What's going on with Caitlin...

I wish I could say what's going on with Caitlin but I just don't know.  Nobody does.  It's been two months now since she has independently walked.  The theory that she's regressing because of her sister being born is becoming less likely as time goes on.

 We had a neurosurgery appointment on Tuesday and I told him the facts. That her knees are bending more when she bears weight on her legs, but she's still walking well with a walker, but not attempting to take any independent steps anymore.  She just says, "I can't, I'll fall."  Her physiotherapist called on Monday and said she has noticed she has definitely lost some strength, that she's pulling up onto her feet using her arms more rather than her legs.  But she can't tell if it's down to her syrinx's on her spine or if she decided she didn't want to walk anymore and because of this she has lost strength through not maintaining independent walking.  I expected to be referred for an MRI at the appointment on Tuesday so when the neurosurgeon said he was admitting her I have to say I was shocked to say the least.  He felt the shunt needed to be looked at although he feels its not her shunt, either do I.  But he wanted to rule out shunt problems before he goes anywhere near her spine.

So we're going down to the hospital to be admitted on Sunday.  They are doing a ICP procedure (Intercranical pressure monitoring) on Monday morning.  This involves drilling a hole in her skull, inserting a pressure monitor & hooking it up to another monitor.  So, my kids head is going to be connected to a monitor for at least 42 hours.  How I'm supposed to get her to stay in her hospital bed, not let her move around much and stay happy is definitely going to be a mission! It's an invasive procedure and I have my doubts but the neurosurgeons know what they are doing and they reckon the pressures in her head could be effecting her ability to walk - hence why they're going to monitor the pressures for a few days.  If it comes back with a problem, she'll need another shunt revision.  If it's clear we move on to an MRI of her spine, to check the syrinx's to see if they've got bigger or smaller, to see if her spinal cord is being further damaged by them.  If that comes back clear I imagine we will get to go home, if it doesn't we're looking at detethering surgery.  I don't even want to go there yet. Oh, and they want to squeeze in a few more tests while we're there to check if her bladder & bowel are working as they should!

So right now I'm trying to organise, plan, prepare.  It's going to be a tough week on everyone especially Caitlin.  Aoife is just 3 months so I'm not exactly thrilled that I'm going to be apart from her for so long, but Caitlin needs me more.

After 2012 being such a fantastic year, Christmas being absolutely amazing, I had high hopes for 2013.  Hopefully it is just a rocky start and it will get better.

On the night we found out she would be admitted, I went to bed feeling very sad for my baby.  Then Caitlin's Daddy sent me a text of 2 poems, both for Caitlin.  I shared one on Facebook, the other I'll share here...

Her smile brightens up the darkest room,
Her eyes shine bright against the gloom,
Her laugh fills out hearts with such joy,
She gives us all so much to enjoy,

The problems she has are so unjust,
Yet she carries on and so we must,
Wear a smile whilst holding back tears,
Remain strong to calm her fears.

Her strength to recover is much to admire,
We must remember that as we tire,
That it is our angel who is in that bed,
Looking for her friends Harvey and Ted.

Soon she is back making a mess,
Wearing her masks, pretending she's Jess,
Playing with toys and singing her songs,
She forgets the problems,
Lets hope it's for long.

Please keep Caitlin in your thoughts and prayers, that we find strength to get through the next week with our family separated and our big girl having to go through all the tests, needles & fasting for surgery or surgeries & for her recovery.  Let's hope we get some answers.