A month. I cannot believe it's been more than a month. 5 days and we see the neurosurgeon for Boeboe's 6-week check-up. That's the point where/when I'll believe that this is Boeboe's new normal. Until then, we're just being caustically optimistic that Boeboe's improvements are here to stay. On that day, I'll believe it and be truly happy. Almost there. Almost.
What a few weeks it's been. Boeboe only had one bad day. JUST ONE BAD DAY. WOW. Pity about that bad day though. It caught me off guard and threw me for a loop. It disheartened and saddened me, sigh. I so wish we could just go on as if she never, ever had this problem in the first place. Instead, we need to celebrate the wonderfully good days, and live through the few remaining bad days.
She still does not ever wet the bed anymore. 5 Weeks of completely dry nights. The psychologist said there is absolutely no way that it's all in the mind. The cord had to have been tethered for it to have this amazing physical effect. And the day time accidents had a wonderful respite of 9 days! Then the one bad day where there was 1 accident. And then, again so far, another 7 good, accident-free days. The bad day also saw some of the constipation with encopresis. Meaning, soft pooh passes the hardened impaction (constipation) and spills out into the underwear. Nothing as bad as it was before, she still feels it coming and run. The underwear is just smeared. So still an improvement. And after a suppository, the tummy worked beautifully and we're back to having good days! Unfortunately, we're back to 3 t-spoons of laxette daily for the constipation...:( Pity. She hates the taste of it so much. But as long as it means pooh-accident-free days...who minds?
So all in all, we're still doing extremely good. If we can continue another 5 days like this, I'm going to accept this as her new normal, and work with that. I'll give her another 3 months to chart how much accidents we still have left. If it's enough for her to want to do something about it, I'll ask the pead or urologist for a prescription for the meds (calming the bladder) and try that again. If it doesn't work, I'll take her to the urologist for another round of botox. In the meantime, I LOVE not having to buy nappies weekly! It cost us SO much. Now, I just have to keep on buying nappies for Monkeyman for night time. He's not potty trained at night just yet. He drinks about a liter of fluid every night!!! But NO MORE NAPPIES FOR BOEBOE! YAY!!!!! She's sooooo happy to be like other girls now. She doesn't have accidents at school, and she doesn't need to worry much about it even!!!
We had one rough afternoon last week. When I took Boeboe to her psychologist, she told me that we should think about doing IQ tests with Boeboe because she struggles so much with her homework. :( That's sad. After talking to dh, we both agreed, since it would give us a baseline to measure her growth from now on. She's also going to do some more tests with Boeboe, to see if she can pickup anything else that's up with her. I'll elaborate more on this once we have more detail (towards June). Boeboe's teacher needs us to work harder on Boeboe's maths, since she's now very behind. But I've really concentrate on it this week, and she's made a marked improvement! So there's definitely hope.
We also need to work harder on the reading, but just do not get time! It takes her about 2 hours every day to finish the daily homework. Between that, school and after school activities, the poor child has NO rest. And being only 5-weeks post-op, I feel it's really really unfair so I do not push for anything more, except the maths. She needs to recover from major surgery still! Homework is NOT the most important thing just yet. We'll do some catch-up during the June holidays. And if that means she gets poor marks for this second term, so be it. Her recovery comes first, imo. At least until the 6-week post-op mark.
She also got an oral speech of almost 2 minutes she had to do this week. Get this...the topic was "Is good manners still important in school?" WHAT??? This is 2nd grade...7-year olds, and it's in their SECOND language!!!! (For our overseas readers....her first language is Afrikaans. Our home tongue.) Gosh, she can't even READ English properly, now she had to SPEECH it? I was so upset. But, she did BEAUTIFULLY! Lots of very hard work, but she got it right!! Yay!!! I was immensely proud, and it gave me LOTS of hope and positivity for the future.
The psychologist and pediatrician discussed Boeboe with each other, and accordingly to the psychologist the paediatrician also recommends taking Boeboe to a geneticist. :( I need to make work of this in the coming week. So they (still) suspect that all of this may be due to some bigger genetic defect. So far, I wasn't able to get hold of the geneticist.
This morning Boeboe saw the speech therapist. On Tuesday, we're getting the parental feedback. I'm quite anxious about this, because according to the occupational therapist, Boeboe had huge deficits in understanding of language. Sounded like she may have a processing problem in the brain. This would be very very bad, of course. So I'm on pins and needles to get the results. After that, towards the end of the month, the psychologist is doing the IQ tests. It'll be 2 days, both mornings. The one day she's taking off school the whole day, while the 2nd morning she'll only be off school for about 2 hours. Unfortunately, we have to wait for the results until 7 June. :( Still so far away!
Apart from all of this, it's going well with Boeboe. She rarely complains of pain anymore. If she does, it's more like just a twinge, so I don't give medication. Her first week back at school went without any hiccups. She was tired when I fetched her at 10am (after almost 3 hours there), but she coped well. From last week, she's been back at school full time and taking it extremely well. She had to miss out on a marathon at school though. I refused that she could participate, her teacher totally agreed fortunately. So Boeboe had to sit on the sideline, watching her friends have all the fun. Pity. And sometimes kids would push or shove her on her back, which hurts. Once a boy sitting behind her on the carpet kicked her in the back. :( Broke my heart to hear how painful it was for her.
In any case, physically, Boeboe is doing beautifully. The wound has healed over really well. Just a little bit of swelling left. I'll post some pics later during the weekend. Emotionally, she's doing better. She kept on asking the why me questions for a while, wishing she didn't need surgery at all. But her psychologist is working really hard with her to work through her trauma and emotions. She's worth gold to us, the psychologist. Costing us a pretty penny, but really worth every cent.
I'm a little bit worried about Monkeyman these days. He lies down more again. Maybe it's winter? I don't know. But it's not normal for a 3-year old to lie down after 30 minutes of play, watching his sister and brother continuing play. I don't know. Maybe it's just his personality, but it just doesn't sound right. It doesn't look right. But what must I do? He's been for a check-up and blood tests, and everything was fine.
Mr N is doing well. He's doing good in school. And for the first time since grade R, he has VERY good friends. He's always had friends. But they chopped and changed like a set of clothes. Worn today, discarded tomorrow. It was as if he just couldn't find that friend he was looking for. Now, this year, he has 2 very good, constant friends. It makes him (and me!) soooo happy. The one is actually the very good friend he had all of his grade R. It makes me so mad, this policy of the school to split friends up every year. The teachers go out of their way, to put children in different classes for the next year. WHY? I don't get it. They say it teaches them socialisation and how to adapt and conform and make new friends. It build skills accordingly to them. Accordingly to me, that may happen to extroverts. But to introverts...it breaks their hearts, makes them even more shy, and isolates them. It is SAD. Anyway, Boeboe still plays with her friend from last year (they've also been split, but they meet each other break time outside the classes) and Mr N now made good friends this year, at long last. So I'm so happy about this. And even Monkeyman has a best little friend (my friend's 3-year old).
No comments:
Post a Comment