Of course, there is never going to be any guarantee that a shunt will work for any length of time, but the longest we've ever had is 7months. That was shunt number 3. Her 1st shunt lasted a month, her second 3 months, lucky number 3 lasted 7 months, number 4 lasted just 3 months and number 5 lasted 3 months. Number 6 seems to be holding out, I am so delighted to announce that Caitlin's current shunt has made it to 8 months! But I will be ecstatic if C gets to a year with no shunt malfunctions. If she does, the risk of the shunt blocking drops significantly. The only difference with this shunt to the others is the neurosurgeon put the widest tubing he could onto the shunt, in an effort to stop the fluid clogging up as it travels down the tube into her tummy, which has always been the reason for her shunt malfunctions. It seems to have done the trick *touch wood*. I'm hopeful, which I kind of don't like because I will be so devastated if this one does block anytime soon. There is nothing else the neurosurgeon can do, there is no thicker tubing he can place, as she is too small for any thicker tubing. So I know, if this one fails anytime soon, it's very likely she'll need shunt op's regularly :(
For the first time, her hair has grown over her shunt area, any time it was starting to grow before, her shunt would block and she would be left with a bald patch were they had to shave the hair to operate, and a sore looking scar that people used to stare at and comment on.
Now, you wouldn't even know she had a shunt, her hair is growing beautifully over it. My 2012 wish this year was that Caitlin had her first operation free year. It still is. I know this shunt can't last forever. Sooner or later, the tubing will become too short as she grows and she'll need an op to lengthen the tubing. But a few years with this shunt would be nice :) I know that with spina bifida, shunt operations aren't going to be the only operations she'll need but we'll cross that bridge when we come to it. :)
Meanwhile, Caitlin is still dragging her feet when she's walking and the new Afo's haven't stopped her knees from bending. It's hard to know what's going on because her physiotherapist left a few months ago, we had a couple of sessions with a new one, then she went off on the sick, so now we've got cover physiotherapists, who all have differing opinions on what's going on with her. At out last session, the cover physiotherapist thought Caitlin had become over familar with her walker, and has got so used to it, she doesn't want to try on her own. I would agree with that, Caitlin calls her walker her best friend. She's so protective of it, if a child even touches it caitlin shouts at them "No, that's Caitlin's walker!" I hadn't imagined this scenario, the possability of her becoming too used to the walker, I just wanted it so much because it give her the ability to walk. I had hoped she would be walking independantly by the age of 2, but she's not, she's not even standing on her own. But that's okay because we are making some progress with the standing!
Caitlin is so funny and stubborn, if we ask her to stand on her own she gives us a dirty look and says, "No, I don't like standing, I want my walker." But she has done it. At physiotherapy, she was standing while I had my hand on her back, and I moved my hand away. She stood on her own for a few seconds, before looking at me, seeing I wasn't helping and grabbed a hold of me, saying "Mummy, don't do that again!" She has her own mind, that's for sure :) It has reassured me though, I know she can do it, she just doesn't want too!
Sometime's she'll forget herself and let go of her walker...
But if we tell her to walk with one hand, she'll throw a tantrum.
All we can do is keep encouraging her, give her lots of praise when she does stand alone, what kid doesn't like getting praise! We were at my mums the other day and Caitlin was proudly showing off to everybody that she could stand on the chair, not holding onto anything...
Unfortunately the occassions that she does want to try standing alone isn't very often, but she is trying it more and more so she's getting there!
Once the standing is sorted we'll work on walking on her own and when Caitlin does start to walk on her own, whether it be a month from now, or a year from now, or two years from now, it won't be a case of that's her walking now, no more worries with that. She might be able to walk short distances, but the likihood is she will need a wheelchair for long distances as it will take her so much effort and strength to walk and her legs get tired so easily. It took me a long time to accept that she will need to use a wheelchair for long distances, but I'm getting there :) I see all the cutsies with SB out there wheeling around, and thats shown me that using a wheelchair, is simply just another way of getting around. We are very lucky.
Caitlin has had her issues, but it could be so much worse. I'm lucky to be a part of some wonderful groups who are affected by spina bifida. There are mums and dads in these groups who have children with SB in hospital right now. Some are recovering from surgery, lots more are dealing with various issues that come with SB and hydro. I'm thinking of you all and if your reading this, please say a prayer for them all :)
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