I think I mentioned before that Caitlin got an MRI scan done in July to check for tethered cord. I honestly wasn't worried about it because she wasn't losing any function but I began to feel a little uneasy as the weeks turned into months and we hadn't heard anything, despite several phone calls I made to the hospital. Eventually, a couple of weeks back, Caitlin's urologist's secretary rang and said the results had been looked at and Mr Bailie wanted to change her appointment from December to November and to make sure her neurosurgeon was there. Naturally, I went into panic mode. I mean, if there was nothing wrong why would he move the appointment forward and want Caitlin's neurosurgeon there. I thought that if her neuro was there it meant surgery was needed. I ended up ringing the secretary back and telling her I needed a copy of the report because I was going out of my mind worrying about what had been found. Two days later I arrived home to find the letter lying in the hall. I ripped it open and scanned through it quickly, while Caitlin was busy trying to take the letter off me. I skipped to the conclusion which said she had spinal dysraphism, tethered cord, dermal sinus tract and extensive syringomelia. I was so shocked that all this had been found. I knew a tiny bit about tethered cord but the rest may as well have been in Chinese, I'd never heard of any of it. I set Caitlin down in her playpen and went straight on Google trying to find out what I could and what I read terrified me. Syringomelia can destroy the spinal cord. The rest of the words that she had been diagnosed with I couldn't even find out anything about them. All I could think of was she was going to need surgery and as some of the syringomelia is at the top of her back, if the surgeon nicked the wrong nerve, she could end up paralysed from the chest down. I have to admit I thought to myself, why my baby, she has been through so much already, why can't she just enjoy being a baby for a while.
Luckily, my friends from Spina Bifida Connection and the Spina Bifida parenting group on Facebook told me they had been in similar situations and their children hadn't needed surgery. So I'm hoping and praying that Caitlin won't need more surgery any time soon. Our appointment to discuss the MRI results is next Tuesday and I have already started to write out my list of questions. Caitlin's doctors must hate it when they see me coming, I ask them everything under the sun! I'm hoping they have some good news for us but I'm getting more nervous about it as the appointment gets closer.
We also finally started the indwelling catheter. It took nearly a week to get the supplies, I got the wrong stuff sent out so many times, I was going mad! When we eventually got everything and did it, it all went fine, until the next day when I was catheterizing her as normal and blood came out. I freaked out, thinking I had damaged her with the indwelling catheter and rang her nurse who said that shouldn't be happening (that helped calm me down) and that I should ring her continence nurse who of course wasn't in. She rang back a few hours later and told me it was quite normal as long as there wasn't much blood, which there wasn't, and that it was probably because it was a new thing that was in her bladder for so long, and that it should settle down. Thankfully, there's been no blood since and I needn't have worried about Caitlin hating it, she thinks its a toy!
We also went to Dublin for the weekend to visit our family down there, and Caitlin had lots of fun staying with her Godmother Trisha, and getting fussed over by her big cousins.
We're really looking forward to Caitlin's first Halloween and I will post some pics of Caitlin in her costume as soon as I can.
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