Feb. 10 - Happy Bubbles

I saw that my last post was Feb. 1, and it was a rather optimistic, happy post.  Well, 2 hours after I hit 'publish', Ryan pulled his feeding tube out. That was Friday night, so all our regular 'clinics' to go get the tube replaced would be closed for the weekend.  That meant an early morning trip to Sick Kids Emerge.  Sadie and I had planned on going to visit my big sis in Guelph... didn't happen.  Luckily, not many people go to Sick Kids at 8 am on a Saturday morning, and we were there and back in 3 hours, which NEVER happens, not even with a scheduled appointment.  The moral of the story??  It's always the same old chiches... expect the unexpected, life is a roller coaster, when there's an up there's a down... Which is actually a good lead up to my next point.

It was my "birthday week" as my family affectionately refers to it, so there were some 'loosely made' plans.  Our family get together on Sunday was actually quite successful as far as having 'company' (my sister and parents).  Kids were happy and everyone eventually got to eat.  Tuesday Scott and I had a lunch date.  Wednesday (my real birthday) was actually great (minus some news from our ENT appointment which I will get to shortly).  I made it to spin class, ran out quickly to one of my favourite stores in Aurora, had a pancake lunch with mom, Martine, and Sadie, then headed down to Sick Kids for ENT. The appointment was at 4 pm, which would have put us smack dab in the middle of rush hour to get home so we made our first 'dinner date' with Ryan in tow.  We went over to see our old NICU nurse/Ryan's fariy godmother at her new condo.  It was the perfect place to go with him because she knows him well and just 'gets it' and also because by the time we were done dinner, there was no traffic and we flew home and he went straight to bed. 

I guess I should write about our ENT appointment because one day I'll look back and remember that it was my 34th birthday when the doctor told me that Ryan will most likely need hearing aids and possibly cochlear implants.  His hearing has been a big question mark since we were in the hospital.  I've written a bit about it, but not much a) because it's stressful and b) because there are no concrete answers as to what is going on.  There was talk of a diagnosis of auditory neuropathy, which I think I explained in a previous post.  The ENT doctor seems to think that it might not be the case.  He 'thinks' Ryan might just have a more 'classic' hearing loss.  The 'good' thing about that is - with classic hearing loss, it can usually be corrected with hearing aids or cochlear implants, whereas if it was ANSD, hearing aids don't often work.  So - right now, we are to continue with our AV therapy (which is actually working) - If Ryan hears a sound, he is starting to look toward it.  We will have regular hearing tests that will look for behavioural responses (i.e. him looking toward a sound).  Once he reliably cooperates on these kinds of tests, the audiologist will be able to narrow down which sounds he can hear, and at what level, so that she can try out a hearing aid. 

I took this news surprisingly well.  It hurts my heart to know that this will cause him a lot of frustration throughout his life, but in a way, I'm glad that there is something that can be done to help him. The thing that keeps me going is the fact that he is still smiling and laughing - that means he's still 'enjoying' life.  Back in the hospital when we were debating on continuing treatment or not, one of our main concerns was 'will he be able to experience happiness and enjoyment'.  So far so good.  Unfortunately it's hard to capture the moments on camera because, as with most babies I've met - as soon as they see the camera they stop doing what they're doing and stare blankly at it.

This post is long, but it's been 10 days, so too bad ;-).  We've had some ups and downs with our 'nursing staff' this week - I won't get into the nitty gritty because it's not worth the time - but the bottom line is that good homecare nursing is hard to find.  I've found myself in a manager's position.  I am training and managing the nurses more than the company they work for.  There are 4, sometimes 5 nurses coming to care for Ryan -myself, Martine, and Scott as well.  That's a lot of cooks in the kitchen.  I'm working on finding ways to effectively communicate with everyone, and am trying to learn to be 'boss' and 'mom'.  It's HARD! Especially when things happen after 3 hrs of sleep... there's no 'boss', just a really tired and grumpy mom.  I feel I shouldn't have to spend so much time dealing with the nursing stuff issues - and I've made that point clear to the supervisor, so hopefully things will change soon. My efforts need to be focused on the kids, the house, and occasionally myself (gasp!).   All negativity aside, we are SUPER FORTUNATE to have help provided by CCAC because without it I don't even want to think about how we'd be dealing... I should just shut my mouth right now.

The title of my post is 'happy bubbles' because every time I am happy about something, the my mind always starts thinking about how the happy bubble is going to burst.  Often it's in the form of a tube being pulled, bad weather causing a get together to be cancelled, illness, nurses not showing up, etc.  I'm not one of those glass half full people and I probably never will be, but our journey with Ryan is teaching me more of how to roll with the punches.  I still revert to my cry about it- sulk for a while - then move on pattern, but I find that I'm doing it a little less *stop laughing mom* and am (fingers crossed) starting slowly to develop a bit more of a roll-with it attitude.  My mom tries to remind me that whatever will be will be.... sometimes it's easier said than done, but at least we try.