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.