This month has been a little crazy busy....actually the last few months have been so needless to say my goal for the spring/summer is to find a nice balance. We've just had so many things going on. Jason and I decided it was best if I picked up to full time and he be a stay at home Dad during these next couple of months as carpentry work is few and far between at this time of year and when summer hits he's working 16 hour days/ 7 days a week. So its worked out great and the big and little men seem to be enjoying themselves immensely. Jason is truly great with Alistair though. He's consistently doing physio with him and feeding him scrummy meals. For instance, the other day for supper Alistair some squished up avocado on one side of the dish and on the other was cream, mashed potatoes and PEANUT BUTTER all smushed together! LOL To be fair I have to tell the rest of the story...alistair has had a nasty snotty head cold prevent him or making him very disinterested in food. So to no surprise he lost a shwack load of weight. So we've been making power meals to get those pounds packed back on as he really isn't the biggest child on the block AND it seems to be working. Anyhow...so yes this mama's workin a bunch in the Emerg here in town and there rarely seems to be a mellow day in that place. If anything we're lucky if we get all our breaks. But in the same breath I do like working there.... so yippee for me. But its been a bit of a shocker for my bod and brain to go to full time from a nice mellow part time schedule. Anyhooo then on top of it early in the month it was time again for Alistair and I to head on south to Vancouver for more checkups. Thankfully, Alistair and I were welcomed in to Kim and Grady & Don's home once again. I say thankfully as it is a bit of a medical overload of information, tests and specialists and even though i attempt to brush it off Jason does say it always takes me a week to get back to my old self. I just get a lot of worst case scenario, investigations, and of course it all gets the brain going and i don't think the specialists really realize how we as parents hang on every word uttered out of their mouths! First of all we saw the opthamologist, the plastic surgeon, the occupational therapist, the neonatology team, the neurologist, and the geneticist all in ONE day. Generally it has gone ok in the past but I think with Alistair being a little older he's more aware and not so content to be disrupted out of his normal daily routine. PLUS to top it off we started with the opthamologist and he stuck drops in Alistairs eyes to dialate them and WHAM Alistair went into overstimulation mode and then of course thats what all the specialists got to assess was Alistair hyperextending his limbs constantly, being irritable, and blah blah blah. So ya and what Mom likes to see their kidlets in a overstimed and irritable mood? So and then I was REALLy hoping to find out some information from genetics this time as we would like to extend the family at some point in time in the not too too distant future. But that started off with the geneticist not having results from the blood work and basically it looks like it got lost, then he proceeds to tell me that we have a %25 chance of having another kidlets with similar issues, and then he says that he doesn't really know what syndrome alistair has but the closest he can figure is one that only three kids have in the world but they all have a small upper lip and a drop (hypotonic jaw) jaw which Alistair doesn't have....anyhow I guess the syndrome remains nameless...but the geneticist finalizes it by saying but we won't go there at the moment because the outcome of this syndrome isn't good.! ACK well then WHY THE FLYING FLIP would you tell a mom that. RRRRRRRRR Sorry but you know I actually like this geneticist BUT they don't get what that does to a mom. I honestly nearly puked. geeezeeee...... Anyhow so thats why it was soooo good i wasn't staying in some hotel room to stew over that. Instead I got to go back and hangout down town Vancouver in my friends apartment looking over the ocean and eatting incredible dinners and drinking scrummy red wine! So ya it took me a bit to normalize and that just takes a bit to get that out of your brain or at least not on the forefront. I have to admit it still bothers me but what do you do? well i know what i do...i just work at "normalizing". Anyhow thankfully for my brain mechanic, Jason, he seems to be able to talk me into a better place and keep me level and well realistic. So as i've said a many a time if it weren't for his level headedness I wouldn't beable to cope as well as I do. yahhhh Jason! : D
Ooo here is a picture of Alistair eatting one of Mummies lazy suppers : a piece of bread slathered in peanut butter and soaked in cream.....Mmmmm
Well wow did I ever go on a tangent. I started about balance and never really finished that convo! LOL But basically I also have a lot of time and effort that I put into the Northern BC Children & Families Hearing Society which empowers deaf and hard of hearing children and families. We're putting on a mini immersion weekend here March 4 &5. It'll have parallel activities for both parents and children with all sorts of good stuff in there. If your keen and in town you can always E-mail pgdeaf@telus.net for more info!
In addition, to that we've been moving nice and casually into our home in town. It really is nice and like Christmas all over again. I'm going through boxes Jason packed 2 years ago and its just fun to unpack and see what we own that I totally forgot about!Anyhow, last but not least I just want to make a shout out to a family that wrote a little note on my blog and has just headed down to Vancouver to have their little girl who has also been diagnosed with a congenital diaphragmatic hernia.......
So you know I always hated the word "journey" in nursing school but truthfully it really fits in so many circumstances and I think this word fits for you and your family. You've embarked on a journey and you don't know which roads your going to go down, who your going to meet, and what experiences your going to have. Sometimes not knowing EVERYTHING all at once is a good thing. It allows you to cope in stages and gain strength along the way. But one thing forsure is you'll know your supports and others will come out of the woodwork that you least expect. So during this challenging time of unknowns this is when you hold those supports close. Lean on them with ALL your weight when need be. Allow yourself to laugh, cry, and just be in the moment. I wish I could tell you exactly how its all going to turn out but I can't. Just remember to take care of your mental and physical self as you will be in turn be taking care of your little girl.
Take Care and if at anytime you would like to banter back and forth through E-mail I would love to hear how you and your little girl are doing and I'd be happy to be a support! jj_juels@hotmail.com (((HUGS))) Julie