Thursday, 21 June 2012

2 months worth of updates!

Ok so I admit (again)...I suck at blogging! I has been almost 2 months since my last post and THAT is highly unacceptable and will not happen again! It has obviously been a very busy couple of months (hence the delay) so I will try to condense all of Ryan's happenings into one "little" post! Wish me luck...

First here's a few pictures:

Happy boy!

Standing on grass for the first time!

She loves her brother...really she does!!!

Chillin' in his gait trainer from Erinoak Kids!

Quin's first soccer "game"!

So when I left off it was mid April and Ryan was really getting into the swing of things with coming up into a sitting position. He's mastered this feat and it's impossible to keep him down now! Problem is that even though he can get up nice and easy...he falls down nice and hard. He's still not able to get his arms and hands out to catch himself so he pretty much hits the deck like a ton of bricks unless someone is there to catch him (which isn't always the case).

April 18: Sedated ERG at Sick Kids. Ryan barely slept at all the night before so the sedation hit him very quickly and they didn't even use all the drug. He ended up sleeping for 6 hours off and on after the test which of course screwed up his days and nights again so back on Melatonin he went. And so began the wait to find out if his retina's are still suffering damage from his seizure meds.

April 21: My awesomely sweet and strong willed Quin turned 3 years old! For more than half her life she has dealt with all the insanity that comes with having a sibling with special needs and I fear it's really starting to get to her. I won't go into detail or over explain things as I tend to have a habit of doing. All I can say is she is a very intuitive, sensitive and brilliant little girl.

April 22: I walked into Ryan's room to find him sitting up in his crib - amazing and very freaky to see!

April 23: After almost 15 years, Jeff has officially said "see ya later" to shift work. He has taken on a new roll (still within "the force") that allows him to work Monday - Friday day time hours! and so is he for doing it! It's made life much less stressful around the house for the kids to have both of us around every night and every weekend. It gives us all (especially Jeff) a lot more structure to our lives and enables us to be a "normal" family! Something we've just started doing (early June) is that he is doing 1 "afternoon" shift a week so that he can take Ryan to one of his PT appointments a week. This gives me some Mommy/Daughter time with Quin and she gets to see someone other than me take Ryan out the door for this or that appointment.

April 29: Sat in a shopping cart for the first time (thanks to his Hugga Bebe)!

May 2: Enjoying his visually stimulating Pack N Play!

May 7: I took Ryan to see the pediatrician as he had been having massive meltdowns once again. Lots of very intense, loud and prolonged screaming fits. Thankfully he was in the middle of a meltdown during our appointment...sure it made it difficult to have a conversation but at least he got to see it first hand. He said he would get in touch with the neurologist (because once again god forbid I should be able to get the guy to talk to me himself). I did call both the neurologist and endocrinologist and was told to 'start' with the ped...sigh.

May 12: Ryan had a 30 minute "stoned" episode. I videotaped some of it once I snapped out of my heart stopping, sickening moment of panic and sent it off to his neurologist along with a very detailed description of what had happened. I swear it seemed like a seizure to me (I'm still convinced something was up) but the neuro said he just looked "tired". Fine...ok. The only reason I'm not banging down their door is that it hasn't happened since and he was a little tired so maybe...

May 14: Tube surgery follow up and hearing test. We discovered that Ryan's left tube was blocked with leftover fluid from the surgery and his ear drum had filled back up due to the blockage. This probably explained why he was collapsing so much and being extra off balance during his PT sessions. His therapist and I weren't sure if they were "drop attack" seizures (yes, it meant another call to the neurologist). The ENT doc gave us some antibiotic drops for his ears to help break up the fluid and sure enough 10 days later he was all cleared out and no longer dropping to the floor and falling. STRESS!!! The hearing test he needed done didn't go so well. Ryan is very developmentally delayed and doesn't respond to a lot of things the way normal babies and toddlers do so they sent us off to another hospital for a more specialized test (basically all that meant was there were 3 people doing the test instead of 1). That too was a bomb so they said lets give him more time to develop and see what happens. We go back on November 14. I know he can hear so I'm not 'overly' worried but I guess it's a question of how well. Also, on this day Ryan had a PT/OT session before the doctor appointments and then right after the doc appts he had to go for his standard (every 3 months) blood work. I won't go into the mix up that happened at the hospital with that one but I will say that Ryan's lovely pediatrician called me on the long weekend from his home to let me know that his blood work came back fine. I seriously love that guy and pray he never ever retires!!!

May 15: Quin tickled Ryan's feet saying "tickle tickle tickle" in her sweet and excited little voice. As happens a very large percentage of the time Ryan did not respond or react...Quin turned to me looking totally dejected and so innocently said, "He's not working". BREAK MY HEART.

May 17: Ryan got a piece of cheese into his mouth!!! Not sure if it was a fluke but it really did seem like he was working hard to get it in there!
Here it is as it was happening!!!

May 29: Finally got the word from the doctor at Sick Kids letting us know that Ryan's retina's are NOT showing damage from his anti-convulsant Vigabatrin (as previously reported after his January ERG). Such fantastic news!!!

May 31: Quin helps Ryan learn how to use his gait trainer. Since he doesn't have the vision or muscle power to understand the concept she's giving him a little boost!

June 3: Both of our cats got out of the house at night (we didn't know until the following morning). I opened the door and Clyde came running in...Sully remained missing for 24 hours. Turns out he was under our neighbour's back porch. Here he is the night after he was found totally content in my lap! Punk better not ever do that again - he added just a few more grey hairs to mine and Jeff's head!

June 5: The family doctor prescribed a topical antibiotic for the back of Ryan's ear. He constantly plays and pulls on his ears (hello autism alert - he's got LOTS of autistic traits...LOTS) and gets a little too rough at times. His left one got mangled and it ended up infected but quickly cleared up thanks to the antibiotic.

June 6: This day started off great as it was Quin's 2 year anniversary of walking and the 1 year anniversary of when Ryan tracked an object for the first time. Then during breakfast Ryan had a strange episode (wasn't the first time) where his face got all twisted and contorted. Obviously I instantly think seizure but I also thought Tourette's. I got a little video of it and sent it off to the pediatrician and neurologist. The ped said he isn't worried about what he saw...still waiting to hear from the neuro - shocking I know. If the video doesn't show up in the blog here is the link:

I'll end here and get to work on the roller coaster early/mid June updates - it's been a doozy!