The surprise of spina bifida

When we find out our babies have spina bifida, it's like our world is crumbling around us.  There's nothing positive about your precious child having this disability, well there wasn't for me anyway.  I felt so alone when Caitlin was diagnosed, and yet now it's so different.  I have made some wonderful friends, people I would never have come to know if Caitlin didn't have spina bifida.  There are too many people to mention but I am so grateful to have you all in my life.  One person who I am going to talk about, is one of my friends from Ireland, Rosie.  I met Rosie through Spina Bifida Connection, an online support forum for adults with sb, and parents of children who have sb.  We typed e-mails to each other, swapped stories and soon met up at a parent's night run by ASBAH (Association for Spina Bifida and Hydrocephalus).  When we met there was no awkwardness, conversation came easily, and it was so nice to have somebody who knew how I felt.  Rosie has two children, Katie and Jamie.  Jamie is 2 1/2 years old and has spina bifida and hydrocephalus.  I have him and Caitlin married off already lol.  Over the past year, me and Rosie have kept in contact reguarly, meeting up for playdates and at ASBAH events, and of course, running into each other at appointments at the Royal hospital.  She's been there for me when Caitlin has went through her shunt operations. We talk at length about shunts, walking, Afo's, and we have alot of conversations about peeing and pooping, (you sb mamas will know what I mean lol)  She has come to be a very good friend to me, and I have spina bifida to thank for that.  Without our children having it, we wouldn't have met. 

After our last playdate, I suggested she come to Donegal, were my parent's have their mobile home and last weekend her, her partner Neil, Katie and Jamie did just that.

We had a fantastic time at the farm,

   
Jamie got along brilliantly with Caitlin (I can see the romance already lol)

Katie doted on Caitlin. 

Caitlin loved having her friends to play with,

Us Mummies with our babies,

Chillin out at the carvan,

All too soon, it was time for them to go home, but we all had a fantastic time.  Our two kiddos might have spina bifida and hydrocephalus, but that sure didn't stop all of us having a fun filled weekend. 

New walker!

I'm always saying how when I'm feeling down about Caitlin's progress, she surprises me.  Well, she's only went and done it again!  A few days after I lasted blogged, we went to her physiotherapy appointment and her physio thought that Caitlin was ready for a Kaye Walker!  I was surprised, she hadn't had her front walker for very long, but her physio thought it was limiting her and that a Kaye Walker would benefit her much more.  She wasn't wrong.  I was panicking because a Kaye walker goes behind Caitlin, so she doesn't have it infront of her, like she did her front walker.  So if she lost her balance, she's going to go crashing into the floor headfirst.  But, this walker has swivel wheels, which makes it much easier to turn and get around with.  I held my breath as the physio give it to Caitlin to try out and Caitlin immediately grabbed the handles and off she went.  Since then, she has come on leaps and bounds.  When she leans back on it she can lift both hands off the handles and stand by herself, she can hold on with one hand and do one of her cute little wiggly dances, she's learning to turn it, though she does get a bit too excited and goes flying with it into things!  So far, she is loving it, she isn't afraid at all.  It's helping her confidence.  She loves it that much all she says is "Wee walk?"  I even heard her asking to go for a walk in her sleep lol.  Now that's dedication.

I took a video of her with it while we were on our holidays.  It shows her getting stuck, but that's happening less and less, and everything that she is doing with it. She even shows off a new thing she's learnt, patting her leg while calling the dog Jack, to get him to come to her.  She's a smart cookie.

Enjoy!

I have lots to write about our holidays (we just got back from a couple of hours ago,) but right now I have a tired little girl to put to bed, but there is lots of new pics to come!

Walking and Wheelchairs.

It's only now that I am starting to even allow myself to consider that Caitlin may need a wheelchair when she gets older.  I don't know if I was in denial, but I refused to think about it, convincing myself that she would be strong enough to walk.  More and more, people are asking me, "But she will be able to walk eventually?"  I always answer yes she will, but now I'm starting to think about what that means.  We have been told she will be able to walk for sure.  But that doesn't necessarily mean she's going to walk independently, with only her Afo's for support.  I have kept telling myself her Afo's are all is that she is going to need, maybe it's my way of coping with it all.  But recently, I'm starting to doubt that.  Caitlin is 20months old in a few days and can't stand on her own.  She walks with her walker, but her legs tire easily.  We've had the walker a couple of months now, and she's doing great with it.  She's learnt not to let go when she's finished with it (that resulted in a few nasty falls), she takes steps with it, and can walk with it for about 5- 10 minutes now, and stand holding it for much longer. But I can see how it takes it out of her, it tires her out.  It's not fair that she has to put so much effort into walking - something most of us take for granted.  I am starting to struggle to see how she can go from this to walking independently all the time, without needing crutches or a  wheelchair.  I know those with spina bifida say wheelchairs give them freedom, and independence.  But I struggle with it.  When I imagine Caitlin when she is older, I don't see the wheelchair.  I don't know why, I just imagine her playing with her friends, being able to do all the things they can do.  I just thought it would take more time for her to achieve those things.  But I thought she would be able too eventually.  Maybe I'm being unrealistic.  Maybe it's starting work at the daycare centre thats got me thinking more and more about this.  She'll be moving into the toddler room in four months and I don't know how she's going to cope with it, all the toys are on tables, and I don't know how long Caitlin will be able to stand at them to play.  There's chairs, and Caitlin can sit on them, but the kids tear around from table to table playing, and I worry about how she'll feel if she can't keep up.

I think now, she's going to need to use a wheelchair for long distances at least.  I don't think her legs are strong enough to cope with walking for long periods of time.  It's a hard thought to bear.  I'll probably come round to it as she gets older, but right now, it makes me very sad.

This waiting and seeing can be tough.  I convinced myself that Caitlin would be walking just with her Afo's by the time she is 2, because the two children I know who have spina bifida at her level were walking independently by the age of 2.   I know every child is different, but I had hoped and willed Caitlin to be in the group that wouldn't need crutches, or a wheelchair.

Having said that, Caitlin as always is the happiest and most content little girl.  Our ASBAH ( Assosication for Spina Bifida and Hydrocephalus) advisor was out on Friday and couldn't get over how talkative she was, and said she would very much doubt she would need a special needs teaching assistant when she starts school.  She thinks she will just need a general assistant just to cath her, until she learns to do it herself.  She was also very impressed at Caitlin using her walker at such a young age.  Maybe she will get there....but if she doesn't, as long as she's happy, I can cope with it.

Here are some pics of our trip to Tropical World at Letterkenny yesterday.  We left our camera in the car, so had to use my phone to take pics.  Here's her looking at the birds...

Fasincated by all the butterflies flying around her,

Laughing,

Showing off how good she's getting at standing,

Looking at the rabbits, (I love how she's getting those lovely curls)

Caitlin even loved the tarantula!  I on the other hand, did not.  At all.  I stayed well away while her Daddy showed her it.  She was excited to see what she calls the "spidey".  I think Caitlin's gonna be a vet or do something that involves working with animals when she's older.   She absolutely loves animals and is so good with them.  She even tells people to be gentle when they're petting our dog lol.  She's so much fun and she's my pride and joy.