Normal treatment, or special treatment?

The thing I've wondered about the past week, was how should I have treated my little girl? In particular, with regards to her legs.

A few days ago, I was waiting for my son to come from cricket practice. I saw 2 moms coming out of the school with their little girls. Gorgeous little girls of about ages 6-8. They were wearing tutu's. The whole little ballet costumes, in fact. The two families looked so happy.

Somehow, it hit me. The fact that my little girl couldn't do that. I did. I took ballet for a while, and I absolutely adored it. I would've continued, but my teacher went away. We lived in a small town, and there was no one to continue our lessons with. The teacher urged my mom to take me to the next-door town, because accordingly to her, I was good. It warmed my heart, but I told my mom it's okay. We don't have to continue with lessons. It broke my heart, which I never told my mom. But I was old enough (at about age 8...hahaha) to know that we weren't rich. And that it would cost my parents allot of money to not only pay for my lessons (with the previous teacher it was free, but in the neighbouring town it wouldn't be), but also the petrol money. I knew it wasn't worth it, because even if I was very good, I wasn't exceptional. It wasn't as if this would've been my career one day.

So when I had a little girl, I was excited about the idea of her doing ballet one day. Not super excited like it's a burning desire in me. Just excited because I loved it so much, and hoped that she too would find joy in it. Soon after starting grade R, I asked Boeboe if she'd like to start ballet. She agreed, very excitedly. We made sure with her orthopead surgeon that it was safe for her feet/legs, and he said yes, it won't cause any harm. It may even be beneficial.

Sadly, Boeboe didn't enjoy the ballet. In the beginning, she couldn't tell me why not. She just continued to be negative on ballet days. Seeing it as a chore, not a joy. I used to be excited about going to my classes. She wasn't. She was strangely not very talkative about it at all.

After some time, she started complaining about it. Her legs hurt. She couldn't explain to me why and what precisely. Just that it hurt. A few months later, she was able to vocalise it better. Telling me what they do, when it hurts. Usually, it was when they were stretching, or twisting their legs or feet.

Numerous times I'd ask my husband if we should allow her to stop. Every time though, we thought lets just give her some more time. Let her try and find the joy in it. Let her learn that one should not give up, just because exercise can be painful. Let her learn that if you start something beginning of the year, you see it through until end of the year.

So. We treated her like a normal little girl. We treated her like we would've treated any girl of ours. Not like a disabled kid. Partly of course due to the fact that we didn't know yet that she was disabled. Sometimes, I did think...what if something is wrong with her legs? Ballet isn't suppose to hurt at this age? But then I'd shrug it off again.

End of that year though, I gave her the choice if she wants to continue or not, and she immediately said no thank you. She chose to do a music/drama type of class, which she enjoyed thoroughly.

So I sat in my car a few days ago...watching those little girls walk happily out of the ballet lesson in their little costumes, and I felt like crying for my little girl. Because of the pain I put her through. She tried to tell me. Yes, it couldn't have been TOO bad, because it's not as if she was crying afterwards (or during) lessons. Or begging me to stop. She would just matter of fact telling me she doesn't like it much, because it hurts her legs. How was I to know?

Now I'm wondering. If we have known...almost 3 years ago. If we had known that Boeboe has a nerve condition involving her legs. Would we have been more sympathetic? I'd like to say yes. Would we have let her stop the ballet classes? I'd have to say Yes, most definitely.

What would Boeboe have learned from that? That her parents are sympathetic and supportive? Maybe. That you can stop something when it hurts and you don't like it? Yes. That you can use a disability to not do something that causes pain? Yes. That you don't have to finish something when you have a good, valid, solid excuse? Yes.

What did she learn? That her parents were unsympathetic and not supportive? Yes. That you have to stick through something despite it being painful? Yes. That you have to bear and grin? Yes. That you have to be strong? Yes. I can go on and on. Is this what I WANTED her to learn? No. A big, fat, solid NO.

People tend to say...don't wrap your disabled child in cotton wool. I don't. My daughter doesn't even know that she had a "disability". Or have. Whatever way you want to look at it. She doesn't know there's something different between her and her brothers. Now that her bladder is "fixed" in her eyes, she doesn't know there's any more difference between her and her peers. So I certainly do NOT wrap her in cotton wool. I do not safeguard her. I do not protect her from unnecessary hurt because of her condition. Maybe because we didn't know about this condition from birth? Maybe because by the time we knew for a fact WHAT is wrong with her, she was already operated for it. I could never mollycoddle her because of my suspicions. Until we had a diagnosis, I treated her like a normal little girl. Then, after her diagnosis, she's been operated on already and mostly "fixed". So no need to treat her different than any normal little girl.

But then I think of the ballet. And I feel sad for her. Sad that she had to do something physically painful and uncomfortable, because we didn't know about her condition. How unfair towards her. Didn't she deserve to be treated sympathetic? And supportive?

So what's better? To treat a disabled child "normal" so that she doesn't feel disabled? Or to treat a normal child "normal" and then finds out she isn't so "normal"? Which hurts the child more? Isn't it the right of a disabled person, to be only pushed to her limits, and not beyond? Isn't it fair for a disabled person to be treated inside their limits? I once complained to a neurologist that Boeboe can't walk very far without getting very tired. He answered: All children gets tired when walking far.

True. But a able-bodied child gets tired differently than a disabled child. The latter's tiredness goes much much deeper. It causes aches and pains and a sense of failure. Is that fair? Should you push your disabled child until they feel that sense of failure? And then wash your hands in innocence and say "I didn't want her to feel disabled"?

OK, I'm rambling now. Like you see, I'm struggling with this. How far does support, sympathy, empathy and acceptance go? And how far do you push a little child? To be normal.

If I could do it all over again. This time WITH the knowledge of my daughter's condition. WITH the knowledge that her legs have been touched by her condition. I would've done it differently. I would've been more sympathetic. I would've looked for a trolley in the mall earlier. I would not have gotten cross with her when she complained she's tired. I would not have walked so fast. I would not have told her "everyone's legs tire" when she complained. I would not have urged her to take ballet. I would not have told her she had to finish the year's ballet. That it's okay and acceptable that it makes your legs ache. I would've given her more choices. Less forcing. More support. Less arguing. More sympathy. Less denial of her feelings. Would this have changed her into a wimp? Into a worthless person who do not push herself? No. It would've validate herself. That what she was feeling, the pain, was real. It would've given her confidence in the fact that her parents believed her. I think the lessons she should've learned, was more valuable, than the lessons she did learn with our unsympathetic attitudes. So I'm sorry. Sorry that I didn't know. Sorry that I acted like everything was normal. Sorry that I didn't believe my daughter. Sorry that I didn't support her.

New school term

So the school holidays is over...:( It was so nice. Every minute, every week. Three weeks of bliss. Pity it had to come to an end. Just the weekend left, then it's back to school. Back to the normal routine. All the running around, the activities, the homework, the early mornings, the lunch box preparations, the school clothes, etc. etc. etc.

The kids arrived safe and sound back from the grannies on Wednesday. They had a great time! Boeboe was very pleased when she saw her room when she got back. It's all sorted, packed, stacked, and looks neat and orderly again. Wish I had time (or rather, the energy and inclination) to now tackle Monkeyman's room, clothes and toys! Fortunately Mr N's room is still nicely ordered and neat. His toys just neats sorting, and we did half of that.

On Thursday, my sister brought us a new puppy! He's still nameless, since we said everyone has to agree on the name. Trying to get 5 people (or at least the 3 kids) to agree on a name seems to be almost impossible! The puppy is very cute. Still small. And a mixture of quite a few small-breed dogs. Very soft, longish hair. Cutest little face. And a personality that seems would blend in easily with our family. We're trying to make it an outside dog. Only allowed in the kitchen at night, since it's winter and very cold at night outside. After the years of struggle with Boeboe's accidents, I just can't face doggie pooh and wee all over my house too. As it is, it already happened once because Boeboe left the door open. And of course quite a number of accidents in the kitchen during the night. But I throw newspapers in the little area we block him off in. So that's easy enough to clean up every morning. Not nice though, so I look forward to winter being over, so that the puppy can sleep outside. The kids are trying to teach it to only wee and pooh in one place (at the back of the garden). Since they're the ones who have to pick up the pooh (with a poop scoop).

Here's some pics:

The new puppy

Mr N with the puppy

Our puppy on the right, with his brother. We could choose which one we wanted.

Introducing the puppy to the bunnies. Both were rather skittish...:-)

Fluffy kept him in the eye. She didn't trust to leave the cage and leave him in there, LOL.

Monkeyman being silly, pushing his head in front of the camera...:)

The twins...as MIL calls them. They're always together, always playing, and absolutely adore each other.

Home alone...:-(

I felt guilty after my last post, LOL. It was just me me me me me. All about how I feel about everything. That wasn't fair. It's my daughter it's happening to. How I feel about it, should not matter that much.

So how does she feel about it? Well, to be honest, I'm not sure. Something weird happened a few weeks ago. We spoke about the time before the operation, and Boeboe couldn't remember what I was talking about. She couldn't remember having accidents daily, and why she needed the operation. I was flabbergasted and extremely concerned, so I queried the psychologist. She too didn't understand why that was the case. She said maybe Boeboe has really worked through all her issues already, and put it not only behind her, but blocked it off/out. She's done with that part.

I don't know hey. Still sounds strange to me. But, my daughter always had trouble remembering detail. So maybe it's just the way her brain is wired. Sooooo different from Mr N, who is able to remember minute detail of things from when he was age 3 and 4. Boeboe can't even remember something SO HUGE happening to her when she was 7!!!

Well, she couldn't remember it THAT day. When I asked her about it a few weeks later again, she remembered the operation, why it was done, and when I asked her if it worked, she smiled a big, beautiful smile and said yes!

Anyway, so she's handling it all well, I guess. She's over any and all trauma. She hates the meds she gets, and she hates the constipation. Apart from that, she's really doing well. Happily playing with her brothers now that it's holiday. She's having a blast, and she's really really being such a sweetheart. All the upsets and tantrums before end of term has all completely disappeared. I'm 100% sure the term was just too long and too difficult for her. Now that she's rested, she's fine! Just being an adorable, sweet, calm little girl...:) Love it!

So their grandmother called the weekend (Saturday) and asked if they can have the two oldest kids for the last week of the holiday. I first said no, since we had a busy week planned, but then after saying goodbye, I felt guilty. The in-laws rarely ask for the kids. Maybe once or twice a year. So I asked the kids how they feel, and all THREE exclaimed they wanna go!!! Even my baby...:-( Well, he's almost 3.5 years old, so no baby anymore really, though he'll always be my baby!

So we phoned the in-laws and asked if they want to have all three! I just couldn't tell Monkeyman he has to stay while the other two go. He loves his granny and grandfather, and he would be soooooo lonely without Mr N and Boeboe. He's played and played with them so much this holiday. From the moment he wakes, until he goes to bed, he was with one or both of them. Even when he got tired, he'd grab his pillow and blanket and bottle, and drop down next to wherever they were playing. Then he'd lie with them, watching how they continue the game they were all playing. Once he rested, about 15-30 minutes, he'd join them again.

So to tell him they're going and he's staying...it would've broken his heart. So against my own selfish wishes, I agreed to send all three. We dropped them with the in-laws today, and they'll bring them back after 3 nights on Wednesday. They wanted to come and visit with us next weekend in any case, so now they're just coming a few days earlier.

I'm sure they're all going to have a lovely time. Monkeyman was so excited to stay there, and he was adamant that he wanted to. He hugged us easily, and waved us goodbye with a big smile on his face. So I'm not too worried about him. Though, of course I'll miss him something terrible! Just like we miss the other two when they're not home. Neither me nor hubby likes it when the children aren't home. We don't like sending them away. We don't want time alone, or time to/for ourselves. We get enough of that every night when the kids go to bed at 8pm. We like having our kids with us. It's lonely and quiet without them.

So here's some pics taken during the first 2 weeks of the holiday at home:



My three little monkeys



Since we lowered the slide a bit, he's having so much fun on it

Just look at what Boeboe's doing! Jumping off the climbing frame, not even 3 months after a huge backoperation!!! Just amazing how their little bodies just recuperate and heal.

Even if we're all playing outside, when Monkeyman gets tired (every hour or so), he'll go grab his pillow, blankie and bottle, and lie down whereever Boeboe and Mr N are.

My little tree fairy! We bought and planted this tree before her birth, and it's only now possible to start climbing it.

The house was too silent, so I went in search of the kids. Found them outside, where they were holding a little picnic with naartjies, joghurt and juice. LOL, they're just so inventive and cute. Love it when they entertain themselves like this!

Look ma, no teeth! Monkeyman broke his front tooth (and swollowed it!). Poor poor little boy. We're waiting to see the dentist in a few weeks time. Hope they can help him!

Having fun with his version of Ben10's omnitrix

Just look at that cute little face



Having such a blast!



Monkeyman got a bubble "gun". They had so much fun with it!

Gotcha! Catching bubbles...

My beautiful Boeboe. Eating tomato sauce, lol.

Loved playing with the bubbles

Close-up of the healed wound almost 3 months post-op. You can clearly see the "hairy patch" that used to concern me, though most doctors said it's nothing. Clearly, it wasn't nothing!

It looks really, really good. Can't believe it's been almost 3 months already!





Feeling like a yo-yo!

One moment, I'm up and think the world is just great and that I couldn't be happier. Next moment, I'm tired and feeling down and wish some things can just get better NOW. I'm not very good with accepting things I cannot change. Wish I was though. It would've made my life so much easier.

So what am I on about? Well, the last few things that wasn't fixed by the operation. Everyone just keep on telling me how grateful I should be for what WAS fixed. How awesome and wonderful and amazing the progress has been. How happy I should be.

Thus, I feel terrible to be so ungrateful to still complain about the symptoms that's left. I really love the improvements, don't get me wrong. I don't want anything to change again for the worse. I really, really am thankful for all that's changed for the better. It's just that sometimes, I still get so depressed about the bad things. It's difficult for me writing about it, because this is such an open environment (the blog). 

I feel so sorry for my daughter, because accidents definitely influence how I feel towards her AT THAT MOMENT. Of course, it doesn't change my love for her. These things, just makes me irritated and short-tempered towards her. So unfair, but so human.

So our fight against this inhuman constipation continues. It just doesn't get better. We struggle so immensely, I don't know what to do anymore! NOTHING seems to really help! I've reached some kind of conslusion the other day. My daughter's constipation is made worse by her love for fruit. You'd think it would be the oposite. But remember that her constipation isn't "normal" constipation. Like the constipation most of the population struggles with at least some of the time. Her constipation is because the colon does not get the signals from the nerves to contract. It's totally different from the reason for "normal" constipation.

Fibre is a great thing for the colon, but only if you have enough water, and enough movement in the colon. Then it helps things along. But if you're lacking in water or movement, fibre works like a plug. It stops things in its tracks. I think that's what's happening with my daughter. That's why her diet (lots of raw fruit and veggies) had no positive impact, ever, on her colon. That's why she was so severely constipated as an exclusively breastfed baby. Because her colon doesn't move things along as it should.

So what can I do? I honestly don't know. The only 2 things that the pead could advise, was lactulose and polyethlene glycol (in my country, these are things like duphalac, Laxette and movicol/pegicol). Lactulose works beautifully, but not enough. I'm giving very high doses, and getting a 50% result. Movicol works slightly better, but to find the balance between getting things to work as normal, or causing diahhrea is extremely difficult. And ontop of this, Boeboe absolutely HATES the taste. She hates the taste of both movicol and lactulose. But if she can choose, she choose Lactulose. So we try to stick to that. It must be awful for her, drinking so many spoonfuls of something she hates. Daily.

I've resorted to a suppository a few times as well, and it DOES help. But to force your child like that...:( It breaks my heart into a thousand pieces and feels so totally wrong. She's 7! It's HER body! To force things like this...I just don't think it's right. I've done so many things to her over the years. Forced her to have so many procedures and things to try out. It's difficult. So difficult. So we use the suppositories as an absolute last last last resort. 

Geewhizz, a whole page full of talking about sh*t. Sorry about that. But as you can see, it fills my days and it's NOT nice. But, there's still MUCH improvement, so I try to hold onto that. The nr 1 accidents is really so little now. In volume, and in frequency! It's happening about every 10 days still. It's as if she can now control it some more. Somehow I still feel as if there's continuous improvement. So I don't want to go to the urologist just yet for medication or botox. I think she needs another few months to see how much control she can learn over the last bit of the bladder contractions. I have much hope left that some day, she'll be totally continent with her bladder.

After the one night time accident, there was none again. So, in 3 months, just the once since the operation! Praise the Lord! Same with the pins and needles. Just the one incident. Falling down/stumbling/bumping toes....still about 3 times a week. Just amazing. When it happens, I still cringe. I still wish there was none, or once every few months like my 3-year old. But so much to be grateful for.

So as you can see, I should not really complain. Not about the little bit of issues we have left. It's just that I struggle, and I'm not patient or kind-hearted when I struggle. And my daughter has had so much impatience from me, it's so unfair.

The speech therapy isn't helping either...:-( We've fallen behind with this so much, and we got some new assignments for over the holiday, that we had to start this daily from this week. Yesterday, she did one assignment where she had to answer 5 short questions and drew 2 easy pictures. It took her 90 minutes! Of which 14 was spent in two seperate timeouts since she gets so tired and upset about it all. This isn't fair. But what choice do we have? It needs to be fixed now, before she's grade 4 with exams and everything. Being slow with it, is no excuse NOT to do it...:(

Apart from these complaints, we're having a lovely holiday at home! Very relaxing. I'll post some photo's later in the week.

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.

Five week post surgery update

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).

Two week post surgery update

Well, it's almost 3 weeks, LOL. Our holiday is at its end unfortunately. Tomorrow, it's back to school for the kids. Mr N full time of course, but Boeboe will only go for about 2 hours (instead of the normal 6). I'm fetching her at first break. At least for this coming week. If she tolerates it well, she can maybe start full day next week.

So for the update....it's going sooooo well. I'm still extremely scared to say it out loud. So scared that it will jinx it or cancel it out. I know, silly hey. But it's easier for me to type it out, than say it over the phone. Yes, she's doing really, really well. I still cannot believe it. We've been disappointed so many, many times after procedures. Where you have this anxious waiting period, and then she has an accident. And another. And another. And another. Until you realise not much has changed. The procedure/medication/etc. did not help. Did not work.

This time, I didn't really waited anxiously. The doctor couldn't cut the filum. The operation was a failure. What was there to wait for? Yes, I couldn't help but have a corner in my heart that still held onto hope. That still believed and wanted to have faith. So when she asked to go to the toilet on that first day after she stood up for the first time, I was sooooo surprised and happy. The 2nd time I think I was even more surprised and happily so. But by the 3rd time I think hope blossomed. And then it just continued to get better and better.

No, she's not healed 100%. Unfortunately not. I don't think I really, ever, truly believed she would. But what we got, is so much better than what we had, that I do not even mind. Does that make sense?

So let's put it all out on the table. What we had. And what we gained.

Symptom 1: Constipation
Appeared as a breastfed baby. When she was about 2 weeks old, I noticed her stomach was hard and distended. Rushed her off to the doctor at 9pm the night, and she was diagnosed with being constipated. I was astounded. She was breastfed! Exclusively! Well, no answers from the doctors. Throughout her toddler years, I just kept an eye on this. Coming from a family where we're no strangers to constipation, I never gave it much thought other than keeping Lactulose (Laxette) in the cupboard for when it's needed. She ate lots of fruit and salad her whole life, so clearly it wasn't a lack of that. When she was diagnosed twice with impaction within 3 months from each other, I seriously started to work with her. Understanding for the first time that this isn't "normal" constipation. This was also the time I learned that it could be one of the very first symptoms of a tethered cord.

So where do we stand on this? Well, until before surgery, I gave Boeboe 3 teaspoons of lactulose daily, without it helping much. Since surgery, she needs 1 (sometimes 2) teaspoons of lactulose per day.

Symptom 2: Daytime urinary incontinence
This was and is probably her most severe symptom. I do not know when it started. If I have to guess from her behaviour, this has been with her since at least age 1. Unfortunately, I was none the wiser since she was on nappies until age 3. I potty trained her easily and beautifully. She had 6 accidents on Day 1, 2 accidents on Day 2 and thereafter she was potty trained. Until about a week or so later, when she had a urinary accident. Well, I made none of it and forgot about it. Pretty normal for a 3-year old, not true? So when she had another a week ago, I again ignored it. And the next week, and the next week. 6 Months down the line though, I started getting fed-up with this continuance of accidents. Mostly when she and Mr N would be engrossed in play (or so I thought). So we started disciplining her. We tried shouting, manipulating, awarding, sticker charts, taking toys away, even keeping her and Mr N away from each other (horrible, I know!!!). We thought if she really wanted to, she would stop if she knows an accident would mean not playing with Mr N. We took her to a play therapyst, who 3 months later threw in the towel and said there's nothing she can do to help, it must be physical since all her therapies failed. We took her to the paediatrician, who said nothing is wrong physically, so she must be naughty. Try stronger disciplining. Confusing hey? Then at long last we took her to a urologist, and after another 18 months of searching and trying everything they proposed, we've had the surgery.

So where do we stand? Well, it started with one accident a week, progressed to an accident almost every day, to 3-4 accidents per day, and lastly her being in nappies full time with rarely any feeling or control left of when she needs to go to the bathroom. Now, after surgery, she is back to the about ONE accident a day...:) Some days even NONE!!!!

Symptom 3: Fecal incontinence
Boeboe had ONE fecal accident when I potty trained her. She immediately caught on. In fact, she became hysterical when she had that first and only fecal accident. I explained to her what happened, and what she must do next time so as not to have it in her panties. I should've realised that for a little girl who was almost traumatised by that one accident, she would NOT have done it again because of behavioural issues. So after that one accident, she ran to the toilet like a pro for EVERY pooh. She never again had an accident. Until almost age 4.5. I was very surprised when it happened out of the blue, more than a year after potty training. But, like the experts say, I just ignored it. And the next time. And the next. It started to happen every few months. Then every month. Then every week. I was hands in the hair! No disciplining helped. I pleaded, begged, cried. I encouraged, prompted and pushed. I disciplined and even once told her to wash her own underwear. Nothing helped. Not therapy, not laxatives, not sending her to the bathroom the same time every day to sit for 10 minutes (or even 30 minutes!). 

So where are we now? Almost resolved!!! Well, it's early days. She still had about 3 nr 2 accidents since after surgery. But the past 8 days...nothing! I'm sure we'll still have some in the future. These things take time to heal. Her colon is clearly stretched out of it's limits.

Symptom 4: Feet and legs
Boeboe's grandfather noticed that her toes stepped inwards on her left foot. She was 5 and I was always getting angry at her for not being able to walk a straight line (without realising of course that she wasn't just not paying attention, she really was unable). The orthopaedic surgeon diagnosed her with one leg a tiny bit shorter than the other, the foot turning inwards a tiny bit and her hip coming out at a too-high-for-her-age angle. This all was the left foot/leg. He just kept an eye on it, since it wasn't getting worse and she needed no braces or anything. Around age 6, she started complaining of pins and needles on her left foot, but also sometimes the right. This happened about once every few months, then once every month, and the three weeks before surgery, it happened every day. Also, since around age 3, she would fall constantly. Mostly she stumbled over something that lay on the ground (like a toy), or when she walked upwards on stairs. Sometimes just for no reason, she'd just stumble or fall down. Oh, and the toe-bumps. Just awful. She literally cried at least a couple of times every day because of this.

So where do we stand now? Well, I can only comment on the needles and pins, and the falls/stumbles since the other signs would take time to correct itself. But since surgery, she had not complained even once about pins and needles, nor fell/stumbled even once! No toe-bumps. No falling on the stairs. No tripping over toys. Nothing!

Symptom 5: Night time incontinence/enuresis
This was her most recent and last symptom. When she potty trained, I took nappies away day and night, and was pleasantly surprised at her night time control even at age 3. She never wet the bed. Until about 2 months down the line. Then nothing again for about another 2-3 months. So, from then on (age 3) she wet the bed about 3-4 times per year. Nothing serious, I just ignored it. Sighed, yes, of course. Who wants to change sheets, especially if it woke her and she comes to tell me at 2am? But it didn't bother me nor her much, because she was dry 99% of the time at night. Surprisingly so, given the fact that her daytime incontinence worsened so much. Then, out of the blue in March 2010, when she was 6.5 years old, she had an accident at night. And the next night. And the next. Out of the blue, she couldn't control her bladder at night any longer. From then on, she had accidents 5-6, sometimes 7 nights per week. For 3 months. Then we got the botox and after just 1 accident, it worked for nighttime control! She had it back...:) Unfortunately, as botox goes, it worked out after 7-8 months. So January/February this year, the night time accidents started again. She wore nappies since February, so I didn't check religiously. But as far as I know, it was soon an every night thing. And worse, when she woke up, the need was so big that sometimes she couldn't make it in time to the toilet. And the nappy was too full by that time. You get the picture.

So where are we now? Well, it's been 15 nights since she first went to the bathroom on her own after surgery. And she had 15 dry nights. Whoohoo!!!! The last function lost, was the first and best to regain!! 15 Dry nights. It seems like such a small thing. But to us, it's huge. Very, very huge. She hated waking up in a wet bed. She hated the feeling, she hated the smell, she hated the idea of lying in urine. She hated feeling "unclean". Yes, the nappy took care of that, but of course it wasn't the best solution. So to be dry, is a huge thing for her. She still wears a nappy at night though it's unnecessary. When I asked her about this she said the doctor said the wound must be kept dry, so she's scared she'll have an accident in bed and the wound won't be dry anymore. LOL. It's so cute and logical, that I decided to give her time on this one. There's no need to pressure her, as long as the nappies are dry in the morning, I'm happy...:)

So this all may sound extremely wonderful. And yes it is. But, we're not in the total clear yet. It's early days. Anything can still happen. And, we're not completely OVER all of this. She STILL have accidents. And for the past couple of months, the nappies were quite comfy to me and her, because it meant we didn't have to do any cleanups. And for those who have children, you know how irritating winter and potty training is. And that's where we are now. Pants and socks and shoes and and and. So it's not all over and done and forgotten with now. It's just major improvements. It's not a complete cure. Not by a long shot. But we have hope again. We can breath again. We can fight again! If we have to go the botox or medication route again, we're up for the challenge. Maybe, this time, the bladder is calmer and can give the botox or medication a proper chance of working completely. And maybe, who knows, the bladder can be retrained to go to the bathroom every 2 hours and overcome the last everyday accidents. We're at least so much better off now, than we were 2 months ago. And better off than 1 year ago. A rough guess will be that she's regained 2-3 years of function!! So we're back to how she was around age 4-5...:) I'm hoping for even more improvements, and praying for no regression. But again...if this is what we're left with, then I'm happy, and I'm sure she'll one day be grateful too. Even though she has expressed a couple of times now that she wished she never had this problem, nor needed the surgery. It was allot to handle for a 7-year old!

So here's a photo update.

The wound and pressure sores (and lines!) around 10 days post op. Look at the swelling around the middle of the wound. I worried about that, but the dr said it's fine.

The wound. Quite longer than I thought it would be. Both pressure sore lines can be seen here, on either side of the wound.

The wound at 19 days post op. We've taken the plaster off today. The little thing at the top is an absolvable stitch. I assume where the last little plasters are left, is where the top part of the vertebrae was removed. S1 and S2.

She had a small allergic reaction to the plasters (the redness), so I'm relieved most of it is off now. The swelling is also down so much (just above where the little plasters are). And look how well the pressure sores & lines have healed!

And of course, during this holiday, it was Easter! Though the oldest kids know what it's about, they still enjoyed the hunt for hidden easter eggs. But none as much as Monkeyman did!

Got one daddy!!

Don't worry mommy, I always climb up here on my own.

Just look at the monkey at the back! She just completely forgets about her back and do silly things like that. Trying to get to the easter egg hidden on the basket ball ring.

The moment I saw it, I yelled at her to get down. Gosh, how she can do something like that 12 days post op is beyond my understanding! 

At least they had some fun too during the holiday. I took Boeboe and Monkeyman for a movie as well. Though, I realised too late afterwards that it was a little bit too much, too soon. I gave her some Lotem and asked her to lie down once we got home. The car ride especially was rough on her. Because we had to pick Mr N up from a playdate at a friend's house. Not far, about a 6km roundtrip. But, as I said, it was too much, too soon. So I'm a little bit worried about how she's going to take going back to school tomorrow. We'll see. If it's too much, I'll keep her home for another week. Fortunately it's only a 4-day week due to today's public holiday.

Still going well...:-)

Well, it's been 10 days now. Can you believe it? Suddenly, 10 days seems so short. It passed by so quickly. While in the midst, time drags. But afterwards when you think back, it's all just a blur. I'm grateful it's done. But somehow I'm terrified, because it's done. There's no going back. No changing. No chance for it being done better or different. It's done. Over. Forever. Nothing to hang onto anymore. No hope that things may still change in the future. This...now...is it. Whatever this is, it is it. The end. This is what we have for the future. The good. And the bad. It scares me. It saddens me. But it also fills me with this great, hardly containable excitement. Because, somehow, I still have hope left. I believe that God has given, and not taken away. I don't know why. I don't know how. It blows my scientific mind. It makes me realise how insignificant doctors are. How insignificant mothers are. How insignificant science are. All that matters in the end, is how great God is. Why did He chose my daughter to have an apparrent tethered cord? Why did He chose her to have not the usual, already rare, tethered cord, but an occult tethered cord? I don't know. But even more mind-blowing...why, after it turned out not to be the usual tight-filum tethered cord, does she experience improvement? I don't know. I cannot explain it. Except that God is Good.

Yes, she still has improvement!!! It's precisely a week since she's stood up for the first time after the operation, and been able to go to the bathroom on her own two feet. Since then, she's had 3 wee accidents, and 3 pooh accidents. One day was an overlapping of the two, so it's 5 days out of the 8 where she had an accident. This may sound like a lot to you, but to me, it's a GOOD week.

The best is still the fact that it's been 7 nights now...and every one of them has been DRY. That hasn't happened for months now. Not since the botox worked out. Three months before she recieved the botox in the bladder (13 months ago) her condition worsened to the point where she not only got day time accidents, but also night time accidents. It was a huge blow to her and me. Fortunately, the botox took care of that almost immediately. Unfortunately, the botox only lasted 8 months. Since it has worked it's way out, the night accidents were back in full force and for the 2 months before surgery, she had full nappies every night.

So for her to have dry nights, is absolutely mindblowing if the surgery was a failure. To me, it means only one thing. Surgery was NOT a failure. How...why...I don't know. All I know, is that people from literally ALL over the world prayed really hard for my little girl. People that knew her, and people that has never met her.

They say, with a tethered cord, you get back the function which you lost last. The function that was lost in the beginning, may be the last/most difficult to get back. Usually, that function is lost forever. In Boeboe's case, the very last function that she lost, has been the night time bladder control. And now, it seems, she has it back.

Another sign of successful surgery is that during our holiday in the month before surgery, Boeboe has complained nearly daily of pins and needles on the top of her left foot. Well, since surgery, she hasn't complained of this even once. When I queried her, she said it's gone. Completely, and she hasn't felt it at all. Isn't that just fantastic?

Maybe it's too late for all function to be regained. I accept that. The doctor warned us before surgery that that's most likely the case. But if we can just have what we have NOW. At this very moment. I'd be happy. I'd be extremely happy, satisfied and sooooo very grateful. Because as it is now, is acceptable. It's livable. It's something she can and will be able to handle. Yes, it's not perfect. Yes, it will still cause her heartache. Yes, it would still mean tests and procedures and doctors and hospitals and anaesthesia and botox and and and in her future. But. It's sooooo much better than 2 months ago. What we had then, was a complete nightmare. There was nothing. No function. No feeling. No control. ANYTHING is better than that. And what we have now, is so much better than just "anything". It's invaluable.

So is this permanent? I don't know. I'm scared to say either yes or no. I do not want to make any predictions. I just wanna pray and hold onto hope and faith. Because it's been so good. So very very good to live through this week. And to believe that this will be the future. The future seems so bright! So happy now!

So...for the last bit of great news. Boeboe didn't wear a nappy today!!! She had normal underwear on...:-) She was so excited when she agreed to it this morning. And it went PERFECTLY! Yay!!!!!!!!

Now...just for a few photo's from her time in hospital. The quality isn't the greatest, it was taken with my and hubby's cellphones.

The night before surgery. Settling in hospital. Holding tightly onto Lilly, her doll.

Shortly before surgery. In her theatre clothes.

About 3 hours after surgery. Starving, so she ate a toasted cheese sandwich.

Some friends of mine send us some beautiful gifts. These are the ones for Boeboe. She was thrilled!!

The wound. Her buttocks is to the left.

First time out of bed on Day 4.

The big teddy bear mommy and daddy gave her. She called him Bambi.

The cut after the plaster was removed (they covered it with another shortly hereafter). I guess the cut is about 11cm long.

Looking closely, you'll notice a brown line on the top part of the photo (buttocks is to the left). This is her pressure sores. There's 3 darker round marks which were the sores I worried about. This pic has been taken on day 8, 5 days after she started walking around and the sores started to heal, so you can imagine how it looked around day 3! The brown lines and 3 sores is still visible on her back, even after 10 days now.



Released from hospital! She was just so happy, and chatted all the way to the car...:-)





I'll take a few more pics later in this week, of how the new plaster looks, how the pressure sores are healing and when the plaster is off, how the wound is healing.