Tuesday, 12 November 2013

I've finally met my son!

I'm not sure who I was kidding when I said to myself, "Sure I can maintain a regular and active blog plus be a Mom to 2 kids under the age of 4 years"! HA - perhaps I was a little delusional but hey sometimes that's one of the best ways to get through life right! RIGHT?!?!

So I unintentionally took the summer (and half of fall) off from blogging. The whole time I swore to myself that I would get back at it once Quin started kindergarten. I figured I'd have a couple of hours twice a week of a little down time while Ryan napped and Quin was in school - perfect time to blog! Or perhaps a perfect time to do a little cleaning, organizing, de-cluttering, fold a mountain of laundry - and yes a little time to sit down to catch up on one of my PVR'd shows *guilty grin*! In between all that though I was changing a poopy bum. Ryan has taken to pooping mainly around nap time which of course either wakes him up or keeps him from falling asleep because he's waiting for it to come! This kid loves to poop let me tell ya! But he also LOVES his down time so even if he's not napping he's at least chilling in a dark room resting his vision and his body which is very much needed when you wake for the day between 5:30am and 6:30am.

It has been over 5 months since my last post - yikes! Sorry to those that follow Ryan's story! I've been super low energy due to (without this sounding like a pity plea) being a special needs Mom. My 37 year old body feels more and more like a 97 year old body. My back, hips and ankles have all been feeling the strain of lifting and carrying Ryan's 36lbs...40" body. I've been checked out and xray'd but nothing showed up with is good but frustrating because I'd like an answer/solution to my aches and discomfort. Thankfully Ryan is starting to get a little more mobile. Which you can see here - it is so incredible - I really have no words so just watch!!!

This here he did just a few weeks ago - AMAZING! Once he was upstairs he climbed up onto the stool in the bathroom Quin uses to brush her teeth and wash her hands! Crazy!

When I left this blog off last time Ryan was going through a screaming, sad, angry phase. That in total lasted about 5 weeks. Once it resolved he managed to get through the summer months his typical happy, easy going self. He even started to make some new sounds!

Unfortunately, in mid September into early October he went through another very bad fit. This one lasted only 3 weeks but it was 3 weeks of constant screaming and sadness. The ER chalked it up to poop back up which the pediatrican disagreed with - so fun when doctor's "agree" on things...ggrrrr! Myself and those close to him (aka family and his therapists) feel he went through a growth spurt. He definitely felt bigger but what was scary for me was that he became quite floppy and much more unbalanced and uncoordinated than usual. I was so afraid it was his brain going batty! I'm certain though it was a spurt as (knock on wood) he's been awesome since!

Since the last post Ryan has had 2 EEG's. Things like the below video is what keeps happening. To some it may look like "normal" behaviour. To other's who know epilepsy may say "huh, yup for sure that's seizure activity". His EEG's have come back clear of seizures but he's never had these episodes while hooked up so it's very frustrating not knowing what they are:

The good thing is that he hasn't regressed. At least not physically as the walking video at the beginning of my post confirms. What is worrying me though is that he hasn't babbled like he did above in almost 2 months now. He seemed to be on a roll but now there is nothing. What I'm hoping is that his brain is so busy learning all these new physical skills like balance, walking etc...that it needs to take a break from the verbal part for a bit. Another factor could be that his left tube came out of his ear and his ear drum is slowly filling back up with fluid which could be affecting his hearing which could affect any noises he wants to make. We see ENT again early in December to see how things are looking (his right tube is half out as well).

What has been amazing and has also kept me from freaking out too much is that he is becoming much more social. No matter where I am, Quin is or Jeff is he always seems to come to us. What I mean is that I could be in the kitchen doing something and he'll scoot right into the kitchen to "say hello". He'll just sit there at LOOK at me...it's so very surreal! I finally feel after all this time that I'm finally meeting my son. Let me tell you - it's an intense thing to experience.

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