A year later...

So, the previous weekend, it has been a year. Boeboe's detethering operation. The 14th of April. When I posted my last post. I didn't forget, I chose to ignore the date. I don't know why, but somehow I din't want to celebrate something that was so traumatic to us. Yes, the outcome was good. But it was still a huge trauma. I think deep down, it's still traumatic to me. I'm not sure if you ever get over seeing your 7-year old go through a back operation, just as you don't really ever get over seeing your newborn struggle for his or her life in NICU. It's something you accept, and you go on, but you don't necessarily want to celebrate it, even if it had a good outcome. Because you'd rather they never needed to be in hospital in the first place.

But ya, so it's a year later. And even though I don't really want to remember it all, it may be good to have a record of where she stands after a year. So let's start with where she was before the operation....

A year ago, Boeboe had the following symptoms and progression:
1. Daytime urinary incontinence. It started off as a once-a-week accident at age 3, a couple of times a week accident at age 5-6, and by age 7 in the months before the operation, she had so little control that we've reverted back to wearing nappies full time.

2. Nighttime urinary incontinence. To my utter delight, Boeboe was completely dry at night by age 3. She would maybe have 2 or 3 accidents a year. This would actually turn out to be a drawback, in the end. Maybe, if she also had little control at night, the doctors (and myself!) would've realised something really could be up. But because she had nighttime control, we all thought then her daytime lack of control must be behavioural. But then suddenly, at the age of 6, she had an accident at night. The next night, the same happened. and the next, and the next. Very, very strangely, she had literally lost the control she had, overnight. She was dry one night, and wet the next, and stayed wet from there on. This really triggered me as very, very strange.

3. Feacal incontinence. When Boeboe was pottytrained, she caught on with nr 2 within one day. She had one accident, cried from the fright of it, and then never had another accident for more than a year. I was amazed, since it wasn't that easy with her older brother. I marvelled at my clever daughter. But then she had an accident at age 4.5 years old. This turned to having an accident every couple of months. Later on, every month. Around age 6, it turned to every week. And by age 7, she had almost no control left. In the 2 months before the operation, I had to help clean her up about 3-4 times a day (she wore a nappy by then). This was difficult for her to handle.

4. Constipation. When Boeboe was a tiny, tiny baby, I once took her to an all-night clinic with a distended, rockhard stomach. The dr diagnosed her with constipation, even when she was an exclusively breastfed baby. From then on, she's always struggled with constipation. Nothing we tried, made much difference. Medication would provide temporary relief. By age 6, she was diagnosed with impaction.

5. Since age 3 or 4, I got angry with Boeboe when she would walk next to me, because she would always veer off towards her left and bump into me. At age 5, her granddad noticed that maybe it is because she had a slight toe-in. Her left foot's toes would point sharply towards her right, instead of straiht to the front. We took her to the orthopeadic surgeon, who diagnosed her with 3 slight problems. Her left leg came out of her hipbone in a slightly higher angle than it should've, her left toes pointed inwards and her one leg was shorter than the other. All of it was only slight problems, and he said it shouldn't interfere or cause problems. He was more concerned with her incontinence and thus suspected Spina Bifida Occulta. This was ruled out by an x-ray. By age 6, Boeboe was having problems falling numerous times a day. Or rather, she would stumble. At last 4 times a day, she would cry because she's hurt one or both feet, fell down on her knees or scraped skin off her shins. Around age 7, she also started complaining about daily pins and needles in her legs and feet. She used to complain maybe once a month, but by this time, it was daily. She also had regular pain in her legs during the day.

So this is how things started at age 3, and progressed up until age 7. It sounds so clear-cut, seeing it all like that now. But when you live it day-to-day for 4 years, you don't notice the patterns like that. You're unable to tell the doctors, and even when you do, they see you once off, and not for 4 years. So they don't realise the decline. At age 4 and 5, they tell you it's "normal". At age 6 they tell you some children has developmental delays, or that she's on the upper borderline of "normal". So even after 3 years of struggling, you're told it's all "normal". Oh, how I've come to hate that word..."normal".

So when the operation was done at age 7 and a half last year April (2011), she was urinary and feacal incontinent day and night, and would numerous times a day stumble and hurt her feet or legs. Then, the miracle happened during the operation. Even though the filum couldn't be cut, somehow during the operation, when they cut open the dura, whatever has tethered her back, has miraculously been loosened. I still believe that this was an absolute miracle. There is just no other explanation. From day 3 after the operation, when Boeboe was able to visit the bathroom by herself in the hospital, things has started to improve immediately. From that first night, she was dry! She still had daytime accidents, but instead of daily, it was again only a few times a week. And instead of no control over the nr 2's, she again had some control. Since the moment she was able to walk around normally after the operation, she noticeable complained less about hurting her feet or stumbling so much. She also had immediate relief from the pins and needles feeling in her legs. She also complained much less about pain in her legs.

So where exactly do we stand a year later? Well, she still has urinary accidents during the day, but only about twice a month. Most of it happens when she laughs uncontrollably, run around or being tickled. There has been accidents at school, one very bad one, so I do think we'll have to at some point, do something about this. Maybe botox again. But for now, she's handling it beautifully. And I really wanted to give her time to just settle and enjoy the new lease she got on life, and to not think about hospitals and anaesthesia and doctors and tests and procedures for a year.

Constipation has not changed much at all. Feacal accidents has improved allot, but is unfortunately still a really horrible thing she has to live with. It happens about 4-5 times a week. But where she used to have no control, she now gained feeling, after which she runs to the bathroom. So definitely an improvement, but still a horrible thing we live with on a daily basis.

She still experience the odd pins and needles or pain in the legs. But instead of daily, it's now every 3 months or so. Unfortunately, she still scrapes her feet and legs regularly on a daily basis. The podiatrist believes it's due to the one leg being shorter than the other. We have a check-up with the orthopeadic surgeon this week to see what he thinks.

Nighttime continence has dissapeared completely. Since the operation, there was one at about the 3 month mark, and then one at around the 6 month mark. In the last 6 months, none. Isn't this absolutely amazing? There's just NO other symptom, that tells me just so clearly that she really indeed had a tethered cord all along. Because the decline was so sudden, and so severe at age 6 (from almost never a nighttime accident to having one every night), and then the recovery so miraculous. For this, I really can only praise the Lord. He was good to my little girl. It feels good to know with 100% certainty what was wrong with Boeboe, and that the fight I fought for those last 2 years to get her diagnosed, was worth every tear, every drop of sweat, every traumatic experience, every minute of lost sleep, every hour of research I've put into it. It makes me feel good to know that I too, did good for my little girl. After the years of blame I've put her through, for having accidents, I at long last, did good.

So all-in-all, she has gained complete nighttime control, gained about 90-95% urinary control during the day, and gained an about 30-40% control of the feacal incontinence (rough guesstimates). I don't even want to think what our lives the past year would've been without the operation. It was a turning point in my daughter's life. It made all the difference. After continueing the phsycological therapy for a while, she has gained confidence, security and happiness. Something that she would not have had without the operation. Life has changed for the better for her. And I'd forever be grateful towards the dr that was prepared to take a chance and go in blindly. With no MRI evidence. With nothing other to go on than the word of a scared mother and father. And against the wishes of his esteemed collegue. And I'd forever praise the Lord that was with him that day, to guide his hands to cut at precisely the right place without even realising it. There is just no other explanation for the miracle that happened that day in theatre.

So yes, that's where we stand a year later. It's been a good year. A wonderful year. A healing year. And I am grateful.