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.