Inside the surgery

A friend asked me what precisely do they do during the operation. Well, here goes (this is how it's done, to my limited understanding on the subject):

• An incision is made under general anaesthetic, around the lower lumber vertebrae (around the waistbelt area)
• Muscle are pushed aside
• Vertebrae (the bones) are opened up by removal of the lamina (top part of the vertebrae)
• The dura (covering around the spinal cord) is cut open (this part scares me!)
• The filum is searched for and picked out between all the nerve roots dangling from the spinal cord (this part scares Boeboe's daddy!).
• The filum is cut. This is obviously the dangerous part. If there's blood vessels in the way, it may get damaged.
• The dura gets sutured
• Muscle is put back in their place (the lamina/bones that got removed isn't put back. In children it just regrow! Scary thought that she's going to be without part of the bone in her back for a while...)
• Skin gets sutured.

Complications of the surgery includes the following:

• Complications of general anaesthesia
• Infection introduced into the open spinal cord, leading to meningitis (as far as I know, the patient is given antibiotics for prevention)
• Infection of the wound
• CSF (cerebrospinal fluid) leak. This could mean a 2nd surgery is needed to find and close the leak.
• Risk of damage to any of the nerve roots
• Risk of bleeding
• And then, worst of all, the risk of paralysis that the neurosurgeon mentioned last time we saw him. Or damage to other blood vessels, leading to other nerve deaths.

In all my research, I haven't found any instance of a child that died during this type of operation. But, unfortunately I've found alot of instances where there was infection or CSF leaks. Leading to a longer hospital stay, etc. 

I don't know how I feel now, 4 days after deciding to go forth with the surgery. Still scared I guess. But so many people has been praying for us, literally all over the world. This morning, Boeboe's Sunday school teacher also told me they're going to put her name on the church's prayer list. Several friends also asked their bible study groups to pray for Boeboe. And of course, she has the whole family behind her.

With so many prayers going up for her, I kinda feel calm at the moment. Positive. She's in God's Hands, and that's the best and only place I want her to be.

For some other good news! Monkeyman initiated pottytraining!!! :D With both Mr N and Boeboe, I told them when they had to give the nappy up. I did it before Mr N was truly ready. Boeboe was ready. I tried for a few months now to initiate it with Monkeyman, but he just wasn't ready. Yes, I could've "forced" him, but for what? For my own selfish reasons? I didn't think it necessary. I just always told him about the toilet. That he too can wee on it whenever he feels ready. In December, out of the blue while visiting the dentist, he saw Boeboe use their toilet and asked to do it as well. And he made a wee on it!! I was ecstatic. Till we got home and he just refused! And kept on refusing to use the toilet at home. So I let him be.

And then, on Wednesday morning he made a wee in his too-full night nappy and ended up wetting himself. So he apologised to me for making a puddle on the carpet (so cute!). I told him it's fine, but to next time please use the toilet. So on Thursday morning he woke up and said "Mommy, please ask me to use the toilet?". I said "Monkeyman, do you wanna wee on the toilet?". He nodded, climbed on and wee-ed!!

Rest of Thursday he refused. I let him be. On Friday morning again he wee-ed on the toilet and was soooo happy to phone his daddy to tell him the good news.

On Saturday, he asked the morning, and once later during the day to use the toilet. So when he asked for the 2nd time this morning (Sunday), I asked him if we can take the nappy off completely and put on underwear. He agreed!!! Since then, he has constantly run to the toilet, only having an accident once. He even had his afternoon nap without a nappy and stayed dry!

So the first hurdles are done with. The only big hurdle left is that first pooh accident.... so far he hasn't had a pooh yet. Wish us luck! It would be awesome if we can get this whole pottytraining business out of the way before the holidays and Boeboe's surgery.

Surgery date!

We got a date for the untethering! The 14th of April. Less than 2 months. 7 Weeks. 50 Days.

Tonight, I'm so very scared. The neurosurgeon, dr L, was again very sweet and kind and assertive. I really like him, and he instills confidence. BUT. He said the reason dr M, the previous neurosurgeon, doesn't want Boeboe to have the surgery, is because of the high and dangerous risks. Dr L said he explained to dr M that he studied the condition (occult tethered cord), so it's not that dr M does not agree (with Boeboe having an occult tethered cord). He just doesn't know if it's worth the risks of the operation. So dr L asked us to really think about it before committing.

He said there's a very real risk (guestemate of about 5-8%) of paralysis after the operation. And he said it's not only going to be awful for Boeboe, but for us, and even him as her doctor, too. If that happens. He explained it like follows:

Apparantly there's little blood vesels that goes up along the spine from the bottom. It goes all along the filum (which is the part that tethers Boeboe's spinal cord too tightly, and that needs to be snipped). If one of these blood vesels are severed by mistake, the area which it serves with blood (and oxygen) will die off. This could cause paralysis or other problems. He says these blood vesels could be so tiny, it can easily be missed.

The other consideration dr L mentioned, is that if there is a blood vesel wrapped tightly around the filum, and he can see it but not remove it safely, he is going to abort the operation. He won't cut the filum, and will just close her up again. So Boeboe could go through all the pain of the operation, and have none of the gain!

It was really a difficult moment for me. A doctor looking at you very sincerely, very seriously, and then telling you that the risks are not just insignificant. Not to be dismissed. That it's real, and you have to think carefully about it before making the final decision.

Would I forgive myself if Boeboe ends up paralysed? Probably not. But should I just leave her be, and one day tell her sorry, we didn't want to take the chance? Would she forgive me then? Probably not.

I told the neurosurgeon that if I do not do it now, Boeboe will do it herself in 10 years time. He nodded, and added "But then it would be too late. The damage would be done." So I think we're on the same page here. The surgeon, and me and Boeboe's dad. We need to take this risk. We need to do this for Boeboe.

Dr L said it may already be too late, some damage could already be permanent. But we could potentially be looking at a 50-70% improvement. Maybe even more.

So there you have it. We have a date. But we're scared beyond belief. I don't know if my nerves is going to hold. My husband thinks 8% is so much. But I don't know hey, could we just leave her? Tell her we did everything we could, except try the cure? She's suffering already. We can't ignore that, can we?

I researched this condition extensively, and of all the people I read or heard about, none who had this operation, ended up paralysed. I do not want to brush it off as nothing, because it does scare me. What a position to be in!

The other thing I think we need to remember as well, is that if we do not do the operation, what will be in her future? It's not "just" incontinence. With incontinence comes alot of issues. One being that the bladder gets damaged from the constant spasms it has. It shrinks, and this would most likely lead to a bladder augmentation. A very, very big operation with risks of its own. So do we then just trade the one operation for the other? Cutting the filum does not guarentee that we won't need the bladder augmentation operation one day. But it at least gives us a chance. A chance of a cure, or enough improvement that she could be continent one day with the help of things like botox or a neuro modulator.

So we have a date. And lots of worries.

Two days and counting....

We have an appointment with the neurosurgeon on Wednesday. So 2 more sleeps... I'm slowly getting nervous about it. What if he decided (or was convinced by the older neurosurgeon) to not go forward with the surgery?

Not that getting a surgery date would make me feel any better, or less nervous! I'm still in fighting mode, concentrating on the fact that I have to get help for my daughter. But I'm sure that once I've "won" the fight, the nerves will most certainly set in about the surgery itself. It doesn't help to watch shows like Grey's Anatomy where a young, healthy woman died after surgery. She just didn't wake up from the anaesthesia! This is my little girl we're talking about...:( A young, sweet, loving, beautiful, very much loved child.

And not only does the surgery scare me, but the recovery! She's already sad because she can't play netball. But what's the use? There's about 3 weeks left of term and if we get a surgery date early 2nd term, she certainly won't be able to play netball for weeks and weeks.

Also scaring me, is the pain and how I'm going to handle it with her. Who can bare to watch their children be in pain? And especially a sensitive place like the back. Just the thought of an epidural/spinal is enough to make me nauseous. It was just so very much painful to me. How would it be to be cut open on the back? What if she also finds it too painful?

I'm trying not to think about these things too much, just yet. For now, again, I'm concentrating on fighting to get her fixed. A fight I should've done a year ago already. So much function was lost in the past year. It's really saddening.

At least, for now, it's going well with Boeboe. She's doing sooooo well with homework these days, I just want to jump up and down in joy. It's been such a long, hard road to get her to this point. Where homework takes us about 45 minutes or up to an hour (and not 2 hours!). Just in time for me to concentrate on Mr N's studies. Oh, and has that paid off!!! I'm sooooo happy and proud of him!! He got 3 tests back, for which he got A's. For all 3! I'm super pleased with him, and that we worked so hard. He was so proud of himself. Worth every minute I helped him with his studies. Now, just 6 more subjects to go....*groan*

It's also going well with Monkeyman. He's just looking forward to school again tomorrow. I hope his little friend would be able to go tomorrow. He was unable for the past 2 Tuesdays, and Monkeyman has missed him.

So that's our little Monday-night update. It's going to be a very eventful week, I guess.

This is what happens...

...when your 3-year old gets hold of your lipstick!

And then, he ran away when I tried to snap shots of him with the camera...:) He found it hilarious, running away from me, and then burst out laughing when I came around the corner, shooting him, with the camera of course :p :

Our camera batteries died on us when we wanted to take pictures of Monkeyman on his birthday. We then searched for our old digital camera and found these old pictures still on it. It's of Boeboe, when she was about 4 years old. Wasn't she the cutest little thing?

I can't believe that she could ever have been this small. Feels like a lifetime away. And also just like yesterday.

This week has been quite uneventful. Boeboe has seen her psychologist again, and she urged me to take her for an evaluation at both a speech- and occupational therapist. Well, I've been lax with it. I knew my daughter needed an evaluation. I thus phoned the school's OT and asked her to see Boeboe. They do it during school hours which is great (for me! Timewise of course). Our afternoons are busy enough as it is with the children's activities, homework, Monkeyman's nap and Mr N's exams. The therapy evaluation has been scheduled tentatively for the 2nd of March. She'll then give me a report and will let me know if speech therapy is also indicated (I do think it's going to be needed - sigh.)

On a lighter note. We watched the cricket world cup opening ceremony tonight, and at one stage there's some gorgeous ladies dancing in a little boat. Monkeyman piped up and said "look at the beautiful barbies"! :))

I've at long last added Monkeyman's pregnancy and birthday journals. I stored it under May 2010, for those interested.

Birthday boys

Both my boys turned one year older this past week. Mr N is now a round 10 years old, and Monkeyman a full three. I simply cannot believe my baby isn't a baby anymore. Sad, but true. He is such a sweetie pie. Extremely intuitive, his language skills astound me, his nature is so smooth and calm and collected. I'm really in awe of the person he is turning into. And Mr N...my firstborn. I remember the day he was born as if it really were only yesterday. He has come such a long way already. From the shy little boy who couldn't communicate, to this clever, amazing young boy he is today. His sharp wit, his sense of humour, his quick understanding, his gentle nature. I'm really excited to see what he does with his life. I'm sure it is going to be great!

So here they are, my two birthday boys:

Monkeyman (3) and Mr N (10)

We held a little party with friends on Friday afternoon. It was for both boys, but mostly for Mr N. So he got to choose the cake. He wanted a Ben 10 party, so we made the Ben 10 omnitrix watch. Well, our version of it...:) Mr N loved it!

Ben 10 Omnitrix watch cake

With little Ben 10 packets for the children:




Just look at this cutie pie. He had too much strawberry cooldrink, that's where the red lips comes from:


Monkeyman being funny

 Yummy mommy, this cake with black icing is delicious!

Eating some birthday cake

On Sunday, we invited all the family to celebrate the boys' birthdays with us. Again it was for both boys, but this time Monkeyman got to choose the cake (well, we decided he's so in love with our new Mazda, so we made him a Mazda cake...:) )

Monkeyman trying to help decorate his birthday cake

Dad and grandad worked very hard (but enjoyed every minute!) on the little car, even putting up side mirrors, LOL:

That's it, a little Mazda replica!

Look Mommy, some gifts!

Monkeyman loving all his gifts

Oooohhh, this one seems heavy!



Monkeyman absolutely loved blowing the candles, and poor Mr N had a hard time blowing 10 of them, especially as they re-ignited each time he blew on them...hahahaha:

Blowing out candles

Careful!

Fire!!!

Mr N absolutely loved this gift of his!

Action-figure-loving Mr N

When we handed out Monkeyman's birthday gifts, the camera battery died. So I took them outside to take his mind off opening the gifts until the battery was charged:

Playing games outside with my three gorgeous kids

Once the batteries were charged, Monkeyman was free to open his gifts:

Monkeyman loves his remote control car

Look Mommy, it's a "hamster gaatjie!" (translating into hamster hole). We got a dwarf hamster last year, with a little house. The door opening of the house had the same shape as a pool table's corner nets. So when Monkeyman saw a pool table, he labelled it "hamster gaatjie" because it looks exactly like the hamster's door opening...LOL.

Monkeyman getting his own mini pool table

Table all set and ready to go! Monkeyman trying it out:

Look big brother, I'm playing pool!



Common little ball, in the hole you go.


We've since lowered the table a bit, so that he finds it easier to play. He's really loving his gifts. As is his big brother. Though we're still awaiting a game we ordered for Mr N that was supposed to arrive the day before his birthday! But, it still hasn't. Not that he would've had much play time, being in the midst of exams. Well, more like tests, but still counting for his yearmark. And shame, yesterday after recorder practice he went straight to bed, vomitted and slept. Poor thing was ill with a stomach bug. And we couldn't do ANY studying! I'm really a bit worried, because he's writing his next paper on Thursday (tomorrow).

A bit of an update on Boeboe. My husband decided a man may have more authority and phoned the neurosurgeon's office himself. Alas, they told him to be patient, and that the doctor first wants to speak to the previous neurosurgeon again, before phoning us. Sigh. So, we're STILL waiting. I don't really know what for! Though, I've accepted that the operation is NOT going to take place during this term. So I'm setting my hopes on April. We have made an appointment with the neurosurgeon for next week, so I'm hoping we'll get some answers then. In the meantime, Boeboe's doing absolutely great. She's happy, contend, calm, not blowing her top over every little thing and throwing so much less tantrums! And all of it due to the nappies. The psychologist said it's because it was this huge thing in her life (getting the accidents) and now, suddenly, it's small. Insignificant. Wow. It breaks my heart to realise how difficult things have been for her. But I'm also very relieved that she's now the happy, contend little girl that she is supposed to be.

And yes, still no news yet...

So it's February. Hard to believe that the year took off with such a bang. Some things turned out better for this year than I hoped they would, some worse. I was really apprehensive with my eldest starting grade 4 this year. The year of writing exams for the first time. After the massive amounts of homework they do in our school for grade 1-3, I really thought grade 4 will be difficult. But, it turned out not too bad (so far). Apparently, homework is supposed to be work that was done during class, and not finished by the child. Makes perfect sense to me, so why wasn't that the policy of grade 1-3 as well? Why must our poor 7-9 year olds suffer to get through spelling, reading, speed reading, sentences and maths every day after school. It takes my daughter between 60 and 90 minutes every day to finish her homework. Yes, she isn't the fastest little girl. But she's AVERAGE. She doesn't have a diagnosis of ADD or anything. It's not even that she sits and dream. She's just slow. We spend almost an hour every day on reading, to get her to the level I believe she should be on for grade 2. Maybe my standards are too high? But without reading...what hope is there for a child in later school years? They need that foundation. It's already going so much better than a month ago when school started. And much better than grade 1, where she sometimes took 2 hours to complete her homework.

On the other hand, my grade 4 son, almost never has homework this year. It both scares me, and makes me tremendously proud. I'm scared, because I'm worried that somehow he doesn't do everything? But, he is a very fast and dedicated worker, and his grade 3 teacher taught them the value of rather finishing what you can during school hours. Instead of talking to mates and wasting your time, rather finish your homework. Then you don't have anything in the afternoons to do. It makes me very proud that Mr N learned this lesson so well, that he now rarely has homework.

This weekend, he started to study. Next Thursday, he starts with exams. Every Tuesday and Thursday they'll write one subject. They have a total of 9. Can you believe that? Ten years old and they have 9 subjects. Poor things. So he not only started with Thursday's exam's work, we also started with the week there-after's work, because his birthday and parties are around next weekend. So I don't want him to have to study next weekend. I want him to have a good time. Enjoying it all, as a 10-year old should. Today, we spent another 2 hours practising his maths and Afrikaans. Tomorrow and Wednesday we'll only concentrate on Maths, for the first test on Thursday. Then he can have a break until Sunday afternoon.

I'm hard at work with planning the birthday parties. We're having them together, but two of them. One with friends after school, and one with family over the weekend. I'm sure both boys is going to have a blast and enjoy all of it. Mr N chose a Ben 10 birthday party. Gosh, any ideas on the cake????? Me and his dad has this thing from birth where we make their cakes ourselves. Even though we're not creative or talented at all. It's just a tradition. I showed Mr N the pre-made rice cake and icing sugar pictures today, which you just place on the cake, and he said no thank you, I want mommy & daddy's cake! Uh-oh.

In the meantime, we're still waiting for the neurosurgeon. As promised by his receptionist, he did phone me. When I was in church!! So I missed his call, and phoned them to ask him to call me back again. Which, 7 days later now, he still hasn't done...:( I feel so frustrated, helpless and powerless. Boeboe's botox in the bladder is working out, and things are going downhill fast. There's definitely less function this February, than there was last February (before botox). So even though botox helped to paralyse the bladder, nerve damage was still taking place. It saddens me so much.

But still, between it all, she's doing very well. Her reading is slowly improving with our very hard work on it. She's gained tremendous confidence and a sense of relief and happiness with being on the pull-ups. She's darting around the house, smiling and tantrums have diminished ALLOT. It really surprised me. But it just goes to show. We ALWAYS said these tantrums ARE NOT NORMAL. But when someone here the word tantrum, they say oh yes, know what you're talking about. All 2-year olds goes through it. It's normal.

But there's normal, and there's Boeboe. Boeboe would be triggered by something so small, you'd be astonished at the sudden fury that blows over you like a hot sandstorm. Burying everything alive in her path. We'd shake our heads in absolute amazement with the force, power and endurance her tantrums showed. I once timed her, to see if I just didn't ignore tantrums long enough (ignoring being the choice of treatment accordingly to the experts). After about 2 and a half hours of CONSTANT, and I do mean CONSTANT screaming, her voice was gone, as was my patience, my sanity and my hearing. Ignoring Mr N's tantrums worked like an absolute charm. He had it for a full 6 months and then never again. He was still naughty, don't get me wrong. But no jumping up and down screaming or falling down on the ground. Anyway, I'm pretty convinced now that a BIG part of Boeboe's tantrums was both the painful/uncomfortable sensations her bladder caused her, as well as the tremendous effort it took from her to keep from having accidents. Of course, this isn't the only causes. It just exacerbated it, in my opinion. She still is, after all, my child. Fiery, stubborn, opinionated and sooooo righteous!

Monkeyman is also doing great. He's really enjoying school, though it does make him very tired. Ontop of going to school, we also have recorder practice on Tuesdays for Mr N and Boeboe in the afternoon, so it's a very difficult day for Monkeyman. He doesn't make it difficult for me though. He just takes it in his stride, and accept that his nap moves on with 2 hours. When we get home, he goes straight to his bed and falls asleep within minutes, poor thing. I have to wake him after almost 2 hours, for dinnertime!

But the rest of the week it's not too difficult. Mr N also wants to do chess, but it hasn't started yet. And we decided boeboe's just taking the recorder lessons. We don't want to make life too difficult for ourselves with too many activities after school. We still have to fit in study time every day as well as homework. For the next month Mr N will need a couple of hours a day to study, and if we have an extra-mural activity, it cuts down severely on study time for that day. After all, I come from an academically inclined family where sport and culture activities always came 2nd to academics. And that's what I prefer for my children as well. Sport is all well and good for children, but it's not (except when you're really exceptional) going to provide you with a salary one day.

In any case, it's going well with all of us. Very well indeed. My children are happy and thriving, and that pleases me. That's why I've been so quiet on the blog-front, LOL. Nothing to report really. Which, I know, is a very good thing! :)