Caitlin has the most severe type of spina bifida, known as myelomeningocele. This is were the spine does not close, resulting in the spinal nerves being exposed and damaged. Caitlin's spine opened at L4-L5 and so from this point, her nerves are damaged. This is a good diagram of the spine, showing were the nerves are and this shows exactly what nerves are affected for Caitlin - her legs, feet, bowel & bladder.
Most children with spina bifida also develop hydrocephalus, (excess fluid on the brain). Caitlin already had borderline hydrocephalus when she was diagnosed with spina bifida at my 20 week scan. The hydrocephalus increased continually throughout my pregnancy and was classed as severe from around 29 weeks gestation. I feared brain damage. I needn't have. She's a super smart kid and so far isn't showing any delay or learning difficulty whatsoever.
Chiari Malformation II is also commonly found with spina bifida, yet many people don't even know their children have it because out of all the children with chiari malformation II, it is only symptomatic for 1 in 3. When Caitlin was diagnosed with spina bifida & hydrocephalus we weren't told she also had chiari malformation II. I read it in the reports about her. Then I googled it. That was a bad idea!
The description of Chiari Malformation II is as follows,
"Type II, also called classic CM, involves the extension of both cerebellar and brain stem tissue into the foramen magnum. Also, the cerebellar vermis (the nerve tissue that connects the two halves of the cerebellum) may be only partially complete or absent."
That scared the crap out of me. It was made worse by the fact the doctor had noted in Caitlin's "abnormality report" that the cerebellum appeared to be absent. The cerebellum plays a huge role in motor function so you can imagine how devastating this all was. It turned out that Caitlin's only symptoms from Chiari Malformation is that she has a stronger gag reflex and so will gag easily on certain foods.
Writing about this always brings me back to that dark time in my life... the worst days were following diagnosis. But from the moment she was born, she has been intent on showing us what a little star she is. I would be lying if I said it's been all rainbows & roses but my pregnancy with her would not have been anywhere near as awful as it was if I had have known what Caitlin would really be like.
Children with spina bifida tend to need alot of surgeries throughout their childhood & adult life. Caitlin's had 7 major surgeries so far. Her first spinal surgery at 2days old and her first brain surgery at 2 weeks old to insert a shunt. Five more brain surgeries to repair shunt blocks along with countless scans, tests, appointments, physiotherapy sessions, the list goes on. Her bowel & bladder remain healthy due to regular catheterization & daily medicine. To read that sounds like she suffers, but she really doesn't. She doesn't know any different. Getting her catheter done is just a part of a nappy change. She takes her medicine with no complaint and likes to make a face, then she smiles and shouts "Gisgusting!" (She means disgusting of course lol)
She hasn't had a surgery in over a year and hopefully that continues for many more years.
So that's the spina bifida, hydrocephalus & chiari malformation II part of our lives. Yes it's a part of our every day lives and always will be but it certainly is not our whole life.
October is a special month for other reasons too. It's the month were me & Caitlin's dad met. On the 13th of October 2005 he asked me to be his girlfriend. Five years later he asked me to be his wife. Caitlin was with us when he popped the question and luckily was on her best behaviour when her daddy was proposing! Fast forward 2 years and we are a couple of weeks from having our second daughter (due at the end of October!) We are saving for a perfect wedding which we plan to have 3 years from now on the 10th anniversary of the day he first asked me out. Our girls will be 5 and almost 3 years old. It's the dream!
Life at the moment is pretty chaotic. Caitlin started nursery school last week. I went with her the first couple of days and her teachers said usually mums would stay with their kids for a couple of weeks but as it was Caitlin settled in so well that she's been without me the past couple of days already. She does cry when I go to leave (makes me feel so so bad!) but she's always fine after a couple of minutes. Her teacher sent home pictures of her first week at school yesterday. She met one of the helper dogs so there were pictures of her giving the huge Labrador hugs (kid is such a animal lover), pictures of going on a walk to collect leaves, of her baking & of her playing in the ball pool. She comes home every day saying she had lots of fun. The only bit she doesn't like is when the nurse does her catheter. She tells me that she tells the nurse she wants her Mummy but Mummy doesn't come. Talk about making me feel like the world's worst mother! I had expected her to be afraid of the nurse after all her experiences with the hospital but I'm hoping with time it gets easier for her. She got the school bus home on Wednesday and this morning the bus collected her for the first time and took her into school. She didn't cry as I got off the bus but she did look a bit frightened sitting with all the big boys & girls. It's easy to forget she isn't even 3 years old yet. Took me everything not to cry as I waved her off. But when she'd gone I couldn't help shedding a little tear or two!
The only negative is her school is quite far away, so we've been leaving shortly after 8am and now the bus will be collecting her at 8am. She is very tired this week (as am I!).
For the first time since she started she didn't want to go into nursery school this morning, she asked could she just stay at home and play with her toys. I think she's just a bit exhausted. It's a big adjustment, she's used to us having our slow paced mornings at home, now she's getting woken, getting ready straight away and out the door a half hour after she first wakes up.
I'm finding it hard to adjust too. I'm trying to get her into bed earlier, but by the time her dad gets home in the evenings, she wants to spend some time with him which doesn't leave much time for bath time, PJ's, stories then bed. We're also trying sitting her on the toilet before bath time each night too and for anything to actually happen on the toilet it takes at least 15mins. It's been impossible so far to get her into bed by 7pm when she really needs to be in bed now for around that time. On top of that, I always did her legs and feet stretches in the morning and we practiced walking up and down the stairs each morning too, to help her straighten her legs out more. Now I'm trying to remember to do it in the afternoons and feel guilty when I forget to do it. And she got glasses last week. Its a struggle trying to get her to wear them. I'm also conscious of needing to work on her independent walking as well. We'll get there, it's just alot of changes at the minute and I haven't quite figured out how to get it all fitted in to the day - and then I'm afraid of muscles getting tight/eyesight getting worse because I'm not doing enough with her. I have no idea how I'm going to keep it all up when there's a new baby going to be arriving in a couple of weeks and the thought of juggling it all when I go back to work next year - I'm not even going there lol. I think I'm thinking too much. I'm also nesting like crazy. Rearranging the bed linen closet, sterilizing toys & clearing out every wardrobe/cupboard in the house is among what I've had this urge to need to do the past couple of weeks.
Finally, my friend Astra offered to take some pictures of us after listening to me whinge about not having many pregnancy pictures and wanting some pics of the 3 of us before the baby arrives. She is a talented photographer - I love the pics!
My beautiful daughter :)
Family...
Ditching the walker and walking to me :)
Feeding the ducks...
Hopefully the next set of pics I post will feature a certain new arrival...I can't wait!!
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