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.

We're home!!!

We were released this morning, yay!!!! I'm so happy to be home. No more hospital food, hospital noises, hospital smells, taking stats, sleeping in lazychairs, driving to and fro, packing clothes and sandwiches, saying goodbye to the boys, and so forth. Thank goodness, it's over now. We've done it. We got through it. I can't believe it took 8 nights in hospital in the end. Wow. Exactly the same time she spent in NICU when she was born. Feels like a lifetime ago. Somehow this week felt longer than that one did.

So Boeboe is doing good. The doctor took the plaster off, and declared her wound is healing very well. They put another plaster on which has to stay on and clean and dry for another 10 days. And then we have to see the doctor again after 6 weeks. The sister first wanted to put a 5cm long transact plaster on. She looked at the wound (probably about 10-12cm long) then at the 5cm long plaster, and said she'll just stuck it over the middle part which still had some of those strips over. They cut from the L-vertebrae down to the bottom S ones, but only S1 and S2 were opened up (and that's where about 3 or 4 strips are plastered on - very bloody underneath, ouch!). Anyway, so she planned on putting this plaster halfway over a healing cut! I freaked out!! She got another nurse to fetch her a longer plaster, but it's a really pathetic piece of plastic. It's already loose on the one side. So I'm going to Dischem tomorrow to buy a proper, neat, good one that can keep another 9 days.

Mr N is ill...:( MIL brought a cold with her, shame, and I guess Mr N got it from her. Monkeyman also sniffed a bit tonight, so I'm praying that he won't get ill, and that Mr N will get healthy soon, but especially that Boeboe won't get it from either boys or MIL. Can you imagine how horrible that will be ontop of her recovery, shame.

I'll never forget Monkeyman's face when he saw me and Boeboe walked into the house this morning. His little face broke into this huge smile, he jumped up and down in joy and then ran into my arms. Ahhhhh.... And then he hugged Boeboe. Tenderly, because I immediately warned him to be careful of the big "eina" on her back. She loved being home. She lied down for quite awhile this morning, drinking lots and eating better than she had in DAYS. I knew once she's home, she would be fine with food and drink again. After a while her headaches seemed better, so she stood up and played a bit with Monkeyman. Though, I think she overdid it a bit, because after a while I could see the pain and exhaustion in her face. I gave her some myprodyl and made her a salad (her favourite). She was so happy to crawl into her own bed tonight. And fell asleep almost immediately, poor thing.

Unfortunately, she had a nr 1 accident in the nappy while playing with Monkeyman tonight. It saddens me. I've been so hopeful, but what if I were wrong and it was just a combination of some things that caused the improvement of symptoms? Things like the fact that she wasn't drinking much, so obviously not producing enough urine, having nothing to do in hospital - no one to play with, being asked regularly to go to the bathroom and her lying down, not walking around, so less pressure on the bladder? Urgh, I don't know. I'm just worried tonight, but we'll see how it goes tomorrow. 3 Accidents in 5 days is still good. Still an improvement. I'll still take any improvement I can get!

Tomorrow is Easter Friday. And with a nice coincidence, there's a few public holidays falling together next week. So schools have closed and my hubby took a few days leave. So we're all on holiday at home for the next 11 days. I'm so happy about it. We all need to relax and rest a bit.

Day 7

Yeah, we're still here. *sigh* We loved it so much in hospital, we begged the doctor if we can stay another night. (note the sarcasm, hahahaha)

Well, the doctor couldn't make it to his rounds this morning because of an emergency theatre case. So he only came tonight. He said that he can't let Boeboe go yet, but tomorrow morning he will take the plaster off and check the wound. If it looks good, we're good to go. Yay!!! Please please please don't let there be another emergency theatre case! Then we can be home before Mr N's school comes out for the easter break (at 11am). It'll be great if I can go fetch him. When school comes out early for a holiday, it's absolute chaos with all the parents and everyone is in a hurry, etc. I don't want the grandparents to experience that if they don't need to.

So ya, our Boeboe is looking good. But man oh man oh man. Sometimes I can just strangle her! She's being such a baby tonight. And no, please don't tell me after the week she had, she's allowed to. This behaviour has always been there, and just got worse and worse over time. So it's "normal" for her, nothing out of the ordinary because of the surgery. I had to beg, bribe and threaten my way through giving her lunch, medication, the nurses taking her stats, toothbrushing, drinking her reflux pill, etc. Urgh! My 3-year old doesn't even behave like this!

Anyway, sorry for the mini-vent. Physically, she's doing superbly. Still on meds, but just twice a day. Her pain is minimal. She still gets the awful headaches when she walks around, but it seems to be improving slightly, so the doctor says it's not a CSF leak then. Yay!!! She's very very scared of the dr taking the plaster off tomorrow, and to be honest, I'm too! It's going to be one long screaming/crying/fighting session and I'm so very tired of those. I'm emotionally drained. I need a good night's solid 7-hours sleep. Preferably more!

Speaking of which...there's this little irritating circular downlight right next to Boeboe's bed. Exactly where the lazychair is. Do you know how irritating it is to sleep in the spotlight? Well, that's how it feels, LOL. I've taped a tissue over it, hanged a towel, etc. Well, tonight I made a whole device out of the oxygen tank and pipes with the towel. It seems MUCH better. So here's to a hopefully better night...hahahaha. Our last! (Please let that be true?!)

It was such a busy day today. Woke up early, of course, this being a hospital where they think 5am is a good time for little girls who had major surgery to wake up. Neither of us were ready, so we snoozed for another hour. I then got ready for the day, thinking that the doctor would be here at 6:30 like always (gosh, but he has a long day, poor man!). So I waited and waited. At 9:30am I realised it's not happening, so I got hubby to phone his office. They told him about the emergency theatre early morning (wonder if it was a car-accident or what?) and that he'll only do his rounds in the evening. So hubby got the in-laws to come to hospital again around noon. I took Monkeyman home to do some quick clothes washing and then went to Mr N's school. We sat in the car chatting and eating sandwiches until it was time half an hour later for him to go to his chess class. So me and Monkeyman went home again for about 55 minutes. Which I used to bath, pack another night's clothes, make myself dinner (sandwiches again, blegh), got some cooldrinks for me and Boeboe and then got poor Monkeyman in the car again. (He sat in his carchair for 7 trips today!!! Poor thing). We picked Mr N up from chess and came to the hospital so that Boeboe can see both brothers for a change. Then the grandparents took both boys home, and me and hubby spent some time chatting next to Boeboe's bed. Was nice to have a coffee together, and not just say hello and goodbye in the passing!

Hubby went home to spend an hour with the boys, and I played Uno with Boeboe for a while. Now, she's sleeping peacefully and I can relax, knowing that this is hopefully our last night in here. I'm almost happy that we didn't know how long it's going to be in advance. The thought of spending 8 nights in hospital would've been enough to depress me. I simply cannot wait to sleep in my own bed, hug Monkeyman whenever I want to, joke with Mr N and not be so short-tempered because of lack of sleep, and eat WARM food. Not live on sandwiches and coffee. Yes, I could've bought myself some hot food from either the food kitchen or the cafeteria. But none of it is MY food. I'm such a fussy person. I'd rather eat a sandwich than eat a plate of food I do not like or enjoy. I want MY food. Chicken curry...lamb neck stew...smoked pork ribs....spaghetti bolognaise...aahhhh. Guess what I'm dreaming about tonight! LOL.

Day 6 - evening

So it went well the rest of the day with Boeboe. She kept complaining about headaches when she stood up. I took her for a shallow bath late this morning. She got all clammy and shaky after a while, complaining of the headache getting worse. I remember the feeling...I had epidural headaches after the birth of my first son, and it was absolutely terrible. So I really have alot of sympathy with it.

Boeboe's grandparents came to sit with her for the afternoon, while I went home with Monkeyman and fetched Mr N from school. After lunch I took him to recorder practice. I bathed Monkeyman (first time in a week! Felt good). Then we played ball waiting for the grannies to come home. My hubby went to relieve them at the hospital. When they were home to make dinner and watch the boys, I took off, back to the hospital, so that my hubby can have an hour with the boys as well before their bedtime. It's not easy now that he's back at work. Fortunately he has a little holiday coming up, just 2 more working days. But I'm hoping that we'll all be home by then.

It was great to play ball a bit with the boys tonight. We laughed and it was wonderful to see them happy again, and not stressed out, sad or confused.

Shame, the kids are also really missing each other. Monkeyman kissed Boeboe's arm the minute he saw her. It was the closest thing to him, so he just fell away, kissing her arm. So sweet. And again when we went home. Tonight Boeboe said "I'm missing my Mr N. I want my Mr N." Because he was in school around noon everytime when the grannies brought Monkeyman to hospital, Boeboe and Mr N haven't seen each other for 3 days.

So let's hope they can all see each other tomorrow. If Boeboe can be released from hospital. Holding thumbs!!

Day 6

Part of the furniture. That's what we're becoming, LOL. Still mostly all alone in the 5-bed ward. Massive private room for normal room tarrifs, hahahaha.

Dr was here this morning, and we're not being released...:(  He says that during the operation they tap some of the spinal fluid (CSF). This is now causing her headaches. He wants to keep an eye on her for another few days in the hospital, until the headaches improve. I guess the brain will have to manufacture new fluid to replace what she's lost. How long would that take? I hope not too long...I'm so tired of the hospital.

And I think Monkeyman is getting angry at me. I once read an article which explained that children do not understand why their mothers would "desert" them. So they show their displeasure and heartache by being mad at her. Shame, poor boy. Though, somehow I do think it may be doing him just a little bit good as well. To realise it's not only mommy that can wipe your bum or bath you or prepare your porridge for you. That it tastes just as well if grandma does it and that it's just as good if daddy soothes you when you wake at night. I think it may teach Monkeyman some much needed independance from me.

So Boeboe is doing very well. She walks around just fine. She's in no pain at the moment - had medication 5 hours ago. She's getting bored in her bed, and no nausea anymore. If only the headaches would stop, I'm pretty sure she'll be released. But the moment she stands up to go to the bathroom or take a stroll, the headache starts and she climbs right back into bed.

Now, for some really positive news...:-) Boeboe has been walking around for 48 hours. In that 48 hours, she had one accident. She did call me but I was taking too long. Since then, for 36 hours...NO accidents! Even nr 2 is in the toilet! And dry nappies for 2 nights in a row now. Is that even POSSIBLE???? I'm absolutely stunned, amazed, hopeful and soooooo scared that it's not gonna last. We've had so many, many dissapointments. I don't think I can live through such a huge one. Not this time.

So I asked the doctor...if the operation was basically a failure because he was unable to cut the filum, why would she have such major improvements in such a short space of time then? He said that maybe the filum WAS tethered to a tiny bit of the dura, and with cutting it open it did come loose. You never know! We'll have to see and be positive. But he says it does sounds good.

So...being cautiously optimistic here, and praying VERY hard!

Now...I know that some of you would immediately think...isn't it just psychological? Maybe, who knows? But believe me, we've been through some procedures where we ASSURED her that THIS IS IT. THIS is going to stop the accidents. And then...without fail up to this point, the procedure, medication, etc. would fail. So no, in my opinion, the current improvements ain't all psychological. Because then it would've happened with one of those procedures/medications as well, wouldn't it? At least for a while. But it usually failed quite spectacularly, quite early on in the game.

I'll probably give another update tonight, since all I have to keep me busy here at the hospital, is my book and my laptop, LOL. And uno cards that I play with Boeboe.

Day 5

And another eventful day. Will our lives ever be calm and peaceful again? LOL, I can't wait!

It started off with the doctor visiting extremely early (6:30am) already. Declared his satisfaction with Boeboe's recovery. But that he needs her to stay 1 more day. Tomorrow he wants to check her wound.

Half an hour later Boeboe said her head hurts. We stood up to take her to the bathroom, and she complained that the headache is worse. About 30 minutes later, she vomitted. Violently. We cleaned her and the bedding, and she was fine for almost 2 hours. Though, she refused to eat. She did drink a bit though. She just lied down horizontally, because she kept on complaining about her head.

Then she started throwing up again. After 2 hours and too many bedding and pajama changes, I asked the sister to please call the doctor. He prescribed something over the phone, which the sister wanted to give via an IV line! I flatout refused, and said it will be too traumatic for Boeboe, and "in any case I don't think you're going to be able to pin her down to get it in", hahahaha. Sorry, but I just thought how silly of them to want to put a drip into a child's already blue hand just for some medication??? So they changed it to a melt-under-the-tongue tablet, and it worked beautifully! She stopped vomitting, and even drank a few sips of tea during the afternoon.

I went home around noon, while my parent in laws sat with Boeboe in hospital. Monkeyman was soooo happy to have me home. We then fetched Mr N, and he was also really happy to see me. I spoiled them with McD's, and we sat eating together, just chatting about everything and anything. Then I did Boeboe's washing, took a bath and packed my clothes again. Wrote out directions for the in-laws to take Mr N to his recording practice after school tomorrow.

By that time it was 5 in the afternoon again, so off I went. Hubby already relieved his parents at hospital, so they looked after Mr N and Monkeyman at home, waiting for hubby to come home for dinner. When I got to the hospital, the peadiatric neurologist has been here already and did his evaluation with Boeboe. I'll do another post in a few days time about that. Suffice to say that I'm (again) mad as hell at this man. Pardon my french, but there's no soft way to say it. He basically, again, said that Boeboe's still lying. Like he thought 15 months ago. After the bloody darn difficult year we had, and the amount of function she has lost, he actually still think she's lying. I simply cannot even wrap my head around his thinking. This is the same little girl that told me things like the following during our 3-week holiday last month:
"Mommy, I wish I didn't have this problem in my back"
"Mommy, I wish I was like other little girls"
"Mommy, I wish I didn't need to wear the swimmers nappy underneath my costume" (She was highly embarresed by this).

I won't go into more detail about the neurologist visit now. I know you're all curious, so I'm really sorry. But I'm just so tired and it's late and I had a looooong day. I will get to it hopefully in the next few days.

Boeboe went to the bathroom ALL day long!!!!! Well, only about 3 or 4 times (she's dehydrated from the vomitting). But still...a dry nappy now for 24 hours!! Whoohoo!!!

She had a relaxing evening, just kept on complaining about her headache. Got some morphine around 8pm, complained about being nauseous but didn't throw up. And now she's sleeping soundly next to me (I'm on the lazyboy, tapping away on the laptop, LOL). So hopefully, if all goes well, tomorrow she will be released!!! I'd be so happy.

Day 4

What an eventful day!!! My hubby stayed over with Boeboe in hospital yesterday night, so I went home with the boys. I slept in a bit this morning and then first settled the boys with breakfast and with the in-laws at home, before I came to the hospital. So I missed the neurosurgeon and pead's visits. But, hubby says they're both happy with Boeboe's recovery and neither one knew what's causing the rash. It hasn't dissapeared, but also hasn't gotten worse. Still on the back and chest and stomach areas. Still light.

Boeboe's pressure sores have started to heal!! Yay! I was so happy to see that. Her back and bum is still very red of sitting/lying all day, but it's looking much better than yesterday. Her foot is also fine today!!! The pain in her leg and foot is gone, and she was/is able to move her ankle upwards!!! I was soooo relieved when I saw that. My guess would be that the nerves got "injured" during the operation, probably just didn't like to be moved out of the way, LOL. And that caused the pain in her leg, and the inability to move the ankle. So once it had time to recover, she got function back and the pain dissapeared.

I gave her a good wash this morning, put clean pajamas on her, and demanded some painmeds for her (which they shockingly haven't given her for 14 hours!!! Their excuse was - she looked happy and didn't complain. HUH???). Around lunchtime, me and my sister helped her off the bed. I was quite surprised that Boebe was, though reluctantly, willing to try. She was shaking like a leaf, and her legs were a bit weak in the beginning, but once she was able to stand on her own, she loved it! Didn't want to sit down again. Just stood and stood and stood. Then, demanded that she wants to walk. So I allowed her to walk out of the room to the corridor and back in. Yay!!! She still refused the bed, so I let her sit on a chair while they changed her bedding. Then she got a blinding headache, so back into bed she went happily. Got some painmeds and after an hour's rest she looked so much better. When her grandparents, father and brothers came to visit, she gave them a show of her walking again! She wanted to do more, but after the headache of earlier, I decided not to push it too far again. Then, about 2 hours after that, the nurse asked if we should change her nappy, so I felt it and it was dry. Boeboe then said she needed to wee! And that she wants to go to the toilet!!! I was almost in tears. Helped her off and she went to the toilet! Double Yay!!! I know, I shouldn't put too much into the gesture, but gosh, I so much wants to believe it's the first of some improvement! Even though my logical, scientific mind knows there won't be any improvement. I just can't help but hope against all odds. And believe in miracles!

Tomorrow morning the neurosurgeon is getting the neurologist to come speak to us. If he can get it organised in time, I guess we could be going home thereafter! Else, if it's only happening Tuesday, we'll have to stay another 2 nights. Gosh, I'd be soooo happy to be home again with ALL three my children. Though, the in-laws are really looking sooooo well after the boys. They don't lack anything, and gets spoiled rotten with love, attention and great food. And they bring the boys to visit every day, which means the world to me, Boeboe and both boys. Monkeyman's face just lights up when he sees his beloved sister. He doesn't even mind me much, just have eyes for her. It's so precious to see.

So, today it's all good news! Only "bad" thing today is that she threw some spectacular tantrums, and had quite a few crying fits. For absolutely no reason at all (well, in our opinion it's no reason to cry!). But I guess it's normal. She's tired, had a very taxing day and she wishes she could be home with her brothers. Hopefully tomorrow.

Day 3

What a long day. Boeboe is doing well. Slowly, but surely, she's getting better.

She's still in alot of pain. They're still giving morphine, which really helps. She's refusing to move much more than her arms and legs. So her back is all red now, and has some angry-looking little pressure sores on the one side. Her heels are doing better now that she's moving both legs, and her elbows are also better. It's just the back that's a worry.

She also developed a rash on her torso, which they're keeping an eye on. The nurse said it may be viral. I'm thinking more in the lines of an allergy. And wondering if it could even be bacterial...?! I don't think so, she was on antibiotics until this morning. So a total of about 48hrs.

Her drip and catheter came out, yay!! The neurosurgeon wanted to keep it in another day, since she's rather imobile, but I told him the catheter is really hurting and bothering her, that a nappy would do the job just as well. And since her painmeds were given orally now, she also didn't need the IV anymore. Unfortunately, both were extremely traumatic for her when it was taken out. She screamed and cried and yelled and cried some more. It was terrible to see. I cried with her. The plasters hurt her the most of the drip, and for some reason taking the catheter out was very very sore for her. I don't know why?! At least, both are out now.

Then she had to get new clean sheets, so she cried some more because they had to lift her. And again she cried when her pressure sores were rubbed with cream.

Shortly thereafter, her psychologist came to visit (isn't that the sweetest thing?). After seeing how much pain Boeboe still has, and how worried I was that the doctor wanted her to sit a bit today, which seemed like an impossible task with a child in that much pain, the psychologist told the nurse that as Boeboe's doctor, she wants to minimise emotional trauma, so we need an adult bed that can be lifted to let Boeboe sit upright, without Boeboe needing to do the work. The children's beds cannot do that. So off the nurse went and came back with an adult bed...:-) Boeboe screamed and cried when she was moved to the new bed. But once the head of the bed was lifted a bit, she did feel better in her almost sitting position and was then able to play a few games with her cousin that came to visit.

She had quite a few visitors over the past few days. Her face just lights up when her baby brother comes, and he just wants to be close to her. Sits next to her on the bed, looking adoringly up at her. It really meant the world to both of them to see each other. I never realised exactly how much they love each other until this past few days. Mother in law calls them "the twins"...:-)

Yesterday evening, I spent with Boeboe at hospital. It's not an easy stay. You get a lazy-boy to sleep in next to her bed, and gets woken up for so many things. When she needs meds, when her vitals gets check, when they come to rub her pressure sores, when she wasn't producing urine and needed to be forced to drink something, etc. So tonight, her daddy is staying over at the hospital, while I came home to spent some time with the boys. They really missed me, and Mr N was in tears today. So I played a bit with them, cooked them something, etc. Just a bit of normalicy in their lives. Hopefully tomorrow I can then spent most of my time at the hospital again, while daddy stays with the boys. We're very lucky though to have the in-laws with us. They look after the boys so well. Driving Mr N to and from school, giving them meals, playing with them, etc.

There was a bit of a worry with Boeboe's one leg. Her left leg was fine from the beginning. But her right leg is/was very painful. First, it was so bad that even if we touch her leg, she would scream the house down. It got better, but it's still painful. Her foot is the worse. The upper leg is now much better. The other problem was that she couldn't lift her toes up towards her knees (bend the ankle upwards). She could point her toes downwards, but not upwards. Until tonight. Her daddy got her to move the toes upwards. I'm so happy about that, I was really stressing that it may be damaged from the operation.

The neurosurgeon came to visit her again today, and when I asked him, he said it really is very unlikely that the cord was tethered at all. Since the filum was so thin. Usually, it's thickened when tethered. So there's not much hope for us to go on, that we may see any improvement in her symptoms. I can't believe that all we gained from this, was to learn that she definitely did NOT have an occult tethered cord. It's still too much for me to take in. Too much anguish. Too much guilt. Too much worries.

The nsg said he now wants to refer us to his collegue, the peadiatric neurologist. We saw him 15 months ago, but Boeboe's symptoms were less severe. So he laughed at me then (last January), told me Boeboe is lying and just naughty for not running to the bathroom in time. He also laughed at me and argued with me about how much function her anal sphyncter had. So I'm a bit reserved to let him "judge" me and Boeboe again. But he really is a very good neurologist, and we do need help. And I'll swollow my anger and pride to hear if he has ANY idea what now. The nsg said something else must be wrong, and we need to look for it. And starting with the neurologist is our best bet. Unfortunately he's away for the weekend, so we'll only be able to see him on Monday when he comes to do his rounds. Thankfully, the neurosurgeon will ask him to come and see Boeboe. I don't think I would've been able to get that much over my humiliation, to crawl back to him. But if a doctor asks another doctor for his opinion, I'm all for it.

The nsg also said that hopefully, after seeing the neurologist, we can go home on Monday. But, we had to get Boeboe to sit upright a bit today. We achieved that, so I'm happy. Tomorrow, I guess we'll have to get her walking, before she'll be allowed home on Monday. So wish us luck! It's going to be soooo difficult, with a child that resists us every step of the way. From taking medicine, to being turned on the side for the pressure sores treatment, to taking the plaster off her drip, to eating something, to drinking, etc. It's so difficult to keep a balance between being sympathetic because she's in pain and having a difficult time, and getting impatient because she's being needlessly (in my opinion!) difficult and stubborn.

So that's day 3. I now desperately needs to get some solid, uninterrupted (hopefully, if Monkeyman allows me) sleep to be able to cope with what tomorrow will bring.

Day 2

Boeboe was released from Peads ICU this morning. She's now in the children's ward.

She did soooo well yesterday after the operation. Her heartrate was a bit erratic, and her bloodpressure high, but it all stabalised throughout the night. She complained about pain, even after the morphine, so they gave her ponstan, and that helped alot. She was very teary when me and hubby said goodnight. She didn't want to let us go, but we weren't allowed to stay over in ICU. We phoned, and she slept about an hour after we left and had a good night. This morning she didn't eat until I arrived. She refused the nurse to feed her. So typical of my kids...hahahaha.

She was a bit emotional this morning. She didn't like waking up in hospital and we're not there. And she was in pain. The ponstan together with the morphine did the trick, again, fortunately. She's still on an IV, and has the catheter in.

Boeboe refuses to move. Her back aches when she moves, so now she doesn't even move her legs. Her heels have started to develop pressure sores, so I'm trying to encourage her to at least bend her knees a bit, to turn her heels outwards. We've started a sticker chart, and so far it's helped a tiny, tiny bit, though I have no idea how we're going to get her off this bed by tomorrow, if she's resisting even bending her knees 1cm!!

She's also keeping her arm rigid, because of the IV line. The nurse has put a little plank on it, to help her to move the arm a bit more. Pity they used the right hand for the IV.

That's all the practical details. Now, for the emotional stuff. The dr spoke to us yesterday afternoon, and we recieved some bad news. He was unable to cut the filum. There was a big blood vessel running alongside it, so the risks were too high. The strange, weird thing though is that the filum didn't seem tethered! He said it was laying loosely, it wasn't pulled tight. It also wasn't thickened. Instead, it was even thinner than the average person's. He said there's a small chance that it was tethered to the exact spot where he cut (S2-S4) her open, and that by cutting the Dura open he may have untethered the filum.

To me, that sounds like a very unlikely thing to have happened.

I was shattered after this news. The pead came to adjust some medication dossages, and I had a chance to speak to her. She too was astonished and super surprised that the cord didn't seem to be tethered. She too had no doubt that that was Boeboe's problem. Especially after the decline we experienced the past few months. Boeboe is now completely dependant on the nappies. She also lost feeling in her bum, and gets pinpricks daily in her feet, especially the left one.

How can you have something so progressive, and it not being visible to either MRI or naked eye? We're bummed. The pead wants a repeat MRI once she's healed up. So, in about 6 weeks time. The neurosurgeon said "this isn't the end of the road yet". But oh, I soooooo wished it was! I've put ALL my hopes on this operation. Where to now?

Out of theatre

Boeboe is out after 2.5 hours. Looking okay. She's on morphine in Peads ICU. She's not crying, but not feeling very well. But looking good I think. Will update later again.

In Theatre

Boeboe went in around 10:30. I stayed with her for about 10 minutes. She was quite scared in the waiting room outside theatre, so I pulled faces and made her laugh. It helped until she was pushed into theatre, so I kept on chatting to her. But when it got to the gas, she couldn't be brave any longer and started crying. She hates the taste of the gas, so she kept saying "no, no, no" and tried to pull her head away from the mask. The anaestheologist was kind to her. It didn't take long, then she was out. It's not nice to see.

So now we're waiting. It's been a little over an hour now.

This is it!

This is it, Boeboe is in hospital. She's very chatty...:-) Probably her way of dealing with it all. But, so far so good. She's fine and doing well. Eating (between chatting) her dinner now. Bland chicken, rice, pumpkin and sauce. Eeeuuww. We'll get her a toasted sarmie later tonight. At least she enjoyed the rice, and now the jelly of course. And the milkshake!

Tomorrow morning a child is getting a VP shunt before her on the theatre list, so Boeboe will only be operated on around 11am. It'll take between 2 and 4 hours, the nsg (neurosurgeon) said. I'll update later during the afternoon, once we know she's okay.

I can't believe this is it. We're here, the end of the road in our sights. The nsg was quite surprised at how much function she has lost. Like the feeling on her bum. And the fact that she gets pins&needles daily now, on her feet. Especially the left foot.

So hubby is going home now for a few hours, then he's coming back later so that I can go home for the evening. He's sleeping over with Boeboe tonight, while she won't need me that much. I'll sleep over once she's in pain and may need me. Fortunately, there's a lovely lazyboy next to Boeboe's bed. And they provide a pillow and blankets. Boeboe's bed is beautiful. Character-prints on the curtains, bedding, and even stickers on the bed. It looks lovely. I feel quite happy with her here. So far the nurses and sisters were very friendly and helpful.

So many people has phoned and sent sms'e, I feel so humbled. It's amazing how much people care for my daughter. There's so many people that pray for her. Bible study groups, friends, family, people all over the world. It gives me peace...with so many prayers, everything will go well tomorrow...:-)

Holiday fun...

So as I mentioned, we took a long roadtrip. 4000 kilo's! We drove down to the coast, and took what is called the Garden Route in South Africa. It's a piece of coast down on the South-East side of South Africa. We visited lots of little coastal towns. It was absolutely fantastic. The kids behaved well, the weather was as near perfect as we could've hoped for, and we had the best of times. Here's some (okay, a lot!) of pictures of our holiday. Firstly, the Garden Route:



The first day we arrived at the coast. Swimming in Jeffrey's Bay



Sunrise - the view we had from the flat we rented in Jeffrey's

 

Aston Bay...a beautiful piece of coast




On the dunes of Aston



Swimming in St Francis

The view from our rented place in Stormsrivier

The Bloukrans Bridge - the highest bungee jumping spot in the world

The beach at Plettenberg Bay. I was a little dissapointed in Plet...somehow I expected more!

Down at the mouth of Stormsrivier

Stormsrivier

Hanging bridge over Stormsrivier, where it meets the sea

Sunset over Stormsrivier

On our way down to Noetzie

Beach at Noetzie

Some of the Castles of Noetzie

Knysna, taken from Leisure island

Buffelsbaai - Second to Waenhuiskrans, this was my favourite place on the Garden Route

Victoria Bay, beautiful, but noisy! The sound reverberates against the mountains, bouncing back at you

The view we had from our compartment on the stationary train we slept in at Mossel Bay

Swimming on Mosselbaai's beach. Again...somehow I expected more. It was a bit...dull?!

Pebble beach at Suiderstrand (close to L'Aughulas)

It was a drizzly day, hence the coats and jackets

Sitting on the little monument at the most Southern point of Africa

Not only is it the most Southern point of the whole continent, it's also where the 2 oceans meet

My gorgeous 10-year old...Mr N looking cool

Well, that was the Garden Route. We ended in Waenhuiskrans/Arniston, where we stayed another 2 weeks. For the first time ever, I really understood why my parents chose Waenhuiskrans. I've seen many beautiful places along the Garden Route, but none came even close to the beauty and versatility of Waenhuiskrans. The next photo's was all taken in Waenhuiskrans: 

Me and Mr N surfboarding in the sea

One of the stunning views Waenhuiskrans offers

Another view, from another point

Waenhuiskrans is famous for its massive cave. But, there's also a small, little known cave in the cliffs. We braved the narrow entrance with the kids. This was taken inside.

The view from the small cave

FIL (Father in law) is very creative...he and my hubby built themselves a Ferrari!

This was one of my mother's favourite places on Waenhuiskrans. We regularly went there when I was little. Sitting next to this huge rock, looking out at the sea.

Monkeyman next to the life guard's little flag

My beautiful daughter, with beautiful surroundings

We have a tradition. Since having kids, we always make footprints of all of us whenever we visit the coast.

And handprints. Can you spot each one's? Mine is still just slightly bigger than Mr N's...:-)

Hubby running around with the kids...throwing each other with water balloons.

My handsome little boy, that aint so little anymore!

What better place to run off your excess energy?

Playing with a waterballoon.

Look at that mischievous face!

Every day we had to dug him a new hole to sit in, LOL.

She loved surfing. Though, not more than Mr N did!

Catching us some rock fishes

Monkeyman loved grabbing the poor things in his hands...hahahaha.

Lowtide...you can see all the rockpools which are hidden under sea during high tide

Lowtide at "Pikkies and Plooie" beach.

The teapot. Another favourite place of my mother.

Isn't that absolutely gorgeous?

Sunrise in Waenhuiskrans

And another kind of sunrise...when Boeboe smiles!

Building some sandcastles

The main beach in Waenhuiskrans. Look at how white the sand is. Not only is it white, but it's extremely soft and powdery.

Lowtide on Roman's beach

He loved the little rockpools

Another pic of Pikkies and Plooie



Another view of the rockpools where we catch little fishes



Mr N flying kite