Waiting...

I hate waiting. I'm not just saying that. I know, most people doesn't like waiting. But I really, really despise it. When I stand in a queue or sit in a doctor's reception room, I start counting, in my head. Count count count....anything to just let the time pass. And to keep my mind busy. I hate it when my mind is blank. I can't do it. I need to keep it busy. This is probably why it's difficult for me to switch off at night, to fall asleep.

Back to waiting. So ja, we're waiting. Waiting on the doctors. And it ain't easy. I phoned both the neurosurgeons' offices. The old neurosurgeon is back from holiday, so we're waiting for the new neurosurgeon to speak to him about Boeboe's case. Then I phoned the new neurosurgeon to get an update. The receptionist told me that the hospital's neurosurgeons all meet on Wednesdays. So only next week Wednesday will they (hopefully!) discuss Boeboe. I just hope that we'll have an answer SOON thereafter. I'd love to get a surgery date then, but that may be asking too much? Thing is, we're planning a road trip middle of March. I can't expect Boeboe to have a back operation end of February and be fine in the car for hours on end a few weeks later! So I really, really want to sort this all out ASAP. You'd probably ask...why not postpone the road trip? Well, that would be a bit problematic to say the least. First, it has to be a school holiday, since Mr N is now grade 4 and writes exams from this year. So, our options for holidays are March, June, September and December. We plan on going to the Southern coast of our country, which has a winter rainfall season. With rain sometimes falling for days and weeks at a time. So going down in June (mid-winter), would be just silly. September holiday is only 10 days long. We need much longer than that (it's about a 4000 kilo round trip we're making). And December is just too expensive for us to go (being mid-summer holiday season). So that only leaves next year March if this year doesn't work out. So, as you can see, we really, really want to go. We've been planning it for 2 years, and would be so sad if we have to postpone with another year, because the doctors couldn't operate in time.

So everything is on hold. I hate not being able to plan. I want to know what happens and when it's going to happen. Now, I can't even plan my boys' birthday parties for February, because we don't know if and when Boeboe will have the surgery. I can't accept other people's invitations, because again, we don't know when Boeboe will be operated. We can't make appointments for Boeboe's care (phsycologist, occupational therapyst, speech therapist, etc.) because of the unknown surgery date. We can't even plan any weekends away.

So in the meantime, we're hanging in limbo. I need to sort things out for Boeboe. She's having accidents at school, and we can't have that happening. The botox hasn't worked it's way out fully yet, so there is still some "coverage" from that. But unfortunately it's not going too well otherwise with her. So what now? What do we do until surgery? Friends have suggested some very nice options/products which I want to consider...but what if surgery will happen in a few weeks time? Is it worth doing anything before that? Spending money on something that may never be needed? If we're lucky, of course. Then surgery will take care of the accidents once and for all. If we're not as lucky, we may need to asap find something to help her cope better at school, until we're sure where we stand after surgery. Then we can get a repeat botox session. I don't see that happening for at least some months after surgery! Since it can take nerves months to regenerate. In fact, they say you could see improvements even up to 18 months or even 2 years after detethering surgery. But I don't think we'd wait that long. After some months, I'd like to repeat the botox, if of course, it is still necessary. I guess we'd need to have a urodynamic study again first, to see what real improvements was brought on by the surgery.

So, now we're hanging in limbo. I can't help Boeboe much at the moment, I can't make appointments, I can't organise our lives. And I totally hate it. I hate not knowing. But what choice do we have? None. So, now we wait...