Musing...

I was looking at old baby pics of Boeboe today (taking pics so that I have them digitally to post on here, they're all on films from those days!). And 2 pics stood out for me. Both was taken of her feet, from the bottom. The one a few days after birth, the other around age 1. And both times, both feet was FLAT. Though, the one of age 1 was a little, teensy tiny bit more arched than the one at birth. But stil...FLAT. I think, as soon as Boeboe's back, I'm going to take a pic of her feet at the moment. I'm sure it would clarify to anyone who still wondered if he feet is really arched or not. I know, all babies feet start out flat and then get their arch later on. But this...it's such a huge difference from that pics until how it looks today.

Even her grandparents looked at her feet a few days ago, exclaiming how abnormal they looked. Her feet was dirty, and the dirt didn't come close to the inside arches. Those parts were as clean as after her bath. I think when I saw that baby feet photo today, I realised...this really is neurogenic. And it really is progressive. I'm not making it up, or imagining things. It is nice to get little confirmations like this, to squash the lingering doubts if we're doing the right thing...going for this surgery.

It also makes me feel a tiny bit better about something that's been bothering me for ages. Around age 4, I got impatient with Boeboe, because every time we'd take a walk, she wouldn't walk in a straight line. She'd keep bumping into me, or turning in front of me so that I'd trip over her. It riled me! Age 5, precisely 2 years ago, the in-laws were here for Christmas and we took a stroll to look at all the lights. FIL (father in law) was walking behind me and Boeboe, and I was shouting at her to walk in a straight line and stop bumping into me (she was walking next to me, pushing her little doll in a stroller).

FIL called me to him, while Boeboe walked next to her daddy. And FIL showed me the problem. Boeboe was walking with her toes pointing inwards, which caused her to walk skewed. She couldn't walk in a straight line! I was heavily upset. Mostly because I never noticed it! How could I have missed this?

Well, that's where our journey to the pead started, who referred us to a bio-kineticist, who immediately told us there's some major problems and referred us to an orthopediac surgeon. He just kept a close watch on it all and said it's still okay.

Well, now I feel so much better. If her high arches wasn't there from birth, but appeared around age 5, then maybe her toe-in wasn't there either, and I didn't miss it! It appeared later! It all makes sense, and it makes me feel quite relieved, and so much better. Silly, huh!

And so 5 is down to 3 for now

 

Gosh, I'm not a good blogger, am I? But it's been a very busy time. We've prepared for Christmas, and now it's all over again. We had the grandparents over, and the kids had an absolute blast. They loved all the excitement, the gifts, the vibe, everything. We really spoiled them this year. Maybe we just felt they deserved it. All of us had such a tough year. Their little faces were just priceless, when they saw what “Father Christmas” brought them. Wow, it's been magical.

So today, the in-laws left us, and took Boeboe and Mr N with them...:-( They live about an hour's drive away from us, so they're going to visit them for a few days. I'm sure they're going to have a blast, and the in-laws love it, spoiling them rotten. But for me, daddy and monkeyman (which we felt were still too young to leave us for so long) it's sad. It's lonely, and it's quiet. Monkeyman is okay, he loved speaking on the phone with them tonight. And we'll probably enjoy the rest, and the peace, I'm sure. Fortunately it's only for 4 nights. On New Year's day, Saturday, we'll fetch them again.

We have a diagnosis, finally!!!

This is it! Yes, this is it!!!! WHOOHOO!!!! I'm so happy today, I can simply just dance! We saw the new neurosurgeon today, dr L, and he is simply just marvellous! No other words, just marvellous! He's young, dynamic, energetic, to the point, efficient, and best of all, he knows, believes in and has studied occult tethered cord!!!! And...he believes Boeboe has it! He said we cannot loose anything to operate for it. We can hopefully, just gain! He says he sees a tethered cord patient about every 2 or 3 years, so it's a rare condition. But he's never had an occult tethered cord. My daughter is his first (scary thought!). But, he's done tethered cord operations before, so I trust him. He said when he studied it 5 years ago, he only read about studies consisting of 6 or 8 children, so he asked me to send him all the research I did on bigger studies. I know of one study containing 60 children with occult tethered cord.

He said that he works very closely with dr M (they're at the same hospital) and he would not want to just go and operate on a patient of dr M without first consulting with him. So he's going to speak to him once dr M comes back from holiday (which is unfortunately only around mid Jan!!) and then he'll call us. Hopefully he can convince dr M that it won't be a huge mistake to go and operate on Boeboe. That she indeed has an occult tethered cord, and that it indeed really IS a true condition, and just because you studied 30 years ago, you shouldn't be so opposed to new things in your field that has started to prop up in the past 10 years. I just hope dr M can be more open, and won't try and convince dr L not to operate! That would be a serious step back for us. But, dr L looked 100% sure of his case, and sure of himself. What I liked about the visit, is that he didn't expect Boeboe to have serious neurological deficits. What people seem to forget, is that having an occult tethered cord, is NOT like having a tethered cord, though of course very similar. But, an occult tethered cord could be much less serious. Now, Boeboe does NOT have neurological deficit, like most tethered cord cases. And every time someone tested her, they expected her to have it, else it can't be tethered cord. Well, it's not tethered cord, it's occult tethered cord. THUS, the signs are more subtle, not as clear cut and obvious. Except of course, with her bladder and bowels. So dr L knew this. He didn't even test her on all types of neurological tests. Because it honestly doesn't really make a difference to his diagnosis, now does it? Even with the neurogenic bladder. He diagnosed her with an occult tethered cord, after listening to her symptoms, and how it progressed. Only after diagnosing her, I mentioned the bladder being neurogenic, and he was happy/surprised about that, and nodded his head. Clearly, because it fits.

He also didn't expect to see anything on her MRI's. He did not look at it, wondering what they're missing. He glanced at it, remarking “it's clean, just as we would expect it to be”. He gets it! He really gets occult tethered cord. I can't tell you how relieved I am. How good it feels to know that we're in the hands of someone that tells US that it's occult tethered cord, and that we must operate. And not US telling THEM what we think it is, or what should be done about it. I am so so so relieved, and happy tonight...:) I must be the first person ever, feeling relieved once their daughter has been diagnosed with a tethered cord. Gosh, I feel silly, but after this long hard year of fighting for my daughter, I really am just relieved. Her disease has a name. We already know the symptoms, we already LIVE the disease, we just needed its name. To know what to do about it. I refuse to sit and wait, hoping she'll outgrow this thing, and in the meantime it's just getting worse. I want to tackle the cause, and not just throw botox at the symptoms. So for now, I'm relieved, and I'm looking forward to the operation. Though, I'm sure within time, I'm going to get very, very nervous!

In the meantime, Boeboe is only now getting better from the UTI. Took her a whole week of a/b's...:( Poor little thing, it really was a terrible one. Oh, and the urologist's office phoned. Her botox has been moved to the 22^nd of January. But now we're not sure if we should still do it, or not?

Eyes, teeth and telephone calls

Some more check-ups. It's just never ending with a special-needs child, is it?!

Today we went to the eye specialist, or ophthalmologist. Both me and Boeboe. He diagnosed me with the beginning stages of glaucoma, though there is no pressure yet. So I have to see him again in 6 months time, and thereafter yearly until such time I experience rising pressure. In which case he'll start to treat me. For Boeboe we had much better news. He said her cornea's are still 100% fine, even though she has alacrima (lack of crying tears – from birth!). He said he wants to see her yearly, just to make sure her cornea's stay in a good condition. In the meantime, he declared her eyes 100% fit and well...:-) No need for glasses even! Whoohoo!!

This afternoon we went to the dentist, and we had some bad news this time. Boeboe has EIGHT cavities!! Now, tell me. How can this be NORMAL for a child that brushes twice a day, and do not eat sweets every day??? The dentist believes it's due to her reflux. But that means it's not under control? Urgh! When does she get a break, this little girl of mine? She's a real trooper though. Sat in the chair so that they could fix 2 of the cavities live (without local anaesthesia). It's baby teeth, so it didn't hurt. The eighth cavity which she'll fix last, is on a permanent molar, so that will require an injection...:-( She scheduled 3 more visits. We'll fix 2 cavities with every visit during January. What a busy January await us!

Well, now to today's exciting news!!! In between the morning's ophthalmologist visit, and the afternoon's dentist visits, we had a call. Now first let me explain. After the urologist told us to start looking at other neurosurgeons, I made a list of a few I knew of, and called the first one on the top. He's in our closest hospital (15 minutes drive) so I thought I'd start there. I liked the sound of his name...:-) Well, I told the receptionist the whole story, about the urologist believing my daughter may have an occult tethered cord, but we don't want to make an appointment with one neurosurgeon after the other, trying to find one that knows and believes in occult tethered cord. I really do not fancy going from one to the next, listening to another speech like the one from dr M that pleaded with us not to cut, because she WILL outgrow this. I simply cannot be deterred from what I believe in just like that, and patiently sit and fold my arms like I did when Boeboe was age 3, age 4 and age 5, without trying to help her. I truly believe we're past waiting, past outgrowing it.

In any case, the receptionist was extremely kind and sweet, and said she'll speak to her neurosurgeon, and get back to me on Wednesday. I kinda didn't expect too much, having developed a fatalistic attitude during the past year where we've been disappointed in the medical community over and over again. Even laughed at once, and called a liar in my face. And told my daughter is lying to me. But, let me not dwell on that now.

So, today the receptionist called me (and it's only Tuesday)! She said she spoke to her neurosurgeon, dr L, and that he are very worried about my daughter, and that we please must come in TOMORROW!!! WOW WOW WOW WOW WOW. Now, if you don't live in South Africa, you won't realise how amazing this is. You simply DO NOT GET INTO A SPECIALIST THAT SOON! It really totally blew my mind. Compared to the service we had previously from specialists, suddenly we had someone that was interested and WORRIED about my daughter, so much so, that he's pushing us in! And not within weeks or months, but within one day! I was overwhelmed, and told the receptionist as much, and thanked her profusely, promising her to be there at 9:30am as she requested. Could this be it? Could this really be it? That at long last, we've found a neurosurgeon that's going to help us? Let's pray so, indeed!

Not so good news...

Firstly, a little update. We went on holiday! It was so nice. We camped for a week. Just swam, rested and spent time with each other. We really needed this break. The weather was perfect. We mostly had sunny, hot days with blue skies.

They spent lots of time in the pool

Yummy mommy, this chocolate cookie was nice!

Can I have more?

 

Mr N



Boeboe

Boeboe really tried her best to keep it all together, but that resulted in her being like a little energiser bunny! Hopping up and down, trying to control the bladder spasms as much as she can. It only lasted 3 days, before her energy ran out and she lost control, but at least then calmed down again. We had some family camping with us, so I totally understand why she tried her utmost best not to have an accident. It amazes me, the mind's power over one's body!

So back to today. We've been to the urologist. And I'm sad. He basically told us today that he doesn't believe anymore (like he said pre-botox, 6 months ago) that she'll outgrow her bladder spasms after the next botox session. He previously said she'll need 2 botox sessions, 6 months apart, then she'll be “all cured”. This time he said she'll need botox every 6 months for the next 5 years, and thereafter he'll implant a neuromodulater that'll stimulate the nerves. Hoping that it would be a more long-lasting and better working option for her than the botox. Though, for the next botox session, he will inject more botox into the bladder. Paralysing it more than the first session. For the first, he injected 100 units. Next time he'll inject 120 units. The problem is, if he injects too much, it could potentially paralyse the bladder to such an extend that she'll need to self-catheterise from there on. Which totally freaks me out, after her 2 absolutely horrifying experiences with being catheterised before. I honestly felt like I pinned her down while someone “raped” her body. That feeling, for the mother of a 6-year old girl, is truly one of the worst nightmares to experience. I will never, ever forget that tremendous weight that settled in my heart while I held her down with my body, looking into her eyes – so full of horror, fear, helplessness and utter terror. Screaming hoarse, raw, heart wrenching screams.

The urologist looked at the diary I kept about all her accidents (nr 1's and 2's!) as well as all her falls. And he asked us about her history again. And this time he said...”yes, it indeed is suggestive of an occult tethered cord”. He urged us to decide if we want surgery or not, and to find a neurosurgeon that knows his stuff. What a turnaround!!!

In the meantime, her botox session has been booked for the 15^th of January 2011. It's shortly after school starts again after our summer holiday season. He unfortunately said he cannot help us with the nr 2 problem. Once she gets the neuromodulater in 5 years time (when her body has grown big enough to handle such an intrusive instrument), it may help for both bladder and bowel. Until then he has no advise. The good news of today's visit is...NO MORE MEDICATION!!! We can stop the oxybutynin! He said (precisely my thoughts as well!) that the little gain is not worth the severe side effects in her case! Whoohoo!!! I'm so relieved we don't have to go to grade 2 next year, with headaches every day and cognitive problems due to these meds.

Oh, and one last bad thing. Since coming home on Thursday, Boeboe complained about pain when urinating, so the urologist tested the urine and yes, UTI. A bad one. She's urinating blood now, but hopefully the a/b's will sort her out quickly. I feel so sorry for her.