Holiday!!!

I'm such a bad blogger! I've been quiet for 3 weeks!!

My excuse: The exam!

I worked soooo hard with Mr N for his exam. I can't believe how much time it takes. For the mother. I have absolutely no idea how a working mommy can cope with the kids' workloads! I had to constantly work with Mr N. Send him to study, then he comes out after 30 minutes all excited "Mommy, I'm done!". Then I question him (which takes anything between 30 to 60 minutes!!!!). Only to realise (to Mr N's horror) that after reading 3 times through your work, you only remembers about 20% of it...hahahaha. Then, sending Mr N back. After another 20 minutes he'll come running out exclaiming that THIS time he knows it. After spending another 30 minutes on questioning him, I send him back. Because lo and behold, he only knows 40% of the work. Hahahahaha. Poor boy. So as you can imagine, it took quite a huge chunk of my time questioning him until he knew it 100%. And multiply that for 9 subjects, and you know what I've done with the month of June!

So yes, it took me hours and hours and hours of questioning Mr N, to help him understand the work and realise what he knows, and what needs more studying. The poor thing really, really, really worked SO hard. Studying every day for 4 weeks! It paid off though. He still hasn't received his rapport (only after the holiday), but so far he has received 93%, 87% and 77%. I'm very chuffed with him. So proud. And he was pleased as a kitten with a plate of milk after he received his marks. Even, or maybe especially, the 77%. Because that's the most difficult, most non-sensical subject you can imagine (economic managing science). And all the kids did quite badly. Mr N's mark was only 3 points lower than the child that did best in his class. So we were quite relieved that he still got such a good mark for it. I was dreading it, because after he wrote, he told me that he mixed 2 questions up. One was 6 marks, and one was 5 marks. That's 11 out of the 30!!!

I just don't know if it's worth pushing Mr N so much. I think next term I'm gonna work more playtime into his schedule, and one day off for every week's studying. It's just impossible to keep going like he did. Although, he LOVED getting those good marks! Right up there with the best in the class, and with his (quite intelligent) 2 best friends! He would've felt so bad if they all did well, and he not.

About Boeboe: Yes, it's going well. Extremely well...:) We had one bad hiccup. She woke me up around 2 months after the operation, one night at 3am. Mommy, I wet the bed. After settling her, I laid awake for 2 hours. Unable to sleep. It was just such a big letdown. Such a worry. But, since then (about 2 weeks now) she's been dry again at night. So I'm breathing again. I just can't describe the mix of emotions I went through. The range of the what-ifs. The psychologist tried to assure me, that this really is it. That I shouldn't despair so much after a hiccup. That I should not fear like I do, every day. That I must accept the results now. But man oh man oh man. We've had soooooo many times that we were disappointed. Living life a certain way for 4 years. It's difficult to shift your mind after 2 months. Sometimes I think I'm gonna wake up, and realise the operation was just a dream. The dream I had of doing it for 18 months. Of finding THE dr that can do it. That will do it. So many, many, many nights I've researched tethered cord until 1am in the mornings. Dreading, but praying, for an untethering operation. I wanted it with every fibre of my being. But I was sooooo scared that my research has diagnosed my daughter. And that I was wrong. What would I have told my husband if I was wrong. When the dr told us directly after the operation that he couldn't cut the filum....that the operation failed...I died a thousand deaths. And I was just thinking....how do I look her and her daddy in the eye. Telling them that I was wrong. Wrong for researching this. Wrong for believing this. Wrong for pushing for this. I've never felt so awful in my life. And then, 4 days later we hear the words that the cord WAS indeed tethered. I'm still too scared to believe that!!! 2 Months down the line and I still cannot believe it. It's too amazing. I so so so so so wish the video machine in the theatre wasn't broken. I would've really loved seeing what happened in that theatre. But maybe, a Higher Hand caused the video machine to break. Maybe, there's some things we're not allowed to see. Not allowed to know. Maybe sometimes....we just need faith.

So yes, except for 1 hiccup with the constipation and encopresis, and 1 hiccup with the needles and pins, and 1 hiccup with the nighttime accident...she's doing so well. Still having 1 daytime accident about once every week or 2 weeks. So about 2-3 times a month. We're entering the 3rd month now, so let's see how it goes. Usually, 3 months is sort of the cut-off point for the most improvements after the untethering operation.

Sometimes, I close my eyes, and I'm just so surprised at how life is turning out. It's so good. So wonderful. I want to grab hold of it and just hold on tightly. Why did Boeboe have to have the tethered cord? I don't know. Such a rare, rare, rare thing to have. Probably one of a handful of people in our whole country to have an occult tethered cord. Why she? And then, I think of how amazing her road has been. In our search for answers. For help. And then, to land up at dr L. Do you know what's sad to me? Last year March, we were referred by the pead to go and see a neurosurgeon. She phoned me. I remember sitting in my car in the children's school's parking lot. Waiting for the bell to ring. I was reading the "Vrouekeur" (a magazine in our country). The pead phoned and told me to go see one of the following 3 surgeons. Dr M, Dr L and another. I wrote them all down on my magazine. On the page I was reading. Staring at them. Then I went to fetch Boeboe from her class (in grade 1 you have to fetch them from the teacher). When we climbed back into the car, Boeboe asked me why I was so preoccupied. I picked the magazine up and showed her the 3 names. I said that her doctor phoned me, and that she thinks one of these doctors may be able to help us. Boeboe looked at the names and said, "Mommy, let's go to that one". And she pointed to Dr M.

Dr M turned out to be the wrong choice. How much time have we wasted? How many many months. At least 6. We should've gone to Dr L then already. I wonder how it would've panned out. Have we made a different choice that day in the car. And you know why Boeboe chose dr M? Because his surname started with the same letter her name starts with. At age 6, that's what attracted her to his name. :(

In the end though, I do believe we walk the path we had to walk. And we had a good ending, so I'm not really bitter about anything. Looking at my daughter, I sometimes marvel at how very very far we've come. With all the medical visits. All the pain. All the embarrassment. All the frustration.

We're also almost done with the psychologist!!! Just one more appointment, after school started again, so that she can just touch base with Boeboe. If all's well, we're done until/if we need her again one day! Whoohoo!!! I'll miss seeing her regularly, and I'll miss bouncing ideas and frustrations off with her. But I won't miss the almost 3k a month!

So, now it's school holidays. Winter holiday. We've waited for this holiday with so much anticipation. Almost 4 weeks of sleeping in. Snuggling under the blankets. Sitting in the winter sun, just reading. Watching tv, playing computer games. And visiting!!! It's only our first week, and we're already fully booked. Today the in-laws that visited over the weekend, left, and we took Mr N for an occupational therapy evaluation (for his terrible car illness). Tomorrow, my nephew and niece is visiting. Wednesday we're going to Spur (local family restaurant with lovely children's play area) with friends, for breakfast. Thursday nephew and niece is visiting again. Friday, a friend is bringing her 3 kids for a visit. So a busy, but exciting week waiting for us!

Boeboe was soooo difficult the past two weeks. We've been hands in the hair with her tantrumming, moaning and crying. Then, on Friday school closed. And guess what? She's been a little angel the past 3 days! Wow. I guess she was just extremely tired. I can imagine. Her term started by getting home from a 5000km road trip and seaside holiday. Then, a few days later, she was operated on. Spending 9 days in hospital, and we all know how much rest you get in hospital! Then her recovery took a whole 6 weeks. Not cool if you're 7. Shortly there after, she had to start with the extra maths, trying to catch up on the school work she missed, and starting the speech therapy (which has ALLOT of homework). No wonder she crashed at the end of term. I just never thought it through. Poor poor little girl. Today, she's having a blast with her brothers. They've played and played and played. Like a little girl of 7 should do. I was thinking of starting her speech therapy again this week, and practising her multiplication tables. But I realise now she just needs time to rest. To completely get over everything that happened to her. She's been such a trooper. At some point though, even troopers have to rest and recover and get their bearings aligned again.

Monkeyman is showing signs of tiredness again. Not too bad. It's such an up and down with him. But he's loving having his brother and sister home with him! And he's getting more fierce now. Not just like a little sheep in the herd, just going with the flow. He's opposing me now when he feels it's warranted (not via tantrums, just saying No, or talking about it). He's dressing himself. He's also much happier. Laughing, being silly, joking around with us. Such a beautiful thing to watch him develop into his own unique personality. I love my calm, sweet, contend little monkey! I've said it previously, but it's just so apt. He's like a calm, deep, slow-flowing river. No upheavals. No upsets. No flooding the riverbanks!

6 Weeks post-op

It's actually already 7 weeks! But it's about the 6-week checkup at the neurosurgeon. I was just quite busy and didn't get to blogging until today.

So we've been to Boeboe's 6-week check-up and it was all GOOD news!! Yay! Dr was very very happy with her wound and healing. He said the tiny bit of swelling left doesn't bother him (so I assume it'll go down) and she has free reign to do whatever she pleases. If something causes the back to ache, she must just take it a bit slower for a day or two. I've noticed that she's extremely sensitive to the touch still. Especially when for example she'll sit back on a chair and forgets about the wound. Then she would say "ouch!" when it touches the back of the chair with too much force. Or if someone hugs her and touch her on the back. So it's not all gone and forgotten just yet. But we're getting there.

The wound around 3 weeks, before the last strips was removed. You can see on the top part, where the last remaining stitch was, is where there is still some swelling left.

After the strips have been removed. Isn't this great for 3 weeks?

The wound around a month or 5 weeks. The last stitch has absolved (and fallen off) and the swelling has gone down a bit. It looks really good.

The dr said that the cord definitely HAD to be tethered. There's no question about it. He said that even he doesn't understand fully what happened that day in theatre. But the results are that the cord is untethered, and the operation was a huge, roaring success! He said we can stop fearing that there'll be a decline of her improving symptoms again. We can accept that what we got, is here to stay. Isn't that the greatest, greatest news? I'm slowly starting to feel less stressed. Letting go of 18 months of worry and waiting for the next accident. The next "Mammmaaaa" out of the bathroom. I looked at the incontinence products in the supermarket the other day, as usual. After a minute of comparing prices and sizes, I realised....it's not necessary anymore! And when I bought a packet of pull-ups for Monkeyman, it was soooo great to only buy one, and not 3 or 4! It's saving us hundreds of rand per month. Really absolutely fantastic!!!

The neurosurgeon showed us on a little model of the back vertebrae what he thinks happened. It was quite interesting to "see" it like that. He warned us that there is a small possibility that it could happen again (tether again) around age 12-13 when kids go through a fast growth spurt. But he said the possibility is so small, that we shouldn't worry about it. Just take note of it.

He was very happy and surprised to hear of all her improvements. This is where we stand now:

Daytime Incontinence - Down to about one accident a week.
Nighttime Incontinence - Completely disappeared. 7 Weeks of continuous dry nights.
Needles and Pins - Happened once after the operation, around the 4 weeks mark.
Falling/tripping/stumbling/hitting toes - About a 50% improvement. It unfortunately still happens, but there's definitely a marked improvement.
Constipation - Definitely better than before the operation, but still a daily struggle.
Encopresis/fecal incontinence - Disappeared 2 weeks after the operation then 5 weeks of no accidents. Thereafter there was 1 accident. :( She was severely constipated, and it was a small accident. But still, it disheartened me a bit. Made me realise that everything isn't just magically fixed and forgotten. We have to keep our fingers on that constipation-problem every day. I gave her a multi-vitamin for 4 days, and I think that also worsened the constipation. I can't help but wonder if some of the improvement in this area after the operation is due to we being able to keep tabs on the constipation. Whereas previously we didn't? I don't know. Time will tell, I guess.

The doctor was very happy to hear about all the improvements. Especially on the needles and pins! That's such a definite sign of nerve involvement. To us though, the incontinence was the big thing of course. The disappearing night time enuresis to me, is the single most important sign. Because this changed like a light switch in her life. First, it almost never happened. Then suddenly age 6.5, it happened every night. After getting botox in the bladder, it stopped as suddenly as it began. Nothing for 6 months while the botox worked. Then, the moment it stopped working, the night time accidents were back. Every night. And again, the moment she was operated on, it disappeared completely. It's astonishing, but this more than anything, tells me the operation was a success. I could explain the encopresis away by saying we're keeping the constipation at bay. Or I could explain the daytime accidents away by saying somehow she's having good weeks again like in the old days (when she was age 3 and 4). And I could say everyone gets needles and pins, maybe she was just "weird" or "unlucky" that way. And some people would just be prone to falling down and bumping their toes or stumbling more than others. But I simply cannot explain the night time accidents away. Yes, having them may be normal. But disappearing completely like a flipped light switch after the operation?? There's NO other explanation other than the fact that the cord must've been tethered, and that the operation untethered it. Afraid as I am of things regressing...this is a fact I can accept. Because of the night time accidents. Somehow, that makes me thankful in a strange way, that the night time accidents started a year ago. I needed it to really believe what's happening.

It's going really well with Boeboe, as you can imagine. She's turning into such a lovely young lady. Yes, she still has tantrums. And yes, she still cries at the drop of a hat. But overall, it's improved tremendously! We don't fight so much anymore. I used to think our personalities must be clashing. But it wasn't that. Boeboe was just very much a product of what was wrong in her life. And now that it's been fixed, she can be who she's supposed to be. She's so kind, so generous, so sweet, so loving!

The psychologist said it's going so well, and she's just about over her trauma of the hospital and surgery, that she only needs to see her twice a month now. Not weekly anymore. Yay!!!!

Some people have also noticed how happy Boeboe is these days. One person said "it's a different child!". It made me happy, of course, to hear that...:) But it also made me sad, to realise what a huge burden she used to carry.

She's very relieved to not have accidents at school anymore! She's also happy to not have to wear nappies anymore. She still wishes she never needed the operation in the first place. It really was so very horrible for her. But it was worth it. And I'm so grateful that we were able to find someone at long last that could help her. Really, really help her. Not temporarily, not hoping, not just trying, but really help her. I'm so so so thankful.

So yes, she still gets accidents. But it mostly happens when either she waits too long to go to the bathroom, or mostly when she's being tickled by her brothers. I would love to see a urodynamic study of her now, though I won't put her through it just to satisfy my curiosity. But to compare the before with the after. It would be great to really see it. Black on white. I'm pretty sure it would be a closer-to-normal urodynamic study. Yes, I believe there would still be pressure. But I think it would be much less, and that her bladder would be able to hold much more volume before it starts to contract.

Boeboe had her IQ tests. Last week and this week. She found it tremendously tiring, but the psychologist said it went really well. We're getting the results after the weekend.

Boeboe also went for her speech evaluation, and we've received the report on that. It basically states that:

Firstly, there's something "wrong" with her lips, jaw, tongue movements, etc. I don't understand everything, but she doesn't move her tongue in the right positions, with the necessary speed. She has low muscle tone in the face/mouth and her jaw is slack. And she has too much saliva (something we've always known and wondered about). The last anaesthetist said it's possibly due to her GERD.

Secondly, Boeboe doesn't articulate very well.

Thirdly, she struggles to understand long sentences. She understand words and concepts, but not sentences. She's on a 6-year old level (she's 7 years and 9 months)

Fourthly, she's very behind on expressing herself. She's on a 4-6 year level with this.

Fifthly, she has some small auditive processing problems. This is the one I was scared about, and it turns out not to be a big problem. She mostly tested on the 7-year level. Just her memory needs a bit of work, and her ability to discriminate between similar sounds (like "ng" and "n").

They also tested Boeboe's reading ability. I was really worried about this, because she seemed to me like she's on the level of a grade 1. And turned out I was right. She tested on average to be around 7 years, 4 months. Fortunately, it's not as bad as I thought it could be. It's just 5 months "behind" for her age. So with exercise and practice I'm sure she'll get better. So I feel validated that I was right that she's behind with her reading, but I also feel less worried now, because it's not as bad as I feared it to be.

She's going for weekly speech therapy now, and we get LOTS of homework to do for it. I'm feeling a bit overwhelmed by the sheer amount we need to do. Because on top of this, we are still spending loads of time on getting her maths up to speed. And we still have the normal, everyday school homework to do. I just feel that she's only 7. To go to school for 6 hours, come home and do homework for 1-2 hours, then still do extra maths AND now extra speech therapy. Geez, the poor kid hey...:(

Mr N has started revision for his exams. And it's going very well. He had NO warnings this term, and he got excellent marks for most of his projects. So I'm feeling very positive about him this term. What an easy child he is. He does what he's told. He gives his best. He's intelligent which makes it so much easier on him. He has an excellent memory so he can study something now and remembers it 3 weeks down the line. If it wasn't for the epilepsy, I would've think he had the easiest, best life...:) It makes me happy, of course. Though a tiny bit sad for poor Boeboe because the contrast between them is just soooo great, so obvious.

Monkeyman got a cold earlier the week. So it wasn't the best week for him. Though, his immune system seems to be quite strong, so he was ill for a full 2 days and that's it. Much much better by yesterday...:) Yay! I hate seeing one of the kids ill. It's hard. And again I realised WHY I'm a SAHM. I really would not have been able to handle a child in creche. It would've broken me into pieces, to see them so ill so often. Monkeyman hasn't been ill for months. In fact, none of the kids have been on a/b's this year (touch wood!) so far. I'm sure at some point we will, I mean it's pretty normal for a kid to get really sick at least once a year?! But I'm really enjoying having such a good winter up to this point. Because if they don't get ill, I usually don't either. And I love not being ill regularly...like I'm sure everybody does! This is how it's supposed to be.

Despite being ill, I found that the past week or two Monkeyman has started to play more, lie down less. So I'm not taking him to the pead anymore for his regular "rests". I'm just keeping an eye on him for now.

Monkeyman got hold of my NEW lipstick. Sigh. But he does look cute, doesn't he? :)

Just a quick funny story about Boeboe. Last week, she told me yesterday that she wants me to have nonuplets!!!!  Nine Babies. NINE babies. Gosh, I told her is she CRAZY? Well, of course not in those exact words, LOL. I assured her it would never happen, doesn't matter how much she wants 9 little baby sisters and brothers. I told her my body is just too small to carry more than one baby. So she asked me if she will look like me one day? I replied yes (she's pretty much a replica of me, LOL). She asked if she then too would be a "small adult". I said yes. So she said "Oh no, that's awful!". I asked her why is it so bad to look like me? And she replied "Because then I too won't be able to have nonuplets!" OOOOOOOOOOHHHHHHH!! I told her it's better that way, because she won't be able to afford formula and childcare for 9 babies anyway...hahahahahaha.