We all know Caitlin has had loads of problems with her shunt. She has syrinx's in her spine, tethered cord and we've been waiting for an MRI to be done for months to check to see if the hydrocephalus and Chiari is all okay. All of these issues I wanted to address with her neurosurgeon at our appointment today.
We arrived early, and were told her neurosurgeon hadn't arrived yet. After an hour, the clinic was packed with people waiting to see him but still no neurosurgeon. The staff at the clinic were ringing around the entire hospital looking for him. They were continually told he wasn't there, he's on holiday! So, all of us had an appointment to see him for months, and he's on holiday. The clinic should never have been on. Major muck up by the hospital. We were all sent home. I was not the least bit impressed! So it's been nearly 7months since her last neuro appointment and she's meant to be seen every 3months. I'm getting very agitated with the situation. Caitlin hasn't been well either. Her temperature shot up on Saturday, she was very pale, grouchy, vomiting and wouldn't eat or drink. Same on Sunday and Monday. Not sleeping and gagging alot (another reason why I wanted to see neuro). Her doctor put it down to a bug. Finally today, she's a little better. Not herself, but drinking much more and eating tiny bits of food. I think her back teeth are coming in too, whenever she tries to chew she cries out in pain, poor baby.
Today, she managed a bit of custard, though she is insisting on feeding herself (and also insists on having a spoon in each hand)
It got very messy.
I was just glad she was actually eating something!
I've also been thinking a lot about how much my life has changed since I became a mum. I went from being a care free student, with no responsibilities. My life consisted of lectures, (when I bothered to go), exams, lie - in's and lots of drinking and partying! For my 21st birthday Caitlin's dad treated me to a short break in sunny Portgual were we relaxed, indulged in lots of food and alcohol, laughed and had a lovely holiday. It was there that I fell pregnant with my beautiful baby girl. We had decided to try for a baby, and we knew it took on average 6 months to fall pregnant, so I thought we'll just relax for now and if it happens, it happens. I certinely didn't expect to fall pregnant straight away! I also never ever expected to have a child with a disability.
Our lives took a dramatic turn on the day we found out Caitlin had spina bifida and since then it has continued to change. Unfortunately, I've realised that some friend's I've known for years, weren't true friends at all. A few who I would have counted as close friends seemed excited about my pregnancy to start with but when I had Caitlin and as she went through the surgeries, they didn't even send a text to see how she was doing or they kind of just drifted away, too caught up in their own lives to have room to care about how my daughter was. I was their friend when we went out partying, but when it came to the tough times, they weren't there. That was a shame. It used to really bug me, but I have a much more fulfilling life now. It might be a different kind of fun to what I was used too but it's so much better. I have also seen who are my real friends are. Friend's for life. People who have really stepped up. Those who were always there to see how we were doing, or even sent a simple text to say they were thinking of us. Small things can mean so much. I never thought that people I have never met could be such a wonderful support to me either when I felt so overwhelmed, frustrated and stressed. The spina bifida community are amazing and I am so grateful that we are never alone. So to all who read this, whether it be family, true friends, mums of children with spina bifida or people themselves with spina bifida, I want to say a huge Thank You!
