I can't believe it's almost Christmas!! Where has the year gone by?
Our holiday has been everything but relaxing and quiet! I was looking forward to the rest so much, but alas. We fitted a few visits in with friends, which was very nice, but took up a day every time. So about a whole week went past that way. We also had numerous doctor tests and check-ups. Then we had a few quiet days before we took the kids to their grandparents for 4 days. And every day for the first 3 of that, I spent in the shops trying to find the right gifts for each child. Gosh, it was busy! Poor Peanut got so tired of hanging out in the shops. And when at home, she missed her siblings, so it wasn't the best of weeks for her. Or us!
We've never been the parents that wishes for a break from our kids. We get it, that others do, but personally, being separated from them, isn't how we prefer spending our time. Not even a day. We give every child (except those under age 3) the choice if they want to go or not, and how long they want to go. They have to come to an agreement on the how long though. All 3 the eldest ones choose to go every time, because they have an exceptional relationship with their grandparents. They absolutely love going. They get spoilt, played with, get given all their favourite meals, there's a swimming pool, etc. What's not to love?
I was, like always, a little bit worried about Monkeyman. Not only is he only 6, but he is still quite attached to us. So he does cry for us at times, and that makes me sad. But he wants to be there, and I believe it's good for him at this age. To learn that he CAN cope without us. I was also worried with his tiredness issue. Seems like he was okay though. He's just extremely pale, and definately more tired than when I sent him there. So he didn't get enough rest. Probably because they swam so much, played so much, and had so much fun. He got a nice tan all over his little body, which is why I noticed his pale little face immediately. It was in stark contrast to the rest of his neck and chest. It got even worse after they had another, last swim for the day, but much better again by this evening when they've relaxed in front of the tv for an hour once we were back at home.
Poor Boeboe is also not doing so well. She's very withdrawn the past few months. I need to connect with her again to hear what's up. Her medication isn't working completely, so I need to keep tabs on that as well this holiday. I feel so sorry for her. It was bad enough going through this loss of bladder function when she was age 6 and 7. Now, at age 11, it is much, much worse. :-(
Apart from these issues, it's going well with all of us. :-) We're happy, together, mostly healthy and looking forward to an enjoyable and beautiful Christmas with both sides of the extended families. Can't wait!!
Sunday, December 21, 2014
Sunday, December 14, 2014
Good news!!
So why do I feel so flat? So sad?
It's been a very tiring week. I took Monkeyman to the hospital for his blood test, just to hear that they need special tubes for it, which needed to be ordered first. So next day, we had to go all the way back. He was amazing, like always! No tears, no fears, no tantrums or backtracking. Just being brave. He climbed onto the bed, stuck out his arm and didn't even said "ouch". And it was quite a bit of blood.
Three weeks ago when the cardiologist told me that we needed to take Monkeyman for this bloodtest, she told me "if it's negative, we'll go forward with the muscle biopsy in any case". She actually repeated it twice, as if to make sure I know where we stood.
Guess what? The blood tests came back today, she phoned me with the results. It was negative!! I wanted to scream yay after our conversation ended!!! But I just felt flat. Flat, and sad, and frustrated, and so very, very, very angry.
Because I asked her, "so are we going to do the muscle biopsy next?" Guess what her reply was... "No, it's not indicated. Mitochondrial disease is not indicated."
Oh. OK.
So what now? Well, on Thursday, when I picked up the blood test form at her office and she asked me how it's going, I told her it's really not going well. That he is extremely tired and that I didn't realise that the vitathion had such a huge impact on him. So after saying today that we don't need to do the muscle biopsy, she told me that we should put him back on the vitathion, the Q10 and the carnitine. "Because if it helps him so much, why not?".
Uhm. OK. So if my son have a constant high fever, let's give him paracetamol "Because it helps him so much!".
What about looking for the CAUSE first, or at least while treating the symptoms???
Argh man, I'm so angry. So so angry. How can there be no one that follows through for us? Every bloody darn time we find a doctor that promises us the world, but when it comes to it, they just drop us. Why why why? This isn't the first time this doctor (a cardiologist) has let me down. It's also not the first time that she said that if xyz, then we do abc. And then when xyz happens, she backtracks and says "abc isn't indicated/necessary". Like when she said if his bloodtests showed low lymphocytes for a third time, we should go to his pead. And when it did, and I asked: "so should we go to the pead now", she replied angrily: "I AM a peadiatrician myself!". And like when there was something up with my son's lungs. She noticed it on the x-rays, but instead of following through, she just kept on repeating the x-rays ("because it's cheap and non-invasive") THREE times! Every time getting the same result. It took a pulmonologist to immediately realise that he's inhaling his stomach acid, causing reactive airway disease in especially the right lung. Even the 2nd cardiologist we saw, looked for 2 seconds at the x-rays and claimed: "There's nothing wrong with his lungs!". The pulmonologist heard the cracles through her stetoscope, saw it on the x-ray and picked it up from the lung function test. The numbers were clear on that.
So what to do? This cardiologist has now at least 3x backtracked and not followed through on her own plan of action. My husband says we should phone her again on Monday, and tell her that we're not satisfied being left in the lurch. That it's clear there's something very wrong with our son, and that we know from reading up on it, that the blood test is NOT a particularly good indicator of mitochondrial involvement or not. That a positive can be taken as a positive sign that something is up (several causes for it though) and a negative is indicative of nothing. It does not exclude mitochondrial at all.
But I feel like we're done with this doctor. I'm done with someone that backtracks every time, and never follows through. I can't do this anymore. So I want to go to his peadiatrician, and beg her to please run with this. And not leave us hanging. To please please please help. Because our son is suffering and we're worried and stressed and feeling sooooo alone.
When I look at my son, I can just cry. The difference between what he was on the vitathion, and what we have now is so clear. So obvious. If there was ever even a thread of doubt left that there's really something wrong with him, it's gone. I know there's something wrong. And I want them to find it and fix it. He's suffering, and how is it okay to leave a 6-year old suffering??? How can this whole damn situation even happen??? How how how? You see your child is ill. You take him to the doctor. He gets diagnosed. He gets treated. That's how it works, not true??? How can they just leave him be like this? How can this cardiologist think it's ok to just treat the symptoms with a cocktail of vitamins, without continueing to look for the cause?
The past month, he has been constantly tired, he had fever 4 times, he threw up one day, he has tummy aches constantly (daily) that drives him to tears, he had chestpain so badly for about 3 days that he couldn't get up on the barstool one morning or done much more than just sit or lie down. His legs and feet sometimes pain so badly, that he's crippled for a few minutes. He's anxious, unhappy, and sad. He's in pain, he can't do what he wants to because he's too tired. When he (or me) pushes himself to do something, he turns pale. His eyelids constantly hangs at halfmass. He has circles under his eyes. Even other people has now noticed that it's going badly. And this all after being on holiday for almost 3 weeks!!
Argh!!! But no, let's just throw vitathion at him, "because it helps him so much"!!
Should we do it? Give him the vitathion to at least give him some relief? Because seeing him suffer like this, it's eating away at us. It kills us. But what if next year, the next doctor says "oh, he needs a muscle biopsy", and then he has to be off it for 3 months again to do it?! What then... do we put him through this torture AGAIN, all the while when he's starting grade 1? How can that be fair to a little boy?? He's already suffered 1 of the necessary 3 months without the meds. Shouldn't we stuck it out, just in case they still want to do the muscle biopsy?
Man, I can just cry and cry and cry. We started this road so long ago, our goal was to fix it before grade R. Then, we made it our goal to fix it before grade 1. That's next month!! I can't do this anymore. I really can't. I don't cry easily, but today, I just cried. I wanted to be happy because the blood test was negative. But instead, I just cried.
On a more positive note. The kids passed!!! Their hard work paid off. They did really well, and we're super proud of them. Monkeyman too. He did exceptionally well, he's such a bright little boy. So we're all moving over to the new school, and they're starting grade 8, 6 and 1 there mid-January. Now... we're going to relax, enjoy the holidays and try to get rid of all this stress we were all living under. Upwards and onwards!!
It's been a very tiring week. I took Monkeyman to the hospital for his blood test, just to hear that they need special tubes for it, which needed to be ordered first. So next day, we had to go all the way back. He was amazing, like always! No tears, no fears, no tantrums or backtracking. Just being brave. He climbed onto the bed, stuck out his arm and didn't even said "ouch". And it was quite a bit of blood.
Three weeks ago when the cardiologist told me that we needed to take Monkeyman for this bloodtest, she told me "if it's negative, we'll go forward with the muscle biopsy in any case". She actually repeated it twice, as if to make sure I know where we stood.
Guess what? The blood tests came back today, she phoned me with the results. It was negative!! I wanted to scream yay after our conversation ended!!! But I just felt flat. Flat, and sad, and frustrated, and so very, very, very angry.
Because I asked her, "so are we going to do the muscle biopsy next?" Guess what her reply was... "No, it's not indicated. Mitochondrial disease is not indicated."
Oh. OK.
So what now? Well, on Thursday, when I picked up the blood test form at her office and she asked me how it's going, I told her it's really not going well. That he is extremely tired and that I didn't realise that the vitathion had such a huge impact on him. So after saying today that we don't need to do the muscle biopsy, she told me that we should put him back on the vitathion, the Q10 and the carnitine. "Because if it helps him so much, why not?".
Uhm. OK. So if my son have a constant high fever, let's give him paracetamol "Because it helps him so much!".
What about looking for the CAUSE first, or at least while treating the symptoms???
Argh man, I'm so angry. So so angry. How can there be no one that follows through for us? Every bloody darn time we find a doctor that promises us the world, but when it comes to it, they just drop us. Why why why? This isn't the first time this doctor (a cardiologist) has let me down. It's also not the first time that she said that if xyz, then we do abc. And then when xyz happens, she backtracks and says "abc isn't indicated/necessary". Like when she said if his bloodtests showed low lymphocytes for a third time, we should go to his pead. And when it did, and I asked: "so should we go to the pead now", she replied angrily: "I AM a peadiatrician myself!". And like when there was something up with my son's lungs. She noticed it on the x-rays, but instead of following through, she just kept on repeating the x-rays ("because it's cheap and non-invasive") THREE times! Every time getting the same result. It took a pulmonologist to immediately realise that he's inhaling his stomach acid, causing reactive airway disease in especially the right lung. Even the 2nd cardiologist we saw, looked for 2 seconds at the x-rays and claimed: "There's nothing wrong with his lungs!". The pulmonologist heard the cracles through her stetoscope, saw it on the x-ray and picked it up from the lung function test. The numbers were clear on that.
So what to do? This cardiologist has now at least 3x backtracked and not followed through on her own plan of action. My husband says we should phone her again on Monday, and tell her that we're not satisfied being left in the lurch. That it's clear there's something very wrong with our son, and that we know from reading up on it, that the blood test is NOT a particularly good indicator of mitochondrial involvement or not. That a positive can be taken as a positive sign that something is up (several causes for it though) and a negative is indicative of nothing. It does not exclude mitochondrial at all.
But I feel like we're done with this doctor. I'm done with someone that backtracks every time, and never follows through. I can't do this anymore. So I want to go to his peadiatrician, and beg her to please run with this. And not leave us hanging. To please please please help. Because our son is suffering and we're worried and stressed and feeling sooooo alone.
When I look at my son, I can just cry. The difference between what he was on the vitathion, and what we have now is so clear. So obvious. If there was ever even a thread of doubt left that there's really something wrong with him, it's gone. I know there's something wrong. And I want them to find it and fix it. He's suffering, and how is it okay to leave a 6-year old suffering??? How can this whole damn situation even happen??? How how how? You see your child is ill. You take him to the doctor. He gets diagnosed. He gets treated. That's how it works, not true??? How can they just leave him be like this? How can this cardiologist think it's ok to just treat the symptoms with a cocktail of vitamins, without continueing to look for the cause?
The past month, he has been constantly tired, he had fever 4 times, he threw up one day, he has tummy aches constantly (daily) that drives him to tears, he had chestpain so badly for about 3 days that he couldn't get up on the barstool one morning or done much more than just sit or lie down. His legs and feet sometimes pain so badly, that he's crippled for a few minutes. He's anxious, unhappy, and sad. He's in pain, he can't do what he wants to because he's too tired. When he (or me) pushes himself to do something, he turns pale. His eyelids constantly hangs at halfmass. He has circles under his eyes. Even other people has now noticed that it's going badly. And this all after being on holiday for almost 3 weeks!!
Argh!!! But no, let's just throw vitathion at him, "because it helps him so much"!!
Should we do it? Give him the vitathion to at least give him some relief? Because seeing him suffer like this, it's eating away at us. It kills us. But what if next year, the next doctor says "oh, he needs a muscle biopsy", and then he has to be off it for 3 months again to do it?! What then... do we put him through this torture AGAIN, all the while when he's starting grade 1? How can that be fair to a little boy?? He's already suffered 1 of the necessary 3 months without the meds. Shouldn't we stuck it out, just in case they still want to do the muscle biopsy?
Man, I can just cry and cry and cry. We started this road so long ago, our goal was to fix it before grade R. Then, we made it our goal to fix it before grade 1. That's next month!! I can't do this anymore. I really can't. I don't cry easily, but today, I just cried. I wanted to be happy because the blood test was negative. But instead, I just cried.
On a more positive note. The kids passed!!! Their hard work paid off. They did really well, and we're super proud of them. Monkeyman too. He did exceptionally well, he's such a bright little boy. So we're all moving over to the new school, and they're starting grade 8, 6 and 1 there mid-January. Now... we're going to relax, enjoy the holidays and try to get rid of all this stress we were all living under. Upwards and onwards!!
Wednesday, December 3, 2014
So tired, but good news!!
We spent the whole day at hospital. Not my kind of fun day! :-( We waited an hour for the dr, only to be told we need to get an MRI of a full back spine for Boeboe. Once there, they sent us away until 3pm. That gave us 1.5 hours of waiting. I first had to drop my husband off at work, which left me with very little time to go home and back again. So we stayed at his work, eating a toasted sandwich and whiling away half an hour, while he worked.
The MRI took just under an hour, and I was unable to go in with Boeboe, as I had to stay outside with Peanut. But she was a trooper! She found it boring, and was quite dizzy when she got out, but she did fine!! Afterwards, we waited for almost an hour for the report, just to be told we need to go back for another MRI. :-( They wanted to get the upper back in another view. Urgh. That was awful. But, again, she was an absolute star!
After the 2nd MRI, which took another 20 min, we had to wait AGAIN for the report. By this time, it was 17:30 and we had been there for almost 6 hours. With a busy 2-year old in tow! Gosh, what a difficult, tiring, awful day. Once we had the results, we were supposed to go back to the doctor, but he was already gone by then. :-( So we don't really know for sure, but what we read from the report, she's just fine!!!! Yay!!!!! I'm so so so relieved. I just simply can't imagine going through the whole detethering again. On the other hand, I'm a bit stumped, because that means she's loosing function for no reason?! I just hope she gains it back like the urologist seems to think. :-(
In any case, for now, I'm just deadtired and want to revel in the fact that there's no sign of retethering. Yay! Yay! Yay!
:-)
The MRI took just under an hour, and I was unable to go in with Boeboe, as I had to stay outside with Peanut. But she was a trooper! She found it boring, and was quite dizzy when she got out, but she did fine!! Afterwards, we waited for almost an hour for the report, just to be told we need to go back for another MRI. :-( They wanted to get the upper back in another view. Urgh. That was awful. But, again, she was an absolute star!
After the 2nd MRI, which took another 20 min, we had to wait AGAIN for the report. By this time, it was 17:30 and we had been there for almost 6 hours. With a busy 2-year old in tow! Gosh, what a difficult, tiring, awful day. Once we had the results, we were supposed to go back to the doctor, but he was already gone by then. :-( So we don't really know for sure, but what we read from the report, she's just fine!!!! Yay!!!!! I'm so so so relieved. I just simply can't imagine going through the whole detethering again. On the other hand, I'm a bit stumped, because that means she's loosing function for no reason?! I just hope she gains it back like the urologist seems to think. :-(
In any case, for now, I'm just deadtired and want to revel in the fact that there's no sign of retethering. Yay! Yay! Yay!
:-)
Sunday, November 30, 2014
Really not going well. :-(
It's now been almost 10 days since we took Monkeyman off all his meds, including the vitathion with the ATP that we have been giving him for about 8 months (I think). ATP is the energy your mitochondria manufactures. Which is one of the reasons why they believe he may have a mitochondrial disease. We usually only gave him half a sachet every week day, so that he could cope with his long school hours. Of course we knew it was working, or we wouldn't have given it to him for months and months. But we never realised how exceptionally good it was working. Until we had to take him off completely. :-(
The first few days, last weekend, were normal. Monday and Tuesday he still went to school, since his siblings were writing exams and had to be at school. I noticed that Monkeyman was more irritated, teary and less energetic. He had a few meltdowns in the shop, which was very unlike him. But overall, it was still "ok". On Wednesday he stayed home with his siblings, and we visited his old play school for an hour or so. When we got home, it was clear. He was soooo tired, that everything just got to him. He cried at the drop of a hat. I even asked him in exasperation - why are you crying about everything? He shrugged. He was pale, the little blue vein on his chin was dark, his heart beat so hard that it felt like it's jumping out of his chest, his face was withdrawn, his eyes half hooded, his shoulders hunched, and he lost his sparkle.
On Thursday we went to a family restaurant for breakfast with friends, and all 3 his siblings were with him. Something that he usually cherishes. Ag man, I can just cry. He played with them in the play area for about 20min of the 2+ hours we were there. Then he lied down. On the floor, on the cushions they have in the playroom, and in the end, on the couch of the table behind me. He was crying, because he was sooooo tired, but couldn't sleep because of the noise. So he just laid there for almost 2 hours. Barely moving, but awake. Completely miserable. (Yes, afterwards I realised that I should've cut the outing short, but I also have 3 other kids to consider. It's almost a tradition now, and one they're really looking forward to every term. Going to Spur after exams are done.)
Later that day, Monkeyman told me: "Mommy, do you know why I think I'm crying so much? It's because I'm just so tired all the time and wants to sleep, but I can't."
How can this be normal? How can this be fair? Have my boy worsened while the vitathion masked it? Or was it always like this and we never noticed it getting/being this bad? Did the full-time school this year caught up with him, as I was afraid it would? Last year, I kept him at home 2 days of the week, apart from the weekends, and on days he was tired or seemed to crash. The teacher also told me when he had a bad day, then I would keep him home the next day. This year, there was none of that. Just a tired little boy that had to keep going like the energiser bunny, day after day, month after month. Because it's formal schooling.
I'm angry. I'm so very very angry.
I so wanted him to prove to us that it's NOT mitochondrial. I wanted him to be FINE this December. While on holiday. I wanted him to defy the odds and the tests and the doctors and their predictions and assumtions and diagnoses. I wanted him to be OK.
He's not.
And that breaks my heart. I'm not sure if I can handle this. To see your little boy lie down on a couch in a restaurant which he LOVES, it does something to a mother's heart. And it worries me. So much. All these years, he only needed a short rest when he got tired. He would lie or sit down for 10 or 30 minutes, and be fine! He would go and play again. Not this time. :-( This time, he didn't get up again. He found no joy in the restaurant. No joy in being with his (laughing, playing) siblings. No joy in being out, being treated with good food and company. He was miserable. Miserable from tiredness. How awful, for a little 6-year old boy to feel like that. Especially when this was one of his most treasured outtings in the past.
If I ever doubted this whole process, I now know we're doing the right thing. I'm just not sure if I'm strong enough to face the answers we might get. Especially if he is now worse off than what he was 1 year ago. Does that mean it's gonna be true? He's going to have a mitochondrial disease that's progressive, uncurable, and usually ends in an early death? I can't face that. But seeing him like this.... I can't stop the process. He needs help. Help I can't give him.
Today, he has a fever. :-( Sick again. I wanted to send him to school tomorrow, since Boeboe has to go, and he misses his friends. He hasn't been to school since Tuesday. But now he's ill. Again. Ai man, how is this ok???
We had Boeboe's checkup with her urologist last week. He says she's going through a bad cycle. Not necessarily because the cord is retethered. Bladders aren't static, and goes through good and bad cycles all the time. She's in a particularly bad one. Her bladder wand is all thick again. :-( It breaks my heart, seeing her go through all of this again. Knowing that for a bladder wall to thicken, she must be going through horrendous and painful bladder contractions again. I can just scream. Scream at the powers that has done this to my baby. The powers that has allowed this. My husband told me, it feels like we've been cheated. Cheated out of a daughter who can just be a normal, happy, healthy child, and not having to deal with this. We just want her to be happy! To not having to worry about taking an extra set of clothes wherever she goes. About whether there's a bathroom closeby, or if someone's going to notice her trying to control the bladder contractions. Dehydrating herself in the hopes that she won't need a bathroom.
The dr has changed her medication, to something that will hopefully work better and longer, as well as give the bladder a better chance at healing again. After 3 months, we'll see how it goes. If necessary, we'll then book another botox session. Next week, we're having the appointment with the neurosurgeon to rule out a retethering. Accordingly to the urologist, the fact that only the bladder function has declined, is a positive sign that it might not be a retether. I'm going to hold onto that.
Another thing that feels like it just tipped my balancing act, was Friday night. We were having a good evening, with family and pizza, when Boeboe screamed in terror and pain. She pressed on the couch, and something stung her hand. Her body immediately reacted. Her palm turned dark red, blotches, swollen and really painful. There was a clear little bloodied hole in the middle of a perfectly round white circle. It looked exactly like the mark she got when a wasp stung her years ago. Except, this time, she was reacting really badly to it. I gave her a desselex (antihystamine), tried some ointments and treatments (like a cortisone cream), and kept a close eye on her. After 20 minutes, she had a red line rapidly moving upwards from her handpalm past her elbow onto the upper arm. So I took her to the all-night clinic close by, where the dr confirmed that she was having a severe allergic reaction to what he also believed, must've been a wasp. He couldn't be 100% certain, but that was his best and first guest. (We never caught or saw what it was, despite a fruitless search for it.) He gave her high doses of steroids, and it worked extremely fast. A few hours later the red line was gone, the swelling going down, the pain gone and the red colour fading a little. It's now 2 days later and it's still very noticeable, but contained to her handpalm. She's still on high doses of steroids, but we're weaning off it now. Ag man, just what I needed. To add wasps to her always changing list of allergies. :-( On the way back home in the car, she told me: "Mommy, Monkeyman is really fortunate. That he's not allergic to anything." She sounded so sad.
Let's try and end on a happier note. Mr N got an award for maths last week! I'm so proud of him. Afterwards, we all sat around the kitchen table, and ate ice creams. To celebrate. It was so good. One moment of bliss and beautiful memories with 4 laughing, happy little faces, in between the miserableness and stress around us.
The first few days, last weekend, were normal. Monday and Tuesday he still went to school, since his siblings were writing exams and had to be at school. I noticed that Monkeyman was more irritated, teary and less energetic. He had a few meltdowns in the shop, which was very unlike him. But overall, it was still "ok". On Wednesday he stayed home with his siblings, and we visited his old play school for an hour or so. When we got home, it was clear. He was soooo tired, that everything just got to him. He cried at the drop of a hat. I even asked him in exasperation - why are you crying about everything? He shrugged. He was pale, the little blue vein on his chin was dark, his heart beat so hard that it felt like it's jumping out of his chest, his face was withdrawn, his eyes half hooded, his shoulders hunched, and he lost his sparkle.
On Thursday we went to a family restaurant for breakfast with friends, and all 3 his siblings were with him. Something that he usually cherishes. Ag man, I can just cry. He played with them in the play area for about 20min of the 2+ hours we were there. Then he lied down. On the floor, on the cushions they have in the playroom, and in the end, on the couch of the table behind me. He was crying, because he was sooooo tired, but couldn't sleep because of the noise. So he just laid there for almost 2 hours. Barely moving, but awake. Completely miserable. (Yes, afterwards I realised that I should've cut the outing short, but I also have 3 other kids to consider. It's almost a tradition now, and one they're really looking forward to every term. Going to Spur after exams are done.)
Later that day, Monkeyman told me: "Mommy, do you know why I think I'm crying so much? It's because I'm just so tired all the time and wants to sleep, but I can't."
How can this be normal? How can this be fair? Have my boy worsened while the vitathion masked it? Or was it always like this and we never noticed it getting/being this bad? Did the full-time school this year caught up with him, as I was afraid it would? Last year, I kept him at home 2 days of the week, apart from the weekends, and on days he was tired or seemed to crash. The teacher also told me when he had a bad day, then I would keep him home the next day. This year, there was none of that. Just a tired little boy that had to keep going like the energiser bunny, day after day, month after month. Because it's formal schooling.
I'm angry. I'm so very very angry.
I so wanted him to prove to us that it's NOT mitochondrial. I wanted him to be FINE this December. While on holiday. I wanted him to defy the odds and the tests and the doctors and their predictions and assumtions and diagnoses. I wanted him to be OK.
He's not.
And that breaks my heart. I'm not sure if I can handle this. To see your little boy lie down on a couch in a restaurant which he LOVES, it does something to a mother's heart. And it worries me. So much. All these years, he only needed a short rest when he got tired. He would lie or sit down for 10 or 30 minutes, and be fine! He would go and play again. Not this time. :-( This time, he didn't get up again. He found no joy in the restaurant. No joy in being with his (laughing, playing) siblings. No joy in being out, being treated with good food and company. He was miserable. Miserable from tiredness. How awful, for a little 6-year old boy to feel like that. Especially when this was one of his most treasured outtings in the past.
If I ever doubted this whole process, I now know we're doing the right thing. I'm just not sure if I'm strong enough to face the answers we might get. Especially if he is now worse off than what he was 1 year ago. Does that mean it's gonna be true? He's going to have a mitochondrial disease that's progressive, uncurable, and usually ends in an early death? I can't face that. But seeing him like this.... I can't stop the process. He needs help. Help I can't give him.
Today, he has a fever. :-( Sick again. I wanted to send him to school tomorrow, since Boeboe has to go, and he misses his friends. He hasn't been to school since Tuesday. But now he's ill. Again. Ai man, how is this ok???
We had Boeboe's checkup with her urologist last week. He says she's going through a bad cycle. Not necessarily because the cord is retethered. Bladders aren't static, and goes through good and bad cycles all the time. She's in a particularly bad one. Her bladder wand is all thick again. :-( It breaks my heart, seeing her go through all of this again. Knowing that for a bladder wall to thicken, she must be going through horrendous and painful bladder contractions again. I can just scream. Scream at the powers that has done this to my baby. The powers that has allowed this. My husband told me, it feels like we've been cheated. Cheated out of a daughter who can just be a normal, happy, healthy child, and not having to deal with this. We just want her to be happy! To not having to worry about taking an extra set of clothes wherever she goes. About whether there's a bathroom closeby, or if someone's going to notice her trying to control the bladder contractions. Dehydrating herself in the hopes that she won't need a bathroom.
The dr has changed her medication, to something that will hopefully work better and longer, as well as give the bladder a better chance at healing again. After 3 months, we'll see how it goes. If necessary, we'll then book another botox session. Next week, we're having the appointment with the neurosurgeon to rule out a retethering. Accordingly to the urologist, the fact that only the bladder function has declined, is a positive sign that it might not be a retether. I'm going to hold onto that.
Another thing that feels like it just tipped my balancing act, was Friday night. We were having a good evening, with family and pizza, when Boeboe screamed in terror and pain. She pressed on the couch, and something stung her hand. Her body immediately reacted. Her palm turned dark red, blotches, swollen and really painful. There was a clear little bloodied hole in the middle of a perfectly round white circle. It looked exactly like the mark she got when a wasp stung her years ago. Except, this time, she was reacting really badly to it. I gave her a desselex (antihystamine), tried some ointments and treatments (like a cortisone cream), and kept a close eye on her. After 20 minutes, she had a red line rapidly moving upwards from her handpalm past her elbow onto the upper arm. So I took her to the all-night clinic close by, where the dr confirmed that she was having a severe allergic reaction to what he also believed, must've been a wasp. He couldn't be 100% certain, but that was his best and first guest. (We never caught or saw what it was, despite a fruitless search for it.) He gave her high doses of steroids, and it worked extremely fast. A few hours later the red line was gone, the swelling going down, the pain gone and the red colour fading a little. It's now 2 days later and it's still very noticeable, but contained to her handpalm. She's still on high doses of steroids, but we're weaning off it now. Ag man, just what I needed. To add wasps to her always changing list of allergies. :-( On the way back home in the car, she told me: "Mommy, Monkeyman is really fortunate. That he's not allergic to anything." She sounded so sad.
Let's try and end on a happier note. Mr N got an award for maths last week! I'm so proud of him. Afterwards, we all sat around the kitchen table, and ate ice creams. To celebrate. It was so good. One moment of bliss and beautiful memories with 4 laughing, happy little faces, in between the miserableness and stress around us.
Sunday, November 23, 2014
Small Update and POA
Last week, the cardiologist phoned to hear how Monkeyman is doing on the new medications. I told her that the first 2 weeks we saw absolutely no improvement (which is perfectly normal, it apparently takes quite a while). The 3rd week he had a fantastic week. Definitely more energy in the afternoons. He played and yelled and ran around in the house like any normal 6-year old. I had to yell at him at times to stop being so boisterous! What a great feeling. :-) But, it's not that he has never had such weeks. Maybe, it was just a good week after some really bad ones. Who knows?! This 4th week he was less energetic. Much more lethargic. More pale again, cricles appearing again which were gone last week. But, it wasn't a bad week just yet. More just a normal, average week. Ontop of this, since yesterday he has symptoms of a cold. Which could be the reason for the bad week.
So what to say? Does the medication work? I don't know. Yet. So at that moment, the doctor asked what I wanted to do, because it's coming towards the end of the year and things are slowing down to a standstill in our country. You're lucky if you could get anything done in December here!! I had a very normal, though little strange for me, moment where I just couldn't go forth with it. I backtracked. At that moment, I just couldn't face putting Monkeyman through a biopsy, looking for a diagnosis I really, really, do NOT want for him. Who wants their child to have an incurable, progressive illness?? And really... do I think he has a mitochondrial disease? Really, really believe it? No. I'm far from convinced. So I said we needed more time. But after putting the phone down, I realised that waiting would mean that we would only start the process in January, which would mean we'll take him off all of his medications just as he starts grade 1. It seemed a bit stupid. It felt unfair towards Monkeyman. All because of my moment of fear and doubt.
So I phoned the doctor back the next day, and she said she spoke to the mitochondrial specialist about the order things need to happen in. First, there's a blood test they want to do. For this, he have to be off the medications for 2 weeks at least. So we've stopped the meds on Friday, and in little less than 3 weeks from now, we'll test. If it's negative, the cardiologist said we'll go forth with the muscle biopsy. Probably in January then, I guess. If it's positive... well, I didn't ask her that part. Oops. I guess I don't want to entertain that thought just yet.
While I'm updating.... It's going so well with the exams!! I don't have many marks of the kids just yet, but from what they said after each exam, I really believe their hard work (and mine!) has paid off this exam. I taught them a technique which seems to have helped memorising the massive amounts of work they have. Even after summarising, it's still pages and pages and pages of facts and information.
I'm so relieved that it's going so well. We're on the last few days and subjects. Just one more for Boeboe, and 2 more for Mr N. Then they're (hopefully!) done with school for the year!! Done with this school, and done with primary school for Mr N!! Can't believe my baby is now (almost) a highschool teenager. Where has time gone by?
So what to say? Does the medication work? I don't know. Yet. So at that moment, the doctor asked what I wanted to do, because it's coming towards the end of the year and things are slowing down to a standstill in our country. You're lucky if you could get anything done in December here!! I had a very normal, though little strange for me, moment where I just couldn't go forth with it. I backtracked. At that moment, I just couldn't face putting Monkeyman through a biopsy, looking for a diagnosis I really, really, do NOT want for him. Who wants their child to have an incurable, progressive illness?? And really... do I think he has a mitochondrial disease? Really, really believe it? No. I'm far from convinced. So I said we needed more time. But after putting the phone down, I realised that waiting would mean that we would only start the process in January, which would mean we'll take him off all of his medications just as he starts grade 1. It seemed a bit stupid. It felt unfair towards Monkeyman. All because of my moment of fear and doubt.
So I phoned the doctor back the next day, and she said she spoke to the mitochondrial specialist about the order things need to happen in. First, there's a blood test they want to do. For this, he have to be off the medications for 2 weeks at least. So we've stopped the meds on Friday, and in little less than 3 weeks from now, we'll test. If it's negative, the cardiologist said we'll go forth with the muscle biopsy. Probably in January then, I guess. If it's positive... well, I didn't ask her that part. Oops. I guess I don't want to entertain that thought just yet.
While I'm updating.... It's going so well with the exams!! I don't have many marks of the kids just yet, but from what they said after each exam, I really believe their hard work (and mine!) has paid off this exam. I taught them a technique which seems to have helped memorising the massive amounts of work they have. Even after summarising, it's still pages and pages and pages of facts and information.
I'm so relieved that it's going so well. We're on the last few days and subjects. Just one more for Boeboe, and 2 more for Mr N. Then they're (hopefully!) done with school for the year!! Done with this school, and done with primary school for Mr N!! Can't believe my baby is now (almost) a highschool teenager. Where has time gone by?
Monday, November 3, 2014
An update on Monkeyman
Ah, the joys of examtime. No time for myself (or this blog!). Yes, we started with revision for the last exam of the year (our schooling year is from January till November). Interestingly enough, I heard the past year about so many countries which either postpone exams until the child is 12 or even older, or who only have 1, or maybe 2 exams a year. We're "supposedly" only doing 2 exams a year, and the other 2 of our 4 terms we do what they call a "test series". But, the tests in the test series is schedule exactly like an exam, the work is about the same amount of work, the stress and pressure is the same, you still get a report card with the marks on it for passing or failing, so ya, what's the difference between a test series and an exam? Nothing! So, we write 4 exams a year, from the year a child turns 10. Every exam is about 2-3 weeks long, and most kids starts to study 1-2 weeks before. So, children studies for between 3-5 weeks, 4x a year, in our country. Pretty hectic!! Don't even ask me what I think the use of this is... I'm hoping for some differences or improvements next year in the private school. But we'll see.
This year, exams has been crazy in our house. I summarise both the 11-year old and the 13-year old's work for them. You can shake your head in appallment, disgust, dissaproval, surprise, or whatever emotion. It does not change the fact that it's the ONLY way my children can currently pass. So my choice is... summarise for them and see them study their butts off and pass? Or, see them study their butts off with their own summaries/no summaries, and see them fail. What would you have done? I'm a SAHM, I have the time, sort of, so I summarize. Because currently, that's what they need. It won't be the status quo for end of time. But for now, this is what we do, because this is what my children needs. But it takes ALOT of hours. Alot. Thus, this blog is last in line. I did, however, took a bit of time today for myself, and I know a number of you are curious how the cardiologist's visit went last week. So here's the update on that.
Overall, it's been a REALLY good visit. Walking out of there, I was sooooo happy that we took him back. Really happy. It didn't start out that way, but fortunately it ended good. You know what I find interesting/puzzling/frustrating? The assumption that almost all the doctors makes within the first 3 minutes of us being in their offices with Monkeyman. I always have to stop explaining why we're there, to let them finish with the proposed solution to their assumptions, and then I explain that no, in Monkeyman's case, this is not a new symptom (so it can't be cancer/depression/low iron/sleep apnea/too little sleep/bad diet/too many late nights/just a phase/psychological/personality/etc. etc. etc). It didn't begin when he started school 10 months ago, or because of summer allergies or because something huge changed in his life like the birth of a baby. We didn't just noticed it the past 6 months or 12 months or even 2 years. It's been there all of his life. From when he was a tiny baby of 4 or 5 months when I noticed it for the first time (and started asking doctors for help), until today, at 6-year old. All of his life. Fortunately, after I explain this (for the millionth time), the doctors usually stop and listen more attentively and redirect their thoughts.
I've wondered why is it so difficult to get that though? Why do I have to explain, and explain again and again to the same doctors that this is not new? I theorise it's because it's extremely rare to deal with a child that has been tired all of his life (adults complaining of tiredness for 6 years, yes, but children?). A physical, draining tiredness that you can see the effects of, on his face and in his body and attitude. Even if there was/would/have been a child that the doctor knows of (that could provide a frame of reference for him/her), the doctor would assume that after 6 years, we would have had the answers already. Or thrown our toys out of the cot or something, because we demand answers.What parents would let this be for 6 years?? So it's impossible for them to wrap their mind around seeing a healthy, normal child (without structural heart or other abnormalities) that presents with tiredness for 6 years as the oldest and mostly only symptom. So they skip over that bit of information the mom gives them, and assume the tiredness must be a new symptom. Until I correct them. And then you can see they hear me. Even though they can't, for themselves, always see it during that 30-minute appointment. Not even all my family can. Most people have to go on my and Monkeyman's dad's word that this is there. That it's real. Just like I can hide almost all my medical problems, Monkeyman can too. And does. And nobody would be none-the wiser, until I either point out the little details, or if they're really astute, they'd notice them and ask me about it. Like my sister, and her husband. They've noticed it over the years, and asked us about it. For example the circles under his eyes, and sometimes being or turning pale.
Sorry, now I'm rambling again. Let's continue with the appointment.
The cardiologist did a thorough exam again, including an EKG and heart sonar. She said his heart function looks good, but his heart wall is still too thin at 2 places. Apparently it's the posterior wall (I think she said this is the back wall?!). Absolutely no improvement in the past 6 months. This seems to mildly concern her, but she just mentioned that it was a typical mitochondrial sign, and that's what she still believes is at the root of Monkeyman's issues
So she prescribed the two medications that most mitochondrial patients have to take. Q10 and Caritinine (hoping I'm spelling this correctly). She wanted him to start taking this a year ago already, but he was only 5 and oppositional with us about taking his Reflux medication whole. I had to open the capsule and throw the contents in his mouth (Peanut also does this....soooooo cute!!). Until Monkeyman turned 6 early this year. Like a lightswitch flipped, he suddenly asked to swallow the capsule whole, and voila! No turning back.
(Just a quick side note. We went to a 3rd opinion cardiologist, who said he can't see the thin heartwall. He only did a 10-minute sonar, and our GP afterwards explained to me how the sonar have to take the still image of the beating heart at just the right moment. This is extremely tricky, and thus not an exact science. He said that he personally would go with the opinion of the doctor that has seen the child for 6 months, and done 4 sonars on, and who takes a bit longer to do the sonars and take the still images. He wasn't slamming either dr, just giving his opinion to a mom that was very conflicted about different medical opinions. So, we're treating Monkeyman as if he does have the thin heartwall, though always hoping that it will improve/dissapear one day, instead of turning into dilated cardiomyopathy.)
Anyway, so the cardiologist asked us to now try him on these mitochondrial medications, even though it's absolutely massive pills, and it's 4 pills 3x a day. She told us to give high dossages for one month, and then phone her. If it seems to have helped him, then it points to mitochondrial. With that information, she can then maybe start ordering some of the tests the mitochondrial specialist will need (kidney and liver tests, muscle biopsy, etc.) This will spare time. Though, to test mitochondrial disease, he will need to be off the meds for at least 2 months. So at the VERY least, we're looking at a 3+ months before we'll have any more information. Except if the meds does nothing for him. Then it means it could be something other than mitochondrial, and we need to widen our search. I'm not sure where we'll draw the line again though. But let's not worry about that yet.
So yes, this is where we stand. Three months of wait and see. Like always. Wait and see. At least, this time it feels to me like we have a plan of action. We're not just passively sitting and waiting to see a specialist that's so overbooked that not even a doctor can get us in to see her! We're trying something to see if it helps Monkeyman. I'm prepared to almost try anything at this point! To help my son. The week before we went to see the cardiologist, he had a huge crash again. It was a hard, hard week. Lots of crying (on his and my part!). Lots of sighing and lying down and moaning and groaning and just being miserable all around. I don't really know what brought it on. Maybe a virus. Because on the Friday before we saw the dr, he vomitted twice. During the night and early morning. No other symptoms, no fever. Just a long recovery again because of dehydration (also a very typical mitochondrial sign, apparently. The child struggles to get his energy back for longer than his peers after being dehydrated.) The difficult week went on for another, making it 2 in a row. On Saturday he was being particularly awful. I took him to a family restaurant with a friend who has a child of the same age. He was looking forward to it, but once there, everything was just too much for him. Urgh, such days are difficult!! He recovered by Sunday, and today he's MUCH better. Despite being in school this morning. Thank goodness!
Oh, and just quickly. I asked the dr about Monkeyman's toe- and fingernails. Fortunately, with the little nailbrush, I got it very clean. (I'll try to take some pics again at some point, but I don't want to put too much emphasys on this and make it a bigger deal to him than what it is.) Unfortunately, the dr admitted that she had absolutely no knowledge or experience on this. She has never seen anything like it and had no idea what it meant. She did say that no way could it be from the mumps, and besides, she noticed multiple lines as well, which negates it being from mumps (only). She also noticed that his pinky toenail is loose. I kinda ignored it, because I didn't want that to become the focal point of the visit, or the problem with his nails. She noticed it in any case, and found it remarkedly and interesting (probably because there's clearly no infection, fungus or other usual cause). But, apart from admitting that she didn't know why or what happened to his nails, and that she doesn't believe it to be from the mumps, she said nothing. So afterwards, I realised that I'm not sure if I should ask anyone else about this? I was concerned that it was his heart, and that's been ruled out. She also palpitated his liver and said to her it seems fine. So I'm happy that there's nothing too serious going on, causing the nails to look that way. I hate medical mysteries, and I'm going to think about this alot, but I don't believe it's necessary to take it futher?
Something else that I asked her about, again, because he complained alot from it on that day, that would also tie into this mitochondrial disease theory, is his legpains. Since he was a little boy of not even 2, he has been complaining about debilitating pain in his legs. Some days, it would be so bad for a few minutes, that he really couldn't walk without starting to cry. It usually passes relatively quickly, though a feeling of tiredness or pain always remains for hours afterwards. Some nights, it woke him up or kept him awake. But mostly, it happened during the day. Usually mornings and afternoons. He also complains about his legs being tired. Really tired. Not just that lazy tired of "aaawww Mom, do we really have to go to the shops"?? Not that tiredness. But something that makes him turn pale if I try to push him. And then all the typical tiredness signs will appear. The hooded eyes, the mouth pulled tightly, the pale skin, the shoulders hanging, the feet dragging. The sighing.
I complained about this leg pains to EVERY doctor we've ever seen. Whether it was for a cold, his heart or whatever. I mentioned it. Always. The drs would all seem mildly concerned, look at his legs, palpitate them, and then either stay quiet or mention "growing pains". Well, I'm at the point where I'm declaring loudly and with conviction. Bullsh*t. This IS NOT GROWING PAINS. I have 3 other children. And this is NOT growing pains. I'm relatively sure that our GP that said it's not leukemia, is right. Because like him, I believe that by this time, others signs would've shown up. In his bloodtests or whatever. He would've been dead by this time. Because it's been going on for at least 5-6 years. So if not growing pains, or leukemia, what is it?
I read that this is a VERY typical mitochondrial symptom. Muscle and leg pains. Some children's legs gets so painful, that they're unable to walk. Some just continue to always complain about legpains. Sounds familiar?
So yes, enough symptoms that I understand why he has now been put on the mitochondrial cocktail. Wish us luck? I have no idea what for, though. For improvement? No, my heart says no. Despite me wanting answers (and definitely improvements!!), I don't want that answer. So maybe, hold thumbs that unlike the vitathion (that we're also still continueing daily), this cocktail does NOT bring improvements. I'd rather start the search over!!
This year, exams has been crazy in our house. I summarise both the 11-year old and the 13-year old's work for them. You can shake your head in appallment, disgust, dissaproval, surprise, or whatever emotion. It does not change the fact that it's the ONLY way my children can currently pass. So my choice is... summarise for them and see them study their butts off and pass? Or, see them study their butts off with their own summaries/no summaries, and see them fail. What would you have done? I'm a SAHM, I have the time, sort of, so I summarize. Because currently, that's what they need. It won't be the status quo for end of time. But for now, this is what we do, because this is what my children needs. But it takes ALOT of hours. Alot. Thus, this blog is last in line. I did, however, took a bit of time today for myself, and I know a number of you are curious how the cardiologist's visit went last week. So here's the update on that.
Overall, it's been a REALLY good visit. Walking out of there, I was sooooo happy that we took him back. Really happy. It didn't start out that way, but fortunately it ended good. You know what I find interesting/puzzling/frustrating? The assumption that almost all the doctors makes within the first 3 minutes of us being in their offices with Monkeyman. I always have to stop explaining why we're there, to let them finish with the proposed solution to their assumptions, and then I explain that no, in Monkeyman's case, this is not a new symptom (so it can't be cancer/depression/low iron/sleep apnea/too little sleep/bad diet/too many late nights/just a phase/psychological/personality/etc. etc. etc). It didn't begin when he started school 10 months ago, or because of summer allergies or because something huge changed in his life like the birth of a baby. We didn't just noticed it the past 6 months or 12 months or even 2 years. It's been there all of his life. From when he was a tiny baby of 4 or 5 months when I noticed it for the first time (and started asking doctors for help), until today, at 6-year old. All of his life. Fortunately, after I explain this (for the millionth time), the doctors usually stop and listen more attentively and redirect their thoughts.
I've wondered why is it so difficult to get that though? Why do I have to explain, and explain again and again to the same doctors that this is not new? I theorise it's because it's extremely rare to deal with a child that has been tired all of his life (adults complaining of tiredness for 6 years, yes, but children?). A physical, draining tiredness that you can see the effects of, on his face and in his body and attitude. Even if there was/would/have been a child that the doctor knows of (that could provide a frame of reference for him/her), the doctor would assume that after 6 years, we would have had the answers already. Or thrown our toys out of the cot or something, because we demand answers.What parents would let this be for 6 years?? So it's impossible for them to wrap their mind around seeing a healthy, normal child (without structural heart or other abnormalities) that presents with tiredness for 6 years as the oldest and mostly only symptom. So they skip over that bit of information the mom gives them, and assume the tiredness must be a new symptom. Until I correct them. And then you can see they hear me. Even though they can't, for themselves, always see it during that 30-minute appointment. Not even all my family can. Most people have to go on my and Monkeyman's dad's word that this is there. That it's real. Just like I can hide almost all my medical problems, Monkeyman can too. And does. And nobody would be none-the wiser, until I either point out the little details, or if they're really astute, they'd notice them and ask me about it. Like my sister, and her husband. They've noticed it over the years, and asked us about it. For example the circles under his eyes, and sometimes being or turning pale.
Sorry, now I'm rambling again. Let's continue with the appointment.
The cardiologist did a thorough exam again, including an EKG and heart sonar. She said his heart function looks good, but his heart wall is still too thin at 2 places. Apparently it's the posterior wall (I think she said this is the back wall?!). Absolutely no improvement in the past 6 months. This seems to mildly concern her, but she just mentioned that it was a typical mitochondrial sign, and that's what she still believes is at the root of Monkeyman's issues
So she prescribed the two medications that most mitochondrial patients have to take. Q10 and Caritinine (hoping I'm spelling this correctly). She wanted him to start taking this a year ago already, but he was only 5 and oppositional with us about taking his Reflux medication whole. I had to open the capsule and throw the contents in his mouth (Peanut also does this....soooooo cute!!). Until Monkeyman turned 6 early this year. Like a lightswitch flipped, he suddenly asked to swallow the capsule whole, and voila! No turning back.
(Just a quick side note. We went to a 3rd opinion cardiologist, who said he can't see the thin heartwall. He only did a 10-minute sonar, and our GP afterwards explained to me how the sonar have to take the still image of the beating heart at just the right moment. This is extremely tricky, and thus not an exact science. He said that he personally would go with the opinion of the doctor that has seen the child for 6 months, and done 4 sonars on, and who takes a bit longer to do the sonars and take the still images. He wasn't slamming either dr, just giving his opinion to a mom that was very conflicted about different medical opinions. So, we're treating Monkeyman as if he does have the thin heartwall, though always hoping that it will improve/dissapear one day, instead of turning into dilated cardiomyopathy.)
Anyway, so the cardiologist asked us to now try him on these mitochondrial medications, even though it's absolutely massive pills, and it's 4 pills 3x a day. She told us to give high dossages for one month, and then phone her. If it seems to have helped him, then it points to mitochondrial. With that information, she can then maybe start ordering some of the tests the mitochondrial specialist will need (kidney and liver tests, muscle biopsy, etc.) This will spare time. Though, to test mitochondrial disease, he will need to be off the meds for at least 2 months. So at the VERY least, we're looking at a 3+ months before we'll have any more information. Except if the meds does nothing for him. Then it means it could be something other than mitochondrial, and we need to widen our search. I'm not sure where we'll draw the line again though. But let's not worry about that yet.
So yes, this is where we stand. Three months of wait and see. Like always. Wait and see. At least, this time it feels to me like we have a plan of action. We're not just passively sitting and waiting to see a specialist that's so overbooked that not even a doctor can get us in to see her! We're trying something to see if it helps Monkeyman. I'm prepared to almost try anything at this point! To help my son. The week before we went to see the cardiologist, he had a huge crash again. It was a hard, hard week. Lots of crying (on his and my part!). Lots of sighing and lying down and moaning and groaning and just being miserable all around. I don't really know what brought it on. Maybe a virus. Because on the Friday before we saw the dr, he vomitted twice. During the night and early morning. No other symptoms, no fever. Just a long recovery again because of dehydration (also a very typical mitochondrial sign, apparently. The child struggles to get his energy back for longer than his peers after being dehydrated.) The difficult week went on for another, making it 2 in a row. On Saturday he was being particularly awful. I took him to a family restaurant with a friend who has a child of the same age. He was looking forward to it, but once there, everything was just too much for him. Urgh, such days are difficult!! He recovered by Sunday, and today he's MUCH better. Despite being in school this morning. Thank goodness!
Oh, and just quickly. I asked the dr about Monkeyman's toe- and fingernails. Fortunately, with the little nailbrush, I got it very clean. (I'll try to take some pics again at some point, but I don't want to put too much emphasys on this and make it a bigger deal to him than what it is.) Unfortunately, the dr admitted that she had absolutely no knowledge or experience on this. She has never seen anything like it and had no idea what it meant. She did say that no way could it be from the mumps, and besides, she noticed multiple lines as well, which negates it being from mumps (only). She also noticed that his pinky toenail is loose. I kinda ignored it, because I didn't want that to become the focal point of the visit, or the problem with his nails. She noticed it in any case, and found it remarkedly and interesting (probably because there's clearly no infection, fungus or other usual cause). But, apart from admitting that she didn't know why or what happened to his nails, and that she doesn't believe it to be from the mumps, she said nothing. So afterwards, I realised that I'm not sure if I should ask anyone else about this? I was concerned that it was his heart, and that's been ruled out. She also palpitated his liver and said to her it seems fine. So I'm happy that there's nothing too serious going on, causing the nails to look that way. I hate medical mysteries, and I'm going to think about this alot, but I don't believe it's necessary to take it futher?
Something else that I asked her about, again, because he complained alot from it on that day, that would also tie into this mitochondrial disease theory, is his legpains. Since he was a little boy of not even 2, he has been complaining about debilitating pain in his legs. Some days, it would be so bad for a few minutes, that he really couldn't walk without starting to cry. It usually passes relatively quickly, though a feeling of tiredness or pain always remains for hours afterwards. Some nights, it woke him up or kept him awake. But mostly, it happened during the day. Usually mornings and afternoons. He also complains about his legs being tired. Really tired. Not just that lazy tired of "aaawww Mom, do we really have to go to the shops"?? Not that tiredness. But something that makes him turn pale if I try to push him. And then all the typical tiredness signs will appear. The hooded eyes, the mouth pulled tightly, the pale skin, the shoulders hanging, the feet dragging. The sighing.
I complained about this leg pains to EVERY doctor we've ever seen. Whether it was for a cold, his heart or whatever. I mentioned it. Always. The drs would all seem mildly concerned, look at his legs, palpitate them, and then either stay quiet or mention "growing pains". Well, I'm at the point where I'm declaring loudly and with conviction. Bullsh*t. This IS NOT GROWING PAINS. I have 3 other children. And this is NOT growing pains. I'm relatively sure that our GP that said it's not leukemia, is right. Because like him, I believe that by this time, others signs would've shown up. In his bloodtests or whatever. He would've been dead by this time. Because it's been going on for at least 5-6 years. So if not growing pains, or leukemia, what is it?
I read that this is a VERY typical mitochondrial symptom. Muscle and leg pains. Some children's legs gets so painful, that they're unable to walk. Some just continue to always complain about legpains. Sounds familiar?
So yes, enough symptoms that I understand why he has now been put on the mitochondrial cocktail. Wish us luck? I have no idea what for, though. For improvement? No, my heart says no. Despite me wanting answers (and definitely improvements!!), I don't want that answer. So maybe, hold thumbs that unlike the vitathion (that we're also still continueing daily), this cocktail does NOT bring improvements. I'd rather start the search over!!
Saturday, October 25, 2014
And here we go again...
You know what I find strange? Months will pass where we'll just breath and live and forget that our children have undiagnosed problems or uncertain futures. And then out of the blue, multiple problems will arrise, reminding us that we're not off the hook just yet. That we had a respite, but that was all. We can deal with one problem, but then we need time to forget about it before the next one comes up. Handling all these little mysteries all at once.... the unknowns, it's difficult. So not only do we now have to stress and worry about why Boeboe's function is declining, but in the last week, three things popped up with Monkeyman's health. All three could be nothing. All three could be something. All three most likely is nothing. But until we get the all-clear, you can't help but worry. We're parents, it's normal! Ai.
Firstly, last week he showed me the Beau lines (I blogged about it in the previous post). I don't like the look and sound of it. Maybe I'm over-reacting, but since we've been postponing his checkup with his cardiologist for 6 months now, I decided to take him now. That's happening on Monday.
Here's some pics, explaining why I find this nail-thing so puzzling.
So what was the second thing happening with Monkeyman this week? Well, we went to their new school to drop Mr N off for some event there. As we climbed into the car, Monkeyman kinda hesitated, before attempting to get in for a 2nd time. He made an angry/frustrated noise, so I asked him what's up. He said everything is blurry. Apparently, it's been like that for months/weeks. He can focus on an object clearly, but everything around it is blurry. Doesn't matter if it's near or far. I'm not sure if he describes it accurately, but those were his words. I've booked an appointment with an optometrist tomorrow for him. Our usual optometrist could only see him in December, but a friend urged me not to wait too long with such a thing. Especially as it seems that his vision was still fine when the school nurse came around and tested the grade R's eyes in May/June of this year.
(Edited: I took him to the optom this morning before publishing the post. Optom says he has absolutely perfect vision. The problem is that his eyes are extremely dry, and that causes the bluriness. The cause of the dryness are almost certainly from his reflux medication, which was upped in June due to him aspirating his stomach acid. So we can't lower the meds dossage, thus we need to treat the dryness. He got an ointment I have to put in his eyes every day. We'll see how it goes. I'm so relieved it's nothing more serious!!)
The third thing was that about a month or so ago, I took the kids to the dentist. Shortly thereafter, his first two adult teeth appeared. The top ones, not the bottom ones as it was supposed to. A while after that, the bottom two came out. Now, there's 2 things that worries me a bit. The one top tooth is coming out at a crooked angle, though I know that other future adult teeth can still straighten this out in time. The other thing, is that the bottom teeth are coming out towards the back and also at a bit of an angle, all the while the 2 baby teeth isn't even out yet. Not even loose much. :-( So he currently has 2 rows of teeth, so to speak. I guess I need to ask the dentist if this is a worry, or a wait-and-see thing.
Ontop of all of these worries, he woke up sick two nights ago. I kept him at home, and he had about 300ml of fluids and half a slice of toast for the whole day. But he's on the mend again, fortunately, so not a really bad bug. Just another worry, another thing that's putting stress on us. It's never nice seeing any child ill, but one that you know have immunity problems, just make the stress doubly hard to handle at times.
Well, just to lighten up the post a bit. Here's a few more pics.
Firstly, last week he showed me the Beau lines (I blogged about it in the previous post). I don't like the look and sound of it. Maybe I'm over-reacting, but since we've been postponing his checkup with his cardiologist for 6 months now, I decided to take him now. That's happening on Monday.
Here's some pics, explaining why I find this nail-thing so puzzling.
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| This is very difficult to see. The Beau's lines on these fingers are already almost grown out. It's right there on the tip of the finger, just before the white. The 2 fingers on the right (his left) shows it best. |
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| These thumbs are the reason it irritated him so much that he bugged me about it. Look at how it flakes off. Then that gets caught and hurts. You can see how deep the grooves go. The darker bits are trapped dirt, I'm guessing. Maybe dried blood. How could his body have dealt with something so traumatic and intense, that the nails stopped growing long enough to leave such deep grooves, without me knowing?? |
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| His right foot. You can see the Beau's lines, and if you look closely, you'll notice multiple ones on some of the nails. I don't know what the brown parts and bits are. My guess is that his nails stained from the red dirt that Pretoria (close where we live) is famous for. He goes to school barefeet. You can see it's also stained the toes themselves. I did try to scrub it off a bit, but failed. I'll try again with a little brush tomorrow, before we go to the dr on Monday. |
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| His left foot. You can see the multiple Beau's lines here more clearly. Look at the 2nd and 4th toe. What's also bothering me, is that if you look at the very top part of the big toes, just where the nail grows over the toe, there's a red blotch/band/stripe underneath the nail, on the nailbed itself. Apparently, this is a sign of disease or illness as well. |
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| Here you can see it better. The dirty/yellow/brown part is the Beau's lines. The nail is so thin there, it flakes off, which I think makes it more susceptible for trapped dirt, which is why it's so very dirty. Well, I'm hoping it's dirt, and not a sign of his liver or something! If you look closely, you can see more than one white line, thus, multiple Beau's lines, in that brown part. In short succession. Very intrigueing. The light reflects brightly on his nails, but it's still possible to also make out the red halfmoons of the nailbed itself, on the other end of the nails. |
So what was the second thing happening with Monkeyman this week? Well, we went to their new school to drop Mr N off for some event there. As we climbed into the car, Monkeyman kinda hesitated, before attempting to get in for a 2nd time. He made an angry/frustrated noise, so I asked him what's up. He said everything is blurry. Apparently, it's been like that for months/weeks. He can focus on an object clearly, but everything around it is blurry. Doesn't matter if it's near or far. I'm not sure if he describes it accurately, but those were his words. I've booked an appointment with an optometrist tomorrow for him. Our usual optometrist could only see him in December, but a friend urged me not to wait too long with such a thing. Especially as it seems that his vision was still fine when the school nurse came around and tested the grade R's eyes in May/June of this year.
(Edited: I took him to the optom this morning before publishing the post. Optom says he has absolutely perfect vision. The problem is that his eyes are extremely dry, and that causes the bluriness. The cause of the dryness are almost certainly from his reflux medication, which was upped in June due to him aspirating his stomach acid. So we can't lower the meds dossage, thus we need to treat the dryness. He got an ointment I have to put in his eyes every day. We'll see how it goes. I'm so relieved it's nothing more serious!!)
The third thing was that about a month or so ago, I took the kids to the dentist. Shortly thereafter, his first two adult teeth appeared. The top ones, not the bottom ones as it was supposed to. A while after that, the bottom two came out. Now, there's 2 things that worries me a bit. The one top tooth is coming out at a crooked angle, though I know that other future adult teeth can still straighten this out in time. The other thing, is that the bottom teeth are coming out towards the back and also at a bit of an angle, all the while the 2 baby teeth isn't even out yet. Not even loose much. :-( So he currently has 2 rows of teeth, so to speak. I guess I need to ask the dentist if this is a worry, or a wait-and-see thing.
 |
| My very handsome young man. Here you can see, at long last, after loosing his teeth at age 2 already due to untreated reflux (and lost implants twice over the years), his adult teeth has now finally started to arrive. Out of sync, but who cares? He's soooo happy to now be able to eat corn on the cob like other people do. Straight from the cob!! |
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| His bottom adult teeth has also appeared. But our worry is as you can see here, the baby teeth is still there. And the adult tooth on the left (his right) is coming out to the side of the baby tooth, not directly underneath it, to push it out. (It's the white dots directly behind the 2 bigger baby teeth right in the middle.) |
Ontop of all of these worries, he woke up sick two nights ago. I kept him at home, and he had about 300ml of fluids and half a slice of toast for the whole day. But he's on the mend again, fortunately, so not a really bad bug. Just another worry, another thing that's putting stress on us. It's never nice seeing any child ill, but one that you know have immunity problems, just make the stress doubly hard to handle at times.
Well, just to lighten up the post a bit. Here's a few more pics.
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| My beautiful daughter turned 11 last month. Her birthday wish? Studs in the ears! I always said that it's their body, they decide the if, when and where of putting holes in it. She was soooo excited, and very proud. She felt so grown-up! She's looking after it beautifully, so I'm glad she chose to wait until now. |
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| Just a nice pic! We all decorated her cake together. She took party packs to school, as well as to her art class after school. And then we had a little family party at home. |
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| Added this one specially for the hair!! Boeboe's curled even more. I love it! |
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| Isn't she the most gorgeous little girl ever? Here, her hair was just washed. It lasts about an hour or two, before we're back to the curls of the above pic, LOL. |
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| She LOVES to pose for pics! Hahaha. So sweet. |
Saturday, October 18, 2014
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.
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.
Friday, October 3, 2014
The school issue - at long last
Sorry for the time delay. I don't really have any excuse, other than - it's actually going well!! We're still waiting on the mitochondrial specialist with Monkeyman (the pulmonologist mailed today to let us know that she's still following it up for us), so we used the time to just relax, and realise that life is still good. Still worth living. We got rid of the stress we were under. We slept alot, played alot of games together, we ate well, etc. We participated in school sport and cultural events, I treated the kids regularly with an ice cream or such out of the blue. I tried to smile more, laugh more, touch base with them more, etc. It's really going well with us. All of us! Yay!!
So. Here's the sordid school affair post.
When we were looking at schools for our eldest at age 5, we only considered public schools. Since we're Afrikaans and living in a mostly-Afrikaans community, the public schools around here are plentiful and exceptionally good. There were no reason to look futher than what was around us, and I come from the public school system myself, with parents who worked for the Department of Education.
We went to 2 of the nearest schools' open days. The one didn't impress us at all. They had 6 grade R classes, with 20 kids each, thus 120 children. I thought it CRAZY. My precious, shy, quiet little boy, one of 120 other little ones??? No way!!
The 2nd school had the opposite effect on us. They impressed us immediately. The way the school was run, the teachers, the school grounds and surrounds, etc. Most of all though, it was the fact that they were the smallest school around that impressed us most. There were only 2 classes in grade R, with a total of about 40 kids. We were assured that classes will be kept to 18-20 kids per class, and in grade 1 to 22 children.
Yeah. Right.
We believed it!
In the beginning, the school was so great. I really loved it. Mr N was so happy in grade R, and adapted very easily. The 2 teachers were very good and experienced, Mr N made friends, and it was a real "community" spirit. Even when Boeboe joined 2 years later, it was still a fantastic school. The standard was good, though of course by this stage, we had a few smallish complaints. Like the fact that the grade 1 teacher didn't teach them well enough how to form letters. Both my children struggles today to know where a letter has to start. It's a pity. Still, it was small, normal complaints. No school is perfect, and not all teachers at a good school are exceptional.
When Boeboe started grade R, there were about 54 kids, and still just 2 classes. So she was one of 27! We had no choice but to accept this. She was happy, and being amongst 54 kids were still good. She did well and made a few good friends. Most of the other surrounding schools were all well over a 100 grade R's. So 54 still counted as a "small" school.
As they went up in grades, there were more and more classes added, so in grade 1 Boeboe was one of 22 kids, in 4 classes. In a way, it helped, of course. 22 vs 27 in class made a big difference. But being 1 out of 54 kids in grade R was much better than being 1 out of 88 kids in grade 1!!! People seemed to mostly being bothered by the number of kids WITH their child in the classroom. To me, that's not the only important thing. When there's a breaktime, or a sports event or practice, or something going on, even some periods like MBK (psychical, I think called PT in America?), then the WHOLE grade participates together. So then you're one tiny, shy little girl out of 88 others. It just cannot be easy or nice, not if you have Boeboe's personality. The more movement and activity there is around her, the more she backs into a corner, and tries to hide away. Quite similar with Mr N. So over the years, they dissapeared more and more. They had less and less friends. They didn't feature anywhere anymore. No sports, no culture, nothing. They just literally dissapeared. (Apart from Mr N's tennis, in which he made team and competed in the legue for his school. He enjoyed it thoroughly!!)
Now, it gets worse. Where Boeboe and Mr N are each 1 out of about 100 in their grade, Monkeyman is one of 150 grade R kids!!! Put into 6 classes, thus 25 kids per class. Usually without any assistants. Just the teacher and the 25 kids. We're lucky though, there's a young girl studying to become a teacher, and she's assigned to our class, so Monkeyman does have an assistant teacher. Thank God. But just the thought that for the next 6 years, he's always going to be 1 out of 150 kids, gives me the creeps. 1 out of 150 others vying for the 6 teachers' attention, trying to do academically well, participating in events and sports and compete. He's gonna dissapear too!!! So the school grew from about 700 when we started there, to almost 1000. And in the next 6 years, this is going to grow to about 1400 (because they added 50 kids into grade R, that will be phased in for grades 1-7).
The other problem I have with 100+ kids per grade, is that from grade 4, when children starts to have different subjects with different teachers in our country, that means that for example a subject like maths, the teacher have 4 classes in that grade that he teaches. So in total, he still have 100+ kids whose homework he has to check, 100+ exams he needs to mark, 100+ kids who he has to get to know and make sure they stay "up to par". (And 150 in the future with Monkeyman!) This, I believe, is where a load of things go wrong with the kids. Because no teacher has the time to mark homework a couple of times a week or even once a month, when he has 150 books to work through! No teacher has the capability, to know which children of that 150 has fallen behind or didn't understand a part of the work. And just think about it. What human being will enjoy having 6 classes every day, where they have to repeat the work EVERY TIME. Six times in a row. Every day. How boring!! You'll have to be an exceptional teacher to keep that momentum going every day, and make sure the 6th class get the same enthusiasm and effort that the first one did!
I know that in alot of countries, it's normal to have schools of 1000 or 2000 or even more kids. But I grew up in a school where we were 150 kids from grade 1 to grade 12! So seeing 150 kids in a single grade, is seriously overwhelming to me. I really think that it was my saving grace, being in such a small school. I'm pretty sure things would've turned out much worse for me otherwise. As I'm seeing happening with my kids. They don't have autism. But they both have a lot of autistic traits. Diagnosed as such by 2 specialists over a couple of years in Boeboe's case. And I see the same in Mr N, though not nearly as much or as bad as in Boeboe (who doesn't have enough traits to have Aspergers, but a good few that it was suspected numerous times). This, I believe, is one of the reasons my children suffer in school. I know they'll be fine. They have been fine, and will continue to be fine, in their current school. But will they ever excell again?? No. Will they ever reach their full potensial again? No. Will they ever do academically as well as they're able to? No. Not until we, as parents, realise that this setup isn't working for them. Which we did.
When Mr N was 4, he was evaluated by an occupational therapyst and we realised we have an extremely intelligent little boy. (He for example tested age 9 and above on all levels bar one, at age 4). It was confirmed by his neurologist a couple of years later. So we weren't surprised when he got very high marks during grades R-3. Even grade 4, when they had 9 subjects (he did a different curriculum to what's done today), wrote exams and had classes with different teachers (not 1 teacher all day anymore), he still did very well. Mostly what I think the American's call "straight A's". Grade 5 and 6 he went over from the old education system, to the new curriculum introduced by the department of Education. Called CAPS. And his marks went down. We left it be. We thought he was just spreading his wings, testing boundaries at age 11 and 12. All normal, not true?
Then he started in grade 7 this year. And his average fell with more than 20%. Not only that, some individual subjects he did atrocious. Normally, when something like this happens so quickly, on this scale, everyone would assume something terrible is wrong. No, not our school. Because not only did Mr N's marks fell, ALL the grade 7's marks fell. Most with an average of about 20%. So clearly it wasn't Mr N specific, or something that happened to only him, that could explain it. All the parents were up in arms and got very upset. The school pacified us and said oh, don't worry. All kids do badly in the first (of 4) exams in grade 7, because grade 7's curriculum is part of high school, so even though they're psysically still part of the primary school, they're treated as high school students. And this is a shock to the system, so their averages usually takes a dip, which recovers itself by the 2nd exam.
This didn't sit well with me. I'm extremely involved in my children's lives, and know exactly what they study, how the work looks, what it's about, etc. I had my own theories about what went wrong with MY child. Not the class, group or whatever. Just MY child. But the teachers all assured us we're worrying about nothing. Yeah right. Second exam came round, and 59% of the kids failed. Yes, read that again. 59% of the grade 7's failed their June exams. FAILED. Not struggled. Not fell behind or dipped in average. THEY FAILED. Almost 60% failed. How is that even POSSIBLE??????
This time, the parents were stinking, blinking mad. And what did the school do? They refused to listen to our rants. They organised an information evening where THEY told US what went wrong, why and what they're doing to fix it. Without EVER giving the parents a voice, or a chance to voice their grievances. They let the Department of Education came, who did a thorough investigation, and determined that the standard of our exams were a bit "too high", "too difficult", "too advanced", in some subjects. But that there's not really anything wrong. Not with the school, the general standard or the teachers.
So where did that leave us? Well, the school put some (really wonderful) steps in place which has made a difference already. For one, they employed another teacher so that instead of the 3 teachers for grade 7, there were now 4. Thus, 24 kids per class instead of the 32 they were during the first half of the year. They also spread the workload of the teachers. And all math classes had 2 teachers in the classroom. Though maths was the least of Mr N's worry. He still did exceptionally well in it. Unfortunately, a number of children were not as lucky, and maths was one of the subjects that needed urgent help the most. You can see why I thought my child's problem wasn't completely the same as everyone else's problem.
So what to do? We didn't know. We were scared, we felt lost, and very, very worried. What would happen with our boy in High school, grade 8, next year? Personally, I didn't believe it was just the standard of our current school's exams that were too high. Or the fact that the teachers were expecting too much from kids that were still just... kids. My theory goes much, much bigger than that.
When Apartheid was abolished, the government overhauled the whole education system. We had a fantastic education system for about 4 decades, but unfortunately it was mostly implemented in the so-called "white" schools. So I understood that the new government thought it best to overhaul the whole education system. Unfortunately, within 5 years, it was clear that the new system was failing. So again, a new system was designed. This system failed as well, though there were definite margins of improvement. So, they tried a third system. My children was taught this system, called OBE (outcome based education). Mr N was taught OBE in grades 1-4. I disliked OBE intensely. It was cumbersome, it failed to teach the basics as repeatedly as was necessary to instill a good foundation, and the workload was too much. It also relied heavily on teamwork between children, which was a drawback to someone like Mr N. He's extremely responsible, dilligent and respectful. He could not understand how or why children would act undisciplined in class, disrespectful towards the teacher or uninterested in doing their work. Trying to work in a team with such children caused him alot of frustration and marks worse than what he would've gotten on his own.
So when OBE was replaced, once again, with another education system, I was one of those that cheered hardest. Especially when we realised that the Department of Education has turned full circle, and has gone back to a system similar to the one used during Apartheid. There were less teamwork, and a little bit less tasks, projects and such (still way too much for my liking). The one BIG advantage of the new system, called CAPS, were that they reverted back to handbooks. Yay!!! The old OBE system allowed the teachers to decide by themselves, on an individual basis, which workbooks and notes they're implementing. Now, with CAPS, there's prescribed handbooks like in our days (when I were a child). The handbooks are the same all over the country, so that any child could move to any school, and be on the same standard at any stage during any given year. So even if you move halfway throughout the year, the work is the same, and done at the same tempo, so the child just falls in in the new school, without missing too much. The Department of Education has set prescriptions for every teacher. What must be done when, which term, how long to spend on what chapter, etc. They even prescribed what tests or assessments must be done, how much it counts, and so forth. Very limiting to the teachers, but great for standardizing. I loved it! I loved the promise of CAPS. I loved what it would mean for my children.
Until it was phased in.
Slowly, I realised that with all the good it brought with it, there was one huge disadvantage. The workload was doubled. From OBE that was already too much for little minds, CAPS was worse. Much, much worse. The subjects in grade 4 and 5 were reduced from 9 back to 6, which were FANTASTIC and probably the reason why Boeboe can still cope. She would NOT have coped with the grade 4 that Mr N had to cope with, writing 9 exams and studying 9 subjects' work. BUT, the workload per subject has increased with the new system, and especially from grade 7. It's an inhuman amount of work they have to memorise, study, work through. And from grade 7 it's back to 9 subjects again.
This workload can be seen in 2 areas. The one is the sheer amount of work that's covered per year, as well as at what age this workload is covered. For example, with OBE, the children only really started on their 2nd language in grade 2. Now, with CAPS, they start in grade 1 (age 6-7). Instead of starting to write letters in grade 1, they now do it in grade R. Money-word sums in maths is now part of the grade 1 curriculum (even though they can barely read!!).
Instead of for example have 100 facts about the emigration of the Khoi and San in Southern Africa in grade 5, they now study 200 facts about it in grade 4, and again 300 facts about this in grade 5 and then another 600 facts about it in grade 7!! It's just absolutely crazy, the amount of work they want the kids to get through.
My son has studied the same and more facts about economic management in grade 7 than what I had covered in grade 12. The experiments he does in natural sciences is the same now in grade 7, than what we did in grade 10 and 11. Why do they do this? And what's the advantages?
I don't know. Maybe it gets the kids used to much more work than what we had to face. Maybe it prepares them better for univarcity. Because in our day, only the top 5% or so went to univarcity. It was for the elite. Now, every 2nd child goes and studies a bachelors degree!! No wonder the country has a problem with good handy people. People that can do the physical work needed to run a successful country.
So CAPS is a sign of our times. Getting kids ready for a world that's crazy. Expecting so much from 18-year olds at univarcity, and getting them ready to make it in this tough economic world of ours. I get it, and I understand that it was necessary. I still don't think CAPS is all bad. Not at all. The good still overshadows the bad of it. I think it's a wonderful step in the right direction for our kids. BUT, it's still just a step, in my opinion. I don't think it's the end result just yet. Because they're going to realise that does not matter at what speed the world change and evolves and adapts, children stay children. Children needs time, love and play to grow. To learn. You just simply cannot expect the same from today's 10-year olds, than what you expected of the 15-year olds of 3 decades ago, just because you think it's necessary!! The 10-year olds of today still needs the same amount of playtime, moddycoddling, love, nurturing and emotional guidance than what they needed a hundred and a thousand years ago.
So it's fine to say times have changed, and adapt the curriculum to this. But keep in mind that you're working with children. Not static objects. And children needs to be children. They need time. Time to love. Time to learn. Time to play. Time to study. Time to participate. Time to wait. Time to be lazy. Time to relax. Time to read. Time to do nothing. Time. They need time. And taking all that time away from them, and expecting them to still grow normally... it's certain to fail.
This is just my opinion. And why I say the issue is much, much bigger than just my little boy that didn't do well in school because the standard was "a bit high". Much, much bigger. There's a lot more I can say about this. About countries all over the world that push, and countries that starts to realise that what we need, is to get back to raising children, and not raising a workforce when they're just babies still. But this post is already way too long.
So our solution? Well, we can't change the world. We can't change our country's drive to get back to the standard we had before Apartheid was abolished. We can't change our school system. We can't change our school. We just know that life should not BE like this. Life should not consist of studying day after day after day, for 5 weeks in a row, 4 times a year. Just to pass. Not when you're an above intelligent boy that should not have to study this hard. Life should not consist of a mom and dad's life revolving around exam times. We can't even visit friends for a coffee when it's exam time. We can't take an evening off where they just might get to bed too late, which might make them too tired to get the huge amount of facts into their heads the next morning. We can't even braai or do a family thing together for a Saturday lunch, because they have to study. The little ones have to walk on tiptoe, so as not to disturb the studying kids. There's no playtime really. Just small little breaks. They study, and study, and study. And I'm the one standing with a whip behind them, encouraging, summarising, quizzing and supporting and making sure they study. Because if I don't, if they don't, they FAIL. And what will happen when they fail? What future will they have when they can't even pass primary school?
Life should NOT be like this for primary school children. Life should NOT be like this at all. Not for us as parents either. Yes, small, short bursts of tests or exams are necessary and good. But 20 of the 52 weeks a year??? At age 10??? No way! I refuse to believe that this is normal nor acceptable!!
So what can we do about it? We can look at our children as individuals, list our options, and see which one fits them best. And that's precisely what we did. Our options were limited, pity. But for example, things we can do to get them educated are:
So if all of the above options aren't really options, what can we do? Private schooling. It's the only solution I've researched, that seems like it might just be the answer to our prayers. Unfortunately though, we can't afford the expensive, big private schools. Not at all. So I never looked into this option until a friend of mine told me about a school close to our house that has gone through a few changes which made it an option for us. Financially, and in other ways. So here's the advantages (for OUR family, OUR kids) of this particular school:
There's more advantages, like all 3 children in one school, not far to drive, etc.etc. But those are kinda cherry on the cake advantages, not reasons to move your child to that school. The above is the major advantages to us.
It's been a really, really hard decision for us, and we've been thinking almost constantly about it for about 2-3 months now. So it's not taken lightly. We've spoken to the principle, the teachers, the owner of the school, some of the kids, etc. We've looked at it from different angles. We spoke to other parents whose kids were there, but who moved them out for various reasons to other schools. So we're trying to go into this with huge, open eyes. Still, it's scary. It's been a really difficult decision, and it consumed us. We've almost reached the point now where we believe this will be the right thing for our family.
Change, to me, is one of the most difficult things. I hate change. My eldest has been in his school for 8 years. Boeboe has been here for 6 of that 8. They've both only been in 2 schools. Their pre-school/playschool from ages 4-5, and then this current primary school. I don't do change well, not even for my children. They'll probably be fine, but for me, this is huge. This is really, really, really huge. If I hated their current school, maybe it might have been easier. But I still like them. I still think they're one of the best in the area. I still believe in them! But for my kids, we need something different. It took us a long, long time to realise this. That despite our children's good qualities, their dilligence, their intelligence, they're not coping in normal, big-city, mainstream school. So we're moving them. And it saddens me no end. Every day this week, I parked the car, and after 8 years of parking in the same few spots, I get tears in my eyes. I walk through the gates, I look at the flowers, the neat grounds, the little strawberries on the grounds, and I just want to cry. I really love their school. And it saddens me to move the kids. To know that Monkeyman won't move over to the "big" side where the grade 1-3's are. That he won't get to wear his brother's old school clothes that I packed away for him. That we'll never have a photo of him on the fridge next to his siblings, in that school's clothes. That we'll never get to see him play in the school's tennis team as we did Mr N. Ag man, I can just cry. I absolutely hate change. It's gonna take me a few months to get used to the new school. Until then, I'm gonna be a mess of sadness, indecision, worry and stress. There's a number of negatives of the new school, that's positives in our current school, that I'll have to accept. Like the anonymity of being one of thousands of parents. I can just dissapear. Suits me perfectly. Now, in the new school, I'll be one of about 160 parents. No chance to dissapear. Anyway, we'll make this work. And I know it'll be better. Anything will be better than the year we had. Children should still be children, and it seems that in this new school, that's exactly what they will be.
So. Here's the sordid school affair post.
When we were looking at schools for our eldest at age 5, we only considered public schools. Since we're Afrikaans and living in a mostly-Afrikaans community, the public schools around here are plentiful and exceptionally good. There were no reason to look futher than what was around us, and I come from the public school system myself, with parents who worked for the Department of Education.
We went to 2 of the nearest schools' open days. The one didn't impress us at all. They had 6 grade R classes, with 20 kids each, thus 120 children. I thought it CRAZY. My precious, shy, quiet little boy, one of 120 other little ones??? No way!!
The 2nd school had the opposite effect on us. They impressed us immediately. The way the school was run, the teachers, the school grounds and surrounds, etc. Most of all though, it was the fact that they were the smallest school around that impressed us most. There were only 2 classes in grade R, with a total of about 40 kids. We were assured that classes will be kept to 18-20 kids per class, and in grade 1 to 22 children.
Yeah. Right.
We believed it!
In the beginning, the school was so great. I really loved it. Mr N was so happy in grade R, and adapted very easily. The 2 teachers were very good and experienced, Mr N made friends, and it was a real "community" spirit. Even when Boeboe joined 2 years later, it was still a fantastic school. The standard was good, though of course by this stage, we had a few smallish complaints. Like the fact that the grade 1 teacher didn't teach them well enough how to form letters. Both my children struggles today to know where a letter has to start. It's a pity. Still, it was small, normal complaints. No school is perfect, and not all teachers at a good school are exceptional.
When Boeboe started grade R, there were about 54 kids, and still just 2 classes. So she was one of 27! We had no choice but to accept this. She was happy, and being amongst 54 kids were still good. She did well and made a few good friends. Most of the other surrounding schools were all well over a 100 grade R's. So 54 still counted as a "small" school.
As they went up in grades, there were more and more classes added, so in grade 1 Boeboe was one of 22 kids, in 4 classes. In a way, it helped, of course. 22 vs 27 in class made a big difference. But being 1 out of 54 kids in grade R was much better than being 1 out of 88 kids in grade 1!!! People seemed to mostly being bothered by the number of kids WITH their child in the classroom. To me, that's not the only important thing. When there's a breaktime, or a sports event or practice, or something going on, even some periods like MBK (psychical, I think called PT in America?), then the WHOLE grade participates together. So then you're one tiny, shy little girl out of 88 others. It just cannot be easy or nice, not if you have Boeboe's personality. The more movement and activity there is around her, the more she backs into a corner, and tries to hide away. Quite similar with Mr N. So over the years, they dissapeared more and more. They had less and less friends. They didn't feature anywhere anymore. No sports, no culture, nothing. They just literally dissapeared. (Apart from Mr N's tennis, in which he made team and competed in the legue for his school. He enjoyed it thoroughly!!)
Now, it gets worse. Where Boeboe and Mr N are each 1 out of about 100 in their grade, Monkeyman is one of 150 grade R kids!!! Put into 6 classes, thus 25 kids per class. Usually without any assistants. Just the teacher and the 25 kids. We're lucky though, there's a young girl studying to become a teacher, and she's assigned to our class, so Monkeyman does have an assistant teacher. Thank God. But just the thought that for the next 6 years, he's always going to be 1 out of 150 kids, gives me the creeps. 1 out of 150 others vying for the 6 teachers' attention, trying to do academically well, participating in events and sports and compete. He's gonna dissapear too!!! So the school grew from about 700 when we started there, to almost 1000. And in the next 6 years, this is going to grow to about 1400 (because they added 50 kids into grade R, that will be phased in for grades 1-7).
The other problem I have with 100+ kids per grade, is that from grade 4, when children starts to have different subjects with different teachers in our country, that means that for example a subject like maths, the teacher have 4 classes in that grade that he teaches. So in total, he still have 100+ kids whose homework he has to check, 100+ exams he needs to mark, 100+ kids who he has to get to know and make sure they stay "up to par". (And 150 in the future with Monkeyman!) This, I believe, is where a load of things go wrong with the kids. Because no teacher has the time to mark homework a couple of times a week or even once a month, when he has 150 books to work through! No teacher has the capability, to know which children of that 150 has fallen behind or didn't understand a part of the work. And just think about it. What human being will enjoy having 6 classes every day, where they have to repeat the work EVERY TIME. Six times in a row. Every day. How boring!! You'll have to be an exceptional teacher to keep that momentum going every day, and make sure the 6th class get the same enthusiasm and effort that the first one did!
I know that in alot of countries, it's normal to have schools of 1000 or 2000 or even more kids. But I grew up in a school where we were 150 kids from grade 1 to grade 12! So seeing 150 kids in a single grade, is seriously overwhelming to me. I really think that it was my saving grace, being in such a small school. I'm pretty sure things would've turned out much worse for me otherwise. As I'm seeing happening with my kids. They don't have autism. But they both have a lot of autistic traits. Diagnosed as such by 2 specialists over a couple of years in Boeboe's case. And I see the same in Mr N, though not nearly as much or as bad as in Boeboe (who doesn't have enough traits to have Aspergers, but a good few that it was suspected numerous times). This, I believe, is one of the reasons my children suffer in school. I know they'll be fine. They have been fine, and will continue to be fine, in their current school. But will they ever excell again?? No. Will they ever reach their full potensial again? No. Will they ever do academically as well as they're able to? No. Not until we, as parents, realise that this setup isn't working for them. Which we did.
When Mr N was 4, he was evaluated by an occupational therapyst and we realised we have an extremely intelligent little boy. (He for example tested age 9 and above on all levels bar one, at age 4). It was confirmed by his neurologist a couple of years later. So we weren't surprised when he got very high marks during grades R-3. Even grade 4, when they had 9 subjects (he did a different curriculum to what's done today), wrote exams and had classes with different teachers (not 1 teacher all day anymore), he still did very well. Mostly what I think the American's call "straight A's". Grade 5 and 6 he went over from the old education system, to the new curriculum introduced by the department of Education. Called CAPS. And his marks went down. We left it be. We thought he was just spreading his wings, testing boundaries at age 11 and 12. All normal, not true?
Then he started in grade 7 this year. And his average fell with more than 20%. Not only that, some individual subjects he did atrocious. Normally, when something like this happens so quickly, on this scale, everyone would assume something terrible is wrong. No, not our school. Because not only did Mr N's marks fell, ALL the grade 7's marks fell. Most with an average of about 20%. So clearly it wasn't Mr N specific, or something that happened to only him, that could explain it. All the parents were up in arms and got very upset. The school pacified us and said oh, don't worry. All kids do badly in the first (of 4) exams in grade 7, because grade 7's curriculum is part of high school, so even though they're psysically still part of the primary school, they're treated as high school students. And this is a shock to the system, so their averages usually takes a dip, which recovers itself by the 2nd exam.
This didn't sit well with me. I'm extremely involved in my children's lives, and know exactly what they study, how the work looks, what it's about, etc. I had my own theories about what went wrong with MY child. Not the class, group or whatever. Just MY child. But the teachers all assured us we're worrying about nothing. Yeah right. Second exam came round, and 59% of the kids failed. Yes, read that again. 59% of the grade 7's failed their June exams. FAILED. Not struggled. Not fell behind or dipped in average. THEY FAILED. Almost 60% failed. How is that even POSSIBLE??????
This time, the parents were stinking, blinking mad. And what did the school do? They refused to listen to our rants. They organised an information evening where THEY told US what went wrong, why and what they're doing to fix it. Without EVER giving the parents a voice, or a chance to voice their grievances. They let the Department of Education came, who did a thorough investigation, and determined that the standard of our exams were a bit "too high", "too difficult", "too advanced", in some subjects. But that there's not really anything wrong. Not with the school, the general standard or the teachers.
So where did that leave us? Well, the school put some (really wonderful) steps in place which has made a difference already. For one, they employed another teacher so that instead of the 3 teachers for grade 7, there were now 4. Thus, 24 kids per class instead of the 32 they were during the first half of the year. They also spread the workload of the teachers. And all math classes had 2 teachers in the classroom. Though maths was the least of Mr N's worry. He still did exceptionally well in it. Unfortunately, a number of children were not as lucky, and maths was one of the subjects that needed urgent help the most. You can see why I thought my child's problem wasn't completely the same as everyone else's problem.
So what to do? We didn't know. We were scared, we felt lost, and very, very worried. What would happen with our boy in High school, grade 8, next year? Personally, I didn't believe it was just the standard of our current school's exams that were too high. Or the fact that the teachers were expecting too much from kids that were still just... kids. My theory goes much, much bigger than that.
When Apartheid was abolished, the government overhauled the whole education system. We had a fantastic education system for about 4 decades, but unfortunately it was mostly implemented in the so-called "white" schools. So I understood that the new government thought it best to overhaul the whole education system. Unfortunately, within 5 years, it was clear that the new system was failing. So again, a new system was designed. This system failed as well, though there were definite margins of improvement. So, they tried a third system. My children was taught this system, called OBE (outcome based education). Mr N was taught OBE in grades 1-4. I disliked OBE intensely. It was cumbersome, it failed to teach the basics as repeatedly as was necessary to instill a good foundation, and the workload was too much. It also relied heavily on teamwork between children, which was a drawback to someone like Mr N. He's extremely responsible, dilligent and respectful. He could not understand how or why children would act undisciplined in class, disrespectful towards the teacher or uninterested in doing their work. Trying to work in a team with such children caused him alot of frustration and marks worse than what he would've gotten on his own.
So when OBE was replaced, once again, with another education system, I was one of those that cheered hardest. Especially when we realised that the Department of Education has turned full circle, and has gone back to a system similar to the one used during Apartheid. There were less teamwork, and a little bit less tasks, projects and such (still way too much for my liking). The one BIG advantage of the new system, called CAPS, were that they reverted back to handbooks. Yay!!! The old OBE system allowed the teachers to decide by themselves, on an individual basis, which workbooks and notes they're implementing. Now, with CAPS, there's prescribed handbooks like in our days (when I were a child). The handbooks are the same all over the country, so that any child could move to any school, and be on the same standard at any stage during any given year. So even if you move halfway throughout the year, the work is the same, and done at the same tempo, so the child just falls in in the new school, without missing too much. The Department of Education has set prescriptions for every teacher. What must be done when, which term, how long to spend on what chapter, etc. They even prescribed what tests or assessments must be done, how much it counts, and so forth. Very limiting to the teachers, but great for standardizing. I loved it! I loved the promise of CAPS. I loved what it would mean for my children.
Until it was phased in.
Slowly, I realised that with all the good it brought with it, there was one huge disadvantage. The workload was doubled. From OBE that was already too much for little minds, CAPS was worse. Much, much worse. The subjects in grade 4 and 5 were reduced from 9 back to 6, which were FANTASTIC and probably the reason why Boeboe can still cope. She would NOT have coped with the grade 4 that Mr N had to cope with, writing 9 exams and studying 9 subjects' work. BUT, the workload per subject has increased with the new system, and especially from grade 7. It's an inhuman amount of work they have to memorise, study, work through. And from grade 7 it's back to 9 subjects again.
This workload can be seen in 2 areas. The one is the sheer amount of work that's covered per year, as well as at what age this workload is covered. For example, with OBE, the children only really started on their 2nd language in grade 2. Now, with CAPS, they start in grade 1 (age 6-7). Instead of starting to write letters in grade 1, they now do it in grade R. Money-word sums in maths is now part of the grade 1 curriculum (even though they can barely read!!).
Instead of for example have 100 facts about the emigration of the Khoi and San in Southern Africa in grade 5, they now study 200 facts about it in grade 4, and again 300 facts about this in grade 5 and then another 600 facts about it in grade 7!! It's just absolutely crazy, the amount of work they want the kids to get through.
My son has studied the same and more facts about economic management in grade 7 than what I had covered in grade 12. The experiments he does in natural sciences is the same now in grade 7, than what we did in grade 10 and 11. Why do they do this? And what's the advantages?
I don't know. Maybe it gets the kids used to much more work than what we had to face. Maybe it prepares them better for univarcity. Because in our day, only the top 5% or so went to univarcity. It was for the elite. Now, every 2nd child goes and studies a bachelors degree!! No wonder the country has a problem with good handy people. People that can do the physical work needed to run a successful country.
So CAPS is a sign of our times. Getting kids ready for a world that's crazy. Expecting so much from 18-year olds at univarcity, and getting them ready to make it in this tough economic world of ours. I get it, and I understand that it was necessary. I still don't think CAPS is all bad. Not at all. The good still overshadows the bad of it. I think it's a wonderful step in the right direction for our kids. BUT, it's still just a step, in my opinion. I don't think it's the end result just yet. Because they're going to realise that does not matter at what speed the world change and evolves and adapts, children stay children. Children needs time, love and play to grow. To learn. You just simply cannot expect the same from today's 10-year olds, than what you expected of the 15-year olds of 3 decades ago, just because you think it's necessary!! The 10-year olds of today still needs the same amount of playtime, moddycoddling, love, nurturing and emotional guidance than what they needed a hundred and a thousand years ago.
So it's fine to say times have changed, and adapt the curriculum to this. But keep in mind that you're working with children. Not static objects. And children needs to be children. They need time. Time to love. Time to learn. Time to play. Time to study. Time to participate. Time to wait. Time to be lazy. Time to relax. Time to read. Time to do nothing. Time. They need time. And taking all that time away from them, and expecting them to still grow normally... it's certain to fail.
This is just my opinion. And why I say the issue is much, much bigger than just my little boy that didn't do well in school because the standard was "a bit high". Much, much bigger. There's a lot more I can say about this. About countries all over the world that push, and countries that starts to realise that what we need, is to get back to raising children, and not raising a workforce when they're just babies still. But this post is already way too long.
So our solution? Well, we can't change the world. We can't change our country's drive to get back to the standard we had before Apartheid was abolished. We can't change our school system. We can't change our school. We just know that life should not BE like this. Life should not consist of studying day after day after day, for 5 weeks in a row, 4 times a year. Just to pass. Not when you're an above intelligent boy that should not have to study this hard. Life should not consist of a mom and dad's life revolving around exam times. We can't even visit friends for a coffee when it's exam time. We can't take an evening off where they just might get to bed too late, which might make them too tired to get the huge amount of facts into their heads the next morning. We can't even braai or do a family thing together for a Saturday lunch, because they have to study. The little ones have to walk on tiptoe, so as not to disturb the studying kids. There's no playtime really. Just small little breaks. They study, and study, and study. And I'm the one standing with a whip behind them, encouraging, summarising, quizzing and supporting and making sure they study. Because if I don't, if they don't, they FAIL. And what will happen when they fail? What future will they have when they can't even pass primary school?
Life should NOT be like this for primary school children. Life should NOT be like this at all. Not for us as parents either. Yes, small, short bursts of tests or exams are necessary and good. But 20 of the 52 weeks a year??? At age 10??? No way! I refuse to believe that this is normal nor acceptable!!
So what can we do about it? We can look at our children as individuals, list our options, and see which one fits them best. And that's precisely what we did. Our options were limited, pity. But for example, things we can do to get them educated are:
- Move to the country where the pace of life for children is much slower. (Not an acceptable option, since my husband's work is situated in the city only).
- Homeschool (only an option when all else fails - reasons I'll discuss in another post, since it's long)
- Homeschool centre (definately an option, but seemingly an extremely expensive option. In our currency, sounds like it could be anything around R3000-R6 000 per child!!!) That's 3-6x what we pay now!
- Another public school (an option, but will only fix a small part of the bigger problem). The children would still be unhappy due to the big number of children. They would still "dissapear" in the masses. They would still do CAPS. They would still be part of the bigger "system". Part of the bigger problem as I see it.
- Go talk to our current school's teachers/principle. (Not an option anymore, we've tried it multiple times already. With very limited success.)
- Stick to the school they are in currently, and hope for the best. Well, we've tried this for 3 terms now, and guess what? 8 of the 24 grade 7's in my son's school has, again, failed this term. Fortunately, Mr N isn't one of them. With ALOT of hard work (a huge chunk of that from my side!) he has risen in average with 10%, and did very well in some subjects. Really well.
So if all of the above options aren't really options, what can we do? Private schooling. It's the only solution I've researched, that seems like it might just be the answer to our prayers. Unfortunately though, we can't afford the expensive, big private schools. Not at all. So I never looked into this option until a friend of mine told me about a school close to our house that has gone through a few changes which made it an option for us. Financially, and in other ways. So here's the advantages (for OUR family, OUR kids) of this particular school:
- VERY small. Only about 90 kids at the moment, from grade 1-7. Next year, they start with grade 8, year after that grade 9, etc.
- Classes of about 10-12, though in some instances it can and will grow to about 20 kids. But still only one class per grade, maybe growing to 2. The grounds are too small to handle a school bigger than about 500. And that's from grade R-12!! So next year, Boeboe and Mr N will be about 1 of 10 kids in their class/grade, and Monkeyman 1 of about 20.
- Quality teachers
- In our hometongue, Afrikaans
- Supporting our religion and culture completely (huge advantage to us)
- Supporting children that needs that extra bit, because teachers have the time and knows what each child is capable of, if they understand the work or not, etc.
- No huge time constraints like in the bigger schools. Kinder to children who's slower, for example. Because they can. They have the time, because they deal with 10 kids, and not 150.
- They do their own curriculum in primary school, so no CAPS. And in high school, they do Cambridge International (from the UK). I need and want to say alot more about the subjects in CAPS, but this post is so long now, I'll leave it be for now. Maybe I'll get back to this.
There's more advantages, like all 3 children in one school, not far to drive, etc.etc. But those are kinda cherry on the cake advantages, not reasons to move your child to that school. The above is the major advantages to us.
It's been a really, really hard decision for us, and we've been thinking almost constantly about it for about 2-3 months now. So it's not taken lightly. We've spoken to the principle, the teachers, the owner of the school, some of the kids, etc. We've looked at it from different angles. We spoke to other parents whose kids were there, but who moved them out for various reasons to other schools. So we're trying to go into this with huge, open eyes. Still, it's scary. It's been a really difficult decision, and it consumed us. We've almost reached the point now where we believe this will be the right thing for our family.
Change, to me, is one of the most difficult things. I hate change. My eldest has been in his school for 8 years. Boeboe has been here for 6 of that 8. They've both only been in 2 schools. Their pre-school/playschool from ages 4-5, and then this current primary school. I don't do change well, not even for my children. They'll probably be fine, but for me, this is huge. This is really, really, really huge. If I hated their current school, maybe it might have been easier. But I still like them. I still think they're one of the best in the area. I still believe in them! But for my kids, we need something different. It took us a long, long time to realise this. That despite our children's good qualities, their dilligence, their intelligence, they're not coping in normal, big-city, mainstream school. So we're moving them. And it saddens me no end. Every day this week, I parked the car, and after 8 years of parking in the same few spots, I get tears in my eyes. I walk through the gates, I look at the flowers, the neat grounds, the little strawberries on the grounds, and I just want to cry. I really love their school. And it saddens me to move the kids. To know that Monkeyman won't move over to the "big" side where the grade 1-3's are. That he won't get to wear his brother's old school clothes that I packed away for him. That we'll never have a photo of him on the fridge next to his siblings, in that school's clothes. That we'll never get to see him play in the school's tennis team as we did Mr N. Ag man, I can just cry. I absolutely hate change. It's gonna take me a few months to get used to the new school. Until then, I'm gonna be a mess of sadness, indecision, worry and stress. There's a number of negatives of the new school, that's positives in our current school, that I'll have to accept. Like the anonymity of being one of thousands of parents. I can just dissapear. Suits me perfectly. Now, in the new school, I'll be one of about 160 parents. No chance to dissapear. Anyway, we'll make this work. And I know it'll be better. Anything will be better than the year we had. Children should still be children, and it seems that in this new school, that's exactly what they will be.
Sunday, August 31, 2014
It's been a quiet month
I do apologise for being so quiet, but not much was happening in which readers of this blog would be interested. We all had another throat infection, for example. :-)
There were just one interesting (and bad, for us) piece of news. We went to the dentist, and all 3 the oldest ones have jaw problems. Mr N has my severe overbite. I had to have reconstructive facial surgery age 19 because of it. He's going to the dentist again end of Sep, then we'll see where to go from there. Most likely we'll start orthodontics.
Boeboe has some misalignment. Not sure about the terms. But her lower jaw is placed towards the right. At this point, we're just keeping an eye on it, because she still has all her baby molars and eye teeth. No orthodontics can be done until there's permanent teeth they can latch it onto.
Monkeyman's jaw is the opposite of Mr N. His lower jaw is thrusted forward. So an underbite. The ENT said it would correct itself within a year now that the adenoids aren't blocking the flow of oxygen anymore. But it hasn't. For now, there's nothing we can do. He doesn't even have his 6-year old molars yet, so again, nothing they can latch the little "plate" he'll need, onto. Unfortunately, it's starting to influence his speech and habits, so we need speech therapy.
So let me give a bit of an update on each child, and then I'll finish the drafts of more interesting posts I'm busy with. Hopefully within the next week or so. I've been very busy with summarising again, since it's exams, and that has taken almost all of my free time.
Mr N
Where to begin. He's healthy, no problems there. Except that the one teacher advised us to take him for an EEG. Something I'm loath to do. I know, I know. I have to, I'm not being a good mother here. I'm just so so scared there will be abnormal activity again. :-(
Sometimes I really wonder, how can people accuse (yes, a few online "friends" have accused me) of looking for problems in my kids, when I'm procrastinating so much with every problem that comes up?? I honestly just don't get it. Like now with Mr N. A teacher told me to take him for an EEG, and I still haven't done it. Because like any normal mom out there, I'm soooo scared it'll show something. So as long as I don't take him, I can pretend all is still fine. And to be honest, I'm just SO VERY tired of doctors and appointments and driving to the hospital (a 20-min drive).
Anyway, so except for maybe a little suspected seizure activity, Mr N is doing okay. So why only OK, and why maybe seizure activity? Well, mostly because of school, and what's been happening there. It's gonna be a long discussion, so I'm busy finalising it in another post.
So Mr N. He's still my counter half. We talk about anything and everything. He's mature for his age, responsible, a good kid, very rule-abiding and disciplined. He's not conscientious, he has the smallest handwriting I've ever seen in any person, and he went through a difficult patch (part of the school story) with having no friends at school. Fortunately, via inadvertent intervention on the school's part, he's now in a different class and immediately made a great friend. So so happy for my boy!! It's been a very difficult year for him, and the way he handled it, makes me proud. He'll be fine, this one. Because he just walks the road without looking over his shoulder constantly, or let himself be distracted. He knows where he's going, and he's going there, no matter what.
Boeboe
Yeah, not sure what's news on her side. She's doing well. Still having a hiccup every now and then. With a tantrum, feeling sorry for herself or having a bit of an accident. I asked her if she wants to go back to the dr and now try the meds for the bladder, and she said yes, please. So again, I need to make another appointment, and I'm procrastinating. She's turning 11 soon, and also needs her checkup with the neurosurgeon, and this time it should include an MRI, he said. Again, I'm not tackling it. Yet. Makes me feel bad. But the past 2 months we've just concentrated on being a normal family, having healthy kids, and making sure that their emotional needs are met for a change, and not just the physical needs. It's been so good! They're happier and more contend. I'm loath to spoil it by taking them all to numerous doctor appointments again. :-(
Apart from the few hiccups, it's going well with Boeboe. She still studies her butt off. She does her homework, mostly without complaint. She's the most tenacious child ever. It's amazing, when I look at her good and bad qualities. It forms such a strong picture. Stubborn (not the stubbornness that all parents complain about when their child is 3). She's really, really stubborn. Like a bulldog that has bitten down. She WILL NOT LET GO. She will go on. And on. And on. And on. And on....
So add the stubbornness, with the tenaciousness (is there such a word?), with being conscientious, hard-working, demanding, fair, difficult, insistent, tiresome, obstinate, persistent, strong-willed, inflexible, determined, unyielding, kind, sweet, empathic, motherly and you'll get a picture of my little girl. Her qualities are so clear, so defined, so formed. It amazes me, how one small little body can contain so much steel, so much force, so much kindness towards the "underdog". She will wipe the earth in her anger, but show her a baby bird or gecko, and she'll completely melt. She'll fight for anyone she perceives needs her help, as hard as she fights for herself. Other 10-year old's doesn't even yet know what fighting for one's rights is about. She can be tiring, though. Always a force to be dealt with. Always the strong wind that blows through the house. Never quiet, never leaves anyone untouched in her wake. You don't get to relax and de-stress with her around!! The unexpectedness and repetitive nature of her blow-outs keeps us on our toes. :-) But her kindness, her sweetness, her love for those around her, always restores the balance again in our home. It's astonishing how she can hide the force of her whole personality so well, when she's at school. Yes, she's a little bit less stoic this year, since being on the meds. A bit less shy. And after a very sad first 6 months with no friends and other children shunning her, she has found 2 good friends. And it makes her so happy! When she's happy, I'm happy!! :-)
Our Monkeyman
Ai man, this is the most difficult of the 4 to write. I'm so sad for him. I just want to break down and cry. This isn't how life should be!! But let's start at the good things. Academically, he's excelling. Our smart little boy. He LOVES the "work" of grade R! He loves maths, he loves doing little tests and worksheets. He loves learning! He can't wait to tell me every day what they were taught that morning. He retains allot of the info for months, so he clearly listens very well in class. He's the assistant-teacher's little sweetheart, seems like they have a special bond. And the teacher is so proud of him, she boasts to everyone. :-) Makes this mom's heart very happy!
Socially. Oh wow, the difference is amazing. From where he was at age 4. How he has improved with leaps and bounds from the shy little thing that would stuck his head under my arm or behind my leg whenever any child just dared to so much as look at him! Now he has friends!! Loads of them! He's one of the popular little boys. Amazing. It's so sweet and heartwarming. Our shy, kind, sweet little boy that has find himself. He's happy at school, and it makes me so grateful that we took the time and effort to settle him when he was 4 and 5. Even though it was so tiring, so difficult at times, but we worked hard and it has paid off. I have to go and visit his teacher of last year, and tell her how much her hard work has helped and how grateful we are.
So health wise. Yes, the one area that's difficult to write about. I don't know why, I should've known better, but I've set myself up for disappointment. I think part of it was when the online friends I spoke about earlier, accused me of looking for something wrong when there wasn't... I wanted to just stop it all. I wanted to let it go and believe our little Monkey is just fine. That I'm the bad person those few people accused me of, that I'm psychotic. I think I needed to believe that they were right, because the alternative would mean that like the doctors think, there's something really wrong with our family. It was easier to think those "friends" were right. That I'm a bit crazy up there, and for some reason enjoy making stories up or something similar. Unfortunately, they were the ones that were wrong. Oh, how I wish it was me!
What happened was that Monkeyman was at home for about 6 weeks in total (not going to school). Because of the flu, then school holidays, then the mumps. During those 6 weeks, his skin tone improved immensely. He started to look healthy, with a normal rosy glow to his cheeks, pink colour in his lips, a shine in his eyes. The circles under his eyes disappeared, the little blue vein on the side of his mouth was mostly light. His hunched shoulders straightened out, his feet wasn't dragged everywhere, rather he skipped and jumped and ran around, like other 6-year olds. He stopped sighing, he woke up without looking like a child that only slept for 3 hours at night instead of the 10 he really did. He didn't yawn all the time. He didn't rest his heavy head on his hand while sitting at the table, eating. He didn't refuse to play with his siblings because he wanted to lie down and rest. He didn't complain when we needed to go anywhere "because he's too tired". He was just a happy, normal, healthy little boy with excellent colour in his face!
So based on all that happened, I convinced myself it wasn't because he was at home resting for 6 weeks. But that somehow the fact that he was on higher doses for his GERD (reflux disease) because he aspirated it, has now also helped for his tiredness. Because since June, he has been on medication twice a day, instead of just once. I told myself that maybe the GERD caused him to not have a good night's rest, and now that he's on higher doses, he's able to sleep well, wake up rested and that's why all the tell-tale signs has mostly disappeared.
Then he started school again.
It wasn't even one day. Not even ONE day. How could that be? How could EVERYTHING be destroyed in ONE day, like that? All my hopes, all my happiness, the good posture, the good colour tone, the shine in his eyes, everything. Gone. In one single day. I was done. It broke me. I really, really struggled to get up from that blow.
He was back to his normal. Pale, even the lips. Hunched shoulders. Sighing in the voice. Dragging the feet. Refusing to play with his siblings because he "needs to rest a bit". Within a few days, the circles under his eyes were back. The complaining were back. The hooded eyes. The head-that's-too-heavy. Everything.
I know some of you would think "maybe it's the school". Well, in a way you are right. But it's not this particular school. It's also not this particular teacher or children or setup. It's just everything. Him trying to be like the other kids. He can't. He can't keep up with them (he voices this). I'll get into all of this in another post I'm busy with, where I'm trying to answer all the questions people have. I'll also talk about homeschooling there. And why, despite this clear evidence that school's too much for him, I'm not contemplating it, yet.
So where are we in the process of trying to find the cause of this mysterious tiredness that's clearly brought on by physical assertion? There's one mitochondrial specialist where we stay. And she's so good, that the pulmonologist don't want us to find another one that's further away, but less busy. But, because she's just one, and very good, she's overwhelmed by the number of patients she needs to see. She covers both state and private patients. Unfortunately, there's no way she can fit us in as a private patient until next year. So we decided to go the state route. Her office promised to phone our doctor, the pulmonologist, the moment they have an opening to fit him in. So far, they haven't. The pulmonologist promised to follow it up during last week, again.
So that's where we stand with Monkeyman. And the reason I was quite despondent, and so sad. But, I've moved on. Accepted it, and picked up the pieces. We'll just shoulder on in this journey, still trying to be positive that we'll have some answers before grade 1. Because if he can barely cope with grade R, I really don't know how he'll cope with grade 1. But let's not put the cart before the wheels just yet.
Peanut
My baby. My sweet little one. She's such a sweetheart. Oh, she has her moments, believe me! She's 2, after all. She has this piercing scream to let everyone know that they're now not following the rules in her little head. :-) We try to teach her not to scream like that, because honestly, it hurts our ears! But I get it, when you're just 2 feet tall, and someone that's 4 feet tall takes a toy out of your hand, what are you suppose to do? She doesn't lash out in anger, which I'm grateful for. She just screams! LOL. Apart from that, she's really just the sweetest little one around. She loves hugs. She loves sitting on our laps. She loves her siblings. No, she adores her siblings. They're everything in her little world. She are soooo happy when they play with her. Boeboe is still her second mom. The one that makes her tea, kisses her hurts better and reads stories to her. Mr N is her hero, the one that tickles and chases her around, while she giggles her head off. And Monkeyman is her playmate. The one she bickers with, the one that takes the toys out of her hands, and the one that plays cars and puzzles with her. The one she relates to on the same level.
She's shy. But a more "normal" shy than what the others had. Not a social awkwardness shyness. Just a "who are this new person mommy?" shyness. She'll go and play out of my sight without problems. Even in new areas. And she talks! Gosh, this kid is amazing. She says so many sentences and words. She even counts in 2 languages! Love it. :-) She also seems to be able to grasp maths. She can add up to 3 objects to each other, or subtract them. She's not good with her colours. Somehow, she just struggles allot with this. I hope she's not colourblind! LOL, I'm sure she's fine, she just hasn't made that connection yet.
She has beautiful hair. Still very fine, and it still tangles easily. It doesn't curl even half as much as Boeboe's did. Pity. I loved Boeboe's curls. She has beautiful dark eyes, just like her siblings. With loooong lashes. She has a gorgeous smile, and because it's a bit rare, when she does smile or laugh, it just lights up our world. She's very attached to both mommy and daddy. Oh, how she adores her father. When he comes home from work, she would run to hug him. And then proudly comes to tell me that daddy's home and that she hugged him. So sweet.
She's still short. Poor thing, I guess she got her mom's length. Pity. Her legs have straighten a bit, fortunately. The pead said it has to, by age 2. She hasn't started potty-training, and I'm not planning to, any time soon. She shows absolutely zero signs of being ready, and with the history of ALL my other kids that were only ready after age 3, I'm in no hurry at all. She doesn't sleep through. Not at all. She wakes up around 3 or 4 times a night. Sometimes more. Fortunately, like the others, she loves to sleep late at this age. Most mornings, we wake up around 9am. She doesn't take a regular day nap. Only about twice a week, she will come and sit on my lap, suck her dummy and fall asleep. Really cute. But on those days, she stays up very late in the evening, so I don't force her to take the nap during the day, if she doesn't want to.
So that's the kids, for now. I'm working on a post about the school issues, and a post about all the questions people have asked me about our health issues. Once there's a bit more time again, I'll try to finalise those.
There were just one interesting (and bad, for us) piece of news. We went to the dentist, and all 3 the oldest ones have jaw problems. Mr N has my severe overbite. I had to have reconstructive facial surgery age 19 because of it. He's going to the dentist again end of Sep, then we'll see where to go from there. Most likely we'll start orthodontics.
Boeboe has some misalignment. Not sure about the terms. But her lower jaw is placed towards the right. At this point, we're just keeping an eye on it, because she still has all her baby molars and eye teeth. No orthodontics can be done until there's permanent teeth they can latch it onto.
Monkeyman's jaw is the opposite of Mr N. His lower jaw is thrusted forward. So an underbite. The ENT said it would correct itself within a year now that the adenoids aren't blocking the flow of oxygen anymore. But it hasn't. For now, there's nothing we can do. He doesn't even have his 6-year old molars yet, so again, nothing they can latch the little "plate" he'll need, onto. Unfortunately, it's starting to influence his speech and habits, so we need speech therapy.
So let me give a bit of an update on each child, and then I'll finish the drafts of more interesting posts I'm busy with. Hopefully within the next week or so. I've been very busy with summarising again, since it's exams, and that has taken almost all of my free time.
Mr N
Where to begin. He's healthy, no problems there. Except that the one teacher advised us to take him for an EEG. Something I'm loath to do. I know, I know. I have to, I'm not being a good mother here. I'm just so so scared there will be abnormal activity again. :-(
Sometimes I really wonder, how can people accuse (yes, a few online "friends" have accused me) of looking for problems in my kids, when I'm procrastinating so much with every problem that comes up?? I honestly just don't get it. Like now with Mr N. A teacher told me to take him for an EEG, and I still haven't done it. Because like any normal mom out there, I'm soooo scared it'll show something. So as long as I don't take him, I can pretend all is still fine. And to be honest, I'm just SO VERY tired of doctors and appointments and driving to the hospital (a 20-min drive).
Anyway, so except for maybe a little suspected seizure activity, Mr N is doing okay. So why only OK, and why maybe seizure activity? Well, mostly because of school, and what's been happening there. It's gonna be a long discussion, so I'm busy finalising it in another post.
So Mr N. He's still my counter half. We talk about anything and everything. He's mature for his age, responsible, a good kid, very rule-abiding and disciplined. He's not conscientious, he has the smallest handwriting I've ever seen in any person, and he went through a difficult patch (part of the school story) with having no friends at school. Fortunately, via inadvertent intervention on the school's part, he's now in a different class and immediately made a great friend. So so happy for my boy!! It's been a very difficult year for him, and the way he handled it, makes me proud. He'll be fine, this one. Because he just walks the road without looking over his shoulder constantly, or let himself be distracted. He knows where he's going, and he's going there, no matter what.
Boeboe
Yeah, not sure what's news on her side. She's doing well. Still having a hiccup every now and then. With a tantrum, feeling sorry for herself or having a bit of an accident. I asked her if she wants to go back to the dr and now try the meds for the bladder, and she said yes, please. So again, I need to make another appointment, and I'm procrastinating. She's turning 11 soon, and also needs her checkup with the neurosurgeon, and this time it should include an MRI, he said. Again, I'm not tackling it. Yet. Makes me feel bad. But the past 2 months we've just concentrated on being a normal family, having healthy kids, and making sure that their emotional needs are met for a change, and not just the physical needs. It's been so good! They're happier and more contend. I'm loath to spoil it by taking them all to numerous doctor appointments again. :-(
Apart from the few hiccups, it's going well with Boeboe. She still studies her butt off. She does her homework, mostly without complaint. She's the most tenacious child ever. It's amazing, when I look at her good and bad qualities. It forms such a strong picture. Stubborn (not the stubbornness that all parents complain about when their child is 3). She's really, really stubborn. Like a bulldog that has bitten down. She WILL NOT LET GO. She will go on. And on. And on. And on. And on....
So add the stubbornness, with the tenaciousness (is there such a word?), with being conscientious, hard-working, demanding, fair, difficult, insistent, tiresome, obstinate, persistent, strong-willed, inflexible, determined, unyielding, kind, sweet, empathic, motherly and you'll get a picture of my little girl. Her qualities are so clear, so defined, so formed. It amazes me, how one small little body can contain so much steel, so much force, so much kindness towards the "underdog". She will wipe the earth in her anger, but show her a baby bird or gecko, and she'll completely melt. She'll fight for anyone she perceives needs her help, as hard as she fights for herself. Other 10-year old's doesn't even yet know what fighting for one's rights is about. She can be tiring, though. Always a force to be dealt with. Always the strong wind that blows through the house. Never quiet, never leaves anyone untouched in her wake. You don't get to relax and de-stress with her around!! The unexpectedness and repetitive nature of her blow-outs keeps us on our toes. :-) But her kindness, her sweetness, her love for those around her, always restores the balance again in our home. It's astonishing how she can hide the force of her whole personality so well, when she's at school. Yes, she's a little bit less stoic this year, since being on the meds. A bit less shy. And after a very sad first 6 months with no friends and other children shunning her, she has found 2 good friends. And it makes her so happy! When she's happy, I'm happy!! :-)
Our Monkeyman
Ai man, this is the most difficult of the 4 to write. I'm so sad for him. I just want to break down and cry. This isn't how life should be!! But let's start at the good things. Academically, he's excelling. Our smart little boy. He LOVES the "work" of grade R! He loves maths, he loves doing little tests and worksheets. He loves learning! He can't wait to tell me every day what they were taught that morning. He retains allot of the info for months, so he clearly listens very well in class. He's the assistant-teacher's little sweetheart, seems like they have a special bond. And the teacher is so proud of him, she boasts to everyone. :-) Makes this mom's heart very happy!
Socially. Oh wow, the difference is amazing. From where he was at age 4. How he has improved with leaps and bounds from the shy little thing that would stuck his head under my arm or behind my leg whenever any child just dared to so much as look at him! Now he has friends!! Loads of them! He's one of the popular little boys. Amazing. It's so sweet and heartwarming. Our shy, kind, sweet little boy that has find himself. He's happy at school, and it makes me so grateful that we took the time and effort to settle him when he was 4 and 5. Even though it was so tiring, so difficult at times, but we worked hard and it has paid off. I have to go and visit his teacher of last year, and tell her how much her hard work has helped and how grateful we are.
So health wise. Yes, the one area that's difficult to write about. I don't know why, I should've known better, but I've set myself up for disappointment. I think part of it was when the online friends I spoke about earlier, accused me of looking for something wrong when there wasn't... I wanted to just stop it all. I wanted to let it go and believe our little Monkey is just fine. That I'm the bad person those few people accused me of, that I'm psychotic. I think I needed to believe that they were right, because the alternative would mean that like the doctors think, there's something really wrong with our family. It was easier to think those "friends" were right. That I'm a bit crazy up there, and for some reason enjoy making stories up or something similar. Unfortunately, they were the ones that were wrong. Oh, how I wish it was me!
What happened was that Monkeyman was at home for about 6 weeks in total (not going to school). Because of the flu, then school holidays, then the mumps. During those 6 weeks, his skin tone improved immensely. He started to look healthy, with a normal rosy glow to his cheeks, pink colour in his lips, a shine in his eyes. The circles under his eyes disappeared, the little blue vein on the side of his mouth was mostly light. His hunched shoulders straightened out, his feet wasn't dragged everywhere, rather he skipped and jumped and ran around, like other 6-year olds. He stopped sighing, he woke up without looking like a child that only slept for 3 hours at night instead of the 10 he really did. He didn't yawn all the time. He didn't rest his heavy head on his hand while sitting at the table, eating. He didn't refuse to play with his siblings because he wanted to lie down and rest. He didn't complain when we needed to go anywhere "because he's too tired". He was just a happy, normal, healthy little boy with excellent colour in his face!
So based on all that happened, I convinced myself it wasn't because he was at home resting for 6 weeks. But that somehow the fact that he was on higher doses for his GERD (reflux disease) because he aspirated it, has now also helped for his tiredness. Because since June, he has been on medication twice a day, instead of just once. I told myself that maybe the GERD caused him to not have a good night's rest, and now that he's on higher doses, he's able to sleep well, wake up rested and that's why all the tell-tale signs has mostly disappeared.
Then he started school again.
It wasn't even one day. Not even ONE day. How could that be? How could EVERYTHING be destroyed in ONE day, like that? All my hopes, all my happiness, the good posture, the good colour tone, the shine in his eyes, everything. Gone. In one single day. I was done. It broke me. I really, really struggled to get up from that blow.
He was back to his normal. Pale, even the lips. Hunched shoulders. Sighing in the voice. Dragging the feet. Refusing to play with his siblings because he "needs to rest a bit". Within a few days, the circles under his eyes were back. The complaining were back. The hooded eyes. The head-that's-too-heavy. Everything.
I know some of you would think "maybe it's the school". Well, in a way you are right. But it's not this particular school. It's also not this particular teacher or children or setup. It's just everything. Him trying to be like the other kids. He can't. He can't keep up with them (he voices this). I'll get into all of this in another post I'm busy with, where I'm trying to answer all the questions people have. I'll also talk about homeschooling there. And why, despite this clear evidence that school's too much for him, I'm not contemplating it, yet.
So where are we in the process of trying to find the cause of this mysterious tiredness that's clearly brought on by physical assertion? There's one mitochondrial specialist where we stay. And she's so good, that the pulmonologist don't want us to find another one that's further away, but less busy. But, because she's just one, and very good, she's overwhelmed by the number of patients she needs to see. She covers both state and private patients. Unfortunately, there's no way she can fit us in as a private patient until next year. So we decided to go the state route. Her office promised to phone our doctor, the pulmonologist, the moment they have an opening to fit him in. So far, they haven't. The pulmonologist promised to follow it up during last week, again.
So that's where we stand with Monkeyman. And the reason I was quite despondent, and so sad. But, I've moved on. Accepted it, and picked up the pieces. We'll just shoulder on in this journey, still trying to be positive that we'll have some answers before grade 1. Because if he can barely cope with grade R, I really don't know how he'll cope with grade 1. But let's not put the cart before the wheels just yet.
Peanut
My baby. My sweet little one. She's such a sweetheart. Oh, she has her moments, believe me! She's 2, after all. She has this piercing scream to let everyone know that they're now not following the rules in her little head. :-) We try to teach her not to scream like that, because honestly, it hurts our ears! But I get it, when you're just 2 feet tall, and someone that's 4 feet tall takes a toy out of your hand, what are you suppose to do? She doesn't lash out in anger, which I'm grateful for. She just screams! LOL. Apart from that, she's really just the sweetest little one around. She loves hugs. She loves sitting on our laps. She loves her siblings. No, she adores her siblings. They're everything in her little world. She are soooo happy when they play with her. Boeboe is still her second mom. The one that makes her tea, kisses her hurts better and reads stories to her. Mr N is her hero, the one that tickles and chases her around, while she giggles her head off. And Monkeyman is her playmate. The one she bickers with, the one that takes the toys out of her hands, and the one that plays cars and puzzles with her. The one she relates to on the same level.
She's shy. But a more "normal" shy than what the others had. Not a social awkwardness shyness. Just a "who are this new person mommy?" shyness. She'll go and play out of my sight without problems. Even in new areas. And she talks! Gosh, this kid is amazing. She says so many sentences and words. She even counts in 2 languages! Love it. :-) She also seems to be able to grasp maths. She can add up to 3 objects to each other, or subtract them. She's not good with her colours. Somehow, she just struggles allot with this. I hope she's not colourblind! LOL, I'm sure she's fine, she just hasn't made that connection yet.
She has beautiful hair. Still very fine, and it still tangles easily. It doesn't curl even half as much as Boeboe's did. Pity. I loved Boeboe's curls. She has beautiful dark eyes, just like her siblings. With loooong lashes. She has a gorgeous smile, and because it's a bit rare, when she does smile or laugh, it just lights up our world. She's very attached to both mommy and daddy. Oh, how she adores her father. When he comes home from work, she would run to hug him. And then proudly comes to tell me that daddy's home and that she hugged him. So sweet.
She's still short. Poor thing, I guess she got her mom's length. Pity. Her legs have straighten a bit, fortunately. The pead said it has to, by age 2. She hasn't started potty-training, and I'm not planning to, any time soon. She shows absolutely zero signs of being ready, and with the history of ALL my other kids that were only ready after age 3, I'm in no hurry at all. She doesn't sleep through. Not at all. She wakes up around 3 or 4 times a night. Sometimes more. Fortunately, like the others, she loves to sleep late at this age. Most mornings, we wake up around 9am. She doesn't take a regular day nap. Only about twice a week, she will come and sit on my lap, suck her dummy and fall asleep. Really cute. But on those days, she stays up very late in the evening, so I don't force her to take the nap during the day, if she doesn't want to.
So that's the kids, for now. I'm working on a post about the school issues, and a post about all the questions people have asked me about our health issues. Once there's a bit more time again, I'll try to finalise those.
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