lot of healing to us.

Long ago, I wrote a post in the old year about every child (here). I'd like to recreate that here now. They have all grown so much, turned into such beautiful young people. I'm so very, very proud of all of them.

Mr N
He has matured so much, even though he hasn't changed much. He's still scrawny, still all smiles, few hugs and a very sensitive side he likes to hide. He's very secure in who he is, where he's going and what he'll do with his life. Career-wise, but also all other areas. It's as if he was born being 30, and he's just waiting the time out to be 30. If that makes sense.

He's such a caring young man. He will make sure all and everyone around him is happy, taken care of and not slighted or unhappy in some way. He will look out for his younger siblings, as long as I'm not looking. ;-) He adores his babysister, and loves to chase her around the house, driving her to hysterical giggles.

Academically, he's worked really hard this year. He has learned some lessons. That you have to make sure you keep all balls in the air, because if you drop one... It was a valuable lesson. I'm so proud of the way he has handled such a difficult year. The way he coped, and took it one day at a time and just made sure he kept his head down and did what needed to be done. He was never involved in any of the upsets at school. Never part of the rowdy 13-year old boys who think they're too big for their shoes because they're the eldest in school. He was never involved in any of the scandalous behaviours, never wanted to be part of those groups. He stood by his morals, his integrity and his honesty. He still respected his teachers! And he showed us that he can be trusted. That was the biggest gift he could have given us. We love this firstborn of ours to pieces!

Boeboe
Oh man, our little fighter. Who knew that when she was lying in that tiny crib, struggling for every breath to just stay alive, that that fighting spirit would take her so far! That she would need it again, and again, and again. Of course it saddens me so much, but when I see her fight through every obstacle life throws at her, I can't help but be so amazed, so proud of this delicate little thing that houses such a big spirit. She has no idea how proud she makes us. How much we respect her abilities to overcome life and stay afloat. If only I had half her spirit!!

And then she stays humble, loving and gentle. How does she do it? There's no one kinder, no more tender person in this life. She will cut her own arm off, if someone smaller and weaker than she needs it. The way she loves her siblings, and especially dotes on her babysister. It's heartwarming to see.

But. She's not a kitten to touch without gloves!! She scratches and bites and will take your hand off if you're not careful! She applies that fighting spirit to everything around her! When she feels threatened, slighted or misunderstood, EVERYONE arounds her knows it IMMEDIATELY. She will NOT keep quiet. Never! Even when asked to tone down, she.will.not.

This year, academically, she has surprised us beyond words. She has excelled!! We're so so so proud of her hard work, her dedication, her tenacious spirit that just keeps going. Until the work is done/learned/completed/perfected. She will NOT give up. Whether it's fighting the demons in her head, the homework or the bladder problems she lives with every day.

I have to add one last thing. This little girl of mine is turning into an exceptionally beautiful young woman. She has this slender, gracious long limbs and body that she moves in such fluid motion that it captivates anyone looking at her. Her long, thing fingers, her hooded dark eyes, her long shiny black, black hair, her looooong lashes, the perfect olive coloured skin....one day, she's going to break alot of hearts, and I'm just praying that she'll stand strong and make the right choices in life regarding men.

Monkeyman
Ag man, my little monkey. He's such a joy to have around. Such a sweet, sweet personality. So soft and gentle and kind. So tender and quiet and contend. Four year laters, he's still just my quiet, deep river that just flows calmly and strongly. Never any upsets. Never demanding. Never making the world known that here he is. He just is. Quiet, on his own, shy smile ready for any loved one.

He's our clever little one. The one who, likes his older brother, finds academics easy. He loves learning! Loves, loves, loves it. He's looking forward to learning to read and write some more this year so much. He adores learning new facts of the world around him, and will remember it so well. Explaining days later to me what his teacher said! He always asks how something works. He loves maths! He finds it easy, and get so excited when he comes across a difficult calculation and can work it out all by himself.

He adores his siblings, especially the older two. They're his world! He looks up to them, and hate not being able to do all that they can. He absolutely loves it when they spend time with him. Outside ball games with Mr N, or arty, crafty or pretend play inside with Boeboe.

He's a scaredy little cat though, this one. He wakes up when there's thunder and lighting at night, and the lighting storms here in the highvelds are particularly spectacular in sound and light. It scares adults as much as the children! We just hide it a bit better. :-)

What I find interesting, is to see how much he has matured this past year. Alot of his peers are still in the "I am better/faster/quicker/etc. than you" phase, while he has moved out of it. He will come and tell me after an event or a visit or a school day, how he wasn't the fastest, best nor the strongest, but that it's okay, he didn't mind and still enjoyed the game. Such maturity from such a young little boy. It makes my heart swell in wonder and pride. Just a year ago he still thought he was SUPERfast and will always win all running contests. Now, he doesn't mind loosing, and will participate with a happy smile, because it's still FUN! How can you not love such a spirit? :-)

Peanut
My baby. My last beautiful baby. The little girl I so desperately wanted. Was she worth the fight? Yes! Very, very, very much so. The nine months of nausea. The worries. The little sleep I still get. Worth every minute. Because she's the most adorable part of our family. She's an absolute wonder to have with us. Very, very much loved, and very much wanted!

She's her own little thing. So different from the rest. The way she uses her short little body, her abandonment when she has fun. The way she would sing for everyone and anyone without shyness. The way she would laugh with her siblings. Such happiness.

She's still a shy, introvert, even though she has her moments. She has this way of trying to hide her face when she hears someone talks about her. It's the cutest thing ever! She loves to get photographed! And she loves watching movies of her and her siblings on my iPad.

She doesn't sleep much. Even though she's only 2.5, she doesn't take a nap every day. She sleeps INTERUPTED for 11 hours a night, and about 3-4x a week she'll take a 2-hour nap. When SHE chooses to. It could be 2pm, or even at 6pm! You canNOT make her sleep when she's not ready, but you can keep her awake when you need to! She's not very active though. She's a little dreamer, that will easily sit and play with a bunch of toys all quiet and sweet for a long while. Her all time favourite though is the big blue bike outside! She'll ride and ride and ride that thing for hours!

She hates bathing! Hates hates hates it. She's terrified of it! She loves swimming, so it's not the water. Something about bathing freakes her out. And washing her hair is almost a no-go. But give her a bowl of water to play with, and she's in 7th heaven!

She adores the piano. And she adores music. She will quickly learn the tune of new songs, even though her pronounciation of the words might not be all there. She can't recognise colours, but gives her a shape-sorter and she'll do it perfectly!


So that's my four babies. It has been a long road for them, the past year. It wasn't easy on them. Some days were really, really tough. Some days were really sad. But all four of them would just stand up, dust themselves off and soldier on. Handing out hugs to those around them that has fallen as well. They surely are 4 lovely children to have and to love. I'm such a proud mother, and so grateful to be their mommy. Nothing could've made me happier or prouder, than seeing them develop and grow this past year into the children they are today. I hope to see them even more happy and more secure during a wonderful 2015 that will bring them just love, happiness, laughter and grace.