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.