Friday, 16 November 2012

Oh hello November where did you come from?

Ok, so here's what happened...October arrived...I blinked then BOOM all of a sudden it was November...!!! I blog really well in my head - it's finding the time to sit down and type it all out that's the problem!

October was filled with all kinds of wonderful things! Quin, myself, my Mom, sister and one of my nephews all went to The Wiggles concert! It was also Quin's very first train ride (I'm still trying to figure out which she had more fun doing)!

Ryan's GI appointment came and went. All the doctor said (after making us wait over 2 hours for him) was to just keep doing what I'm doing for him. Not kidding...the entire appointment took less than 5 minutes. I was highly unimpressed to say the least! But on the bright side what I am doing seems to be working *knock on wood* so we'll just keep up with the poop meds and high fiber fruits and veggies and hope it all keeps going well for him.

A different issue for the big guy has been his pesky 2 year molars. They have been causing him grief since the summer. Two top molars (one corner of each) finally popped through in October with one more corner on just one tooth popping through now (mid November). Nothing yet on the bottom. He's been in agony off an on - so unfair. His speech therapist told me that because he isn't chewing food (he can only manage puree'd food right now) his tissues etc aren't being stimulated enough to encourage tooth growth.

On the 15th of October Mr. Tough and Tenacious turned 2 years old!!! He had a good day and enjoyed opening up his presents (with the help of his big sister Quin). He wasn't quite as happy with the cake or ice cream though!

Here's your card Ryan!

Checking out his high contrast wrapping paper!


On the 29th *drum roll please* Ryan stood unassisted for 3 seconds during his PT session!!! It was the neatest thing to see! I was super happy of course - driving home from the appointment is when it hit me how important that feat really was - BAM the tears started falling!

Unfortunately, since that day Ryan's health and mood have been suffering. I haven't been able to keep up his PT work at home and his sessions out of the house haven't been much more productive. He came down with a minor chest infection early November, seemed to go through a bit of a growth spurt and has had increased irritation and frustration from his teeth. All of that is what I hope is causing him to be a little weaker and not as willing to work consistently. I say consistently because there are the odd moments where things kick in and come together and he seems "ok". Then he'll turn around and seems to have regressed in a way. IDK..."I don't know..." - it's the term we use a lot when it comes to Ryan - lol!

Also in October - Jeff, Ryan and I had a follow up appointment with the neurologist regarding his VEEG from September. We discussed how to handle the ongoing treatment with his Vigabatrin. Do we keep him on it or try to start weaning him? To put things into perspective on how I feel about weaning him off his miracle drug...I would honestly feel as if I was pushing him out of an airplane with no parachute. The thought of him coming off of VGB makes me very very ill. A typical Vigabatrin wean takes 4 - 6 weeks. Ryan's neuro is so respectful of my anxiety that we have worked out a wean plan that will take just over 1 year to complete! I asked if that has ever been done before and both he and the neuro nurse said "NO". Ok so I'm a little paranoid. He's my "silly little bum" who I love to bits and am terrified of him suffering when he comes off the meds. It's possible he will be fine in that the Infantile Spasms probably won't come back. Most kids out grow 'spasms' by the age of 2 years. BUT the chance is still very real and very there that they will come back. I just can't let him go through that again. The other issue is that Ryan does still have a lot of activity at the back of his brain (in the Occipital Lobes). His brain is basically trying to have a seizure but is unable too possibly because of the Vigabatrin or possibly it's just not 'ready' yet. As he get's older the risk of Ryan having new and different seizures is very real and big. So for now we're going to wait on the wean (unless his next ERG on November 28th show's retinal toxicity) until his teeth are in and he's comfortable and not dealing with any external aggravations.

Enough of that heaviness...let focus on the sweetness of both my kiddo's!

In October, Quin said a couple of things that caught me off guard. One day while I was doing some PT with Ryan, she told me she wants Ryan to chase her and then she said, "He will run with me". She wants what every little one with a sibling wants...someone to play with. On the day of his birthday as we blew out his candles she asked "Can Ryan speak now?". Just when you think your heart can't break anymore... Last weekend I was a "bit" worried as I was watching Ryan...he did this weird snapping of his lower jaw thing so I instantly panic thinking it's some possible seizure about the take hold of him. Quin grabs my arm that was reached out to him and says, "Don't worry Mommy, he's just trying to give you a kiss." Really? Does it get much more innocent and sweet than that. I really need to get a grip somehow before I send Quin spiraling down into Crazyville with me!

Given all the *bleep* that Ryan has been dealing with in the last month or so he's still managing to amaze and impress. His interest in his toys is incredible. He's playing SO much and he's able now to spin around on his bum using his feet to look for his toys...LOOK for his toys - I love being able to say that! He's also making some new sounds...lots of "mmmmmm" noises are coming from him and I swear when he makes a "mmmmuuuuuuummm" noise he's trying to say "Mommy"! Maybe I'm just being hopeful but I don't could be!

Here is a little video taken about a month ago of Ryan looking at and getting one of his favourite toys!

Just a "tiny" little side note. November is Epilepsy Awareness month. This ribbon was made for Ryan by one of the epilepsy Mom's I know through Facebook. If your on Facebook check out the page she has created for her sweet boy Connor - it's called: The Adventures of Connor Man - he's a tough little dude with an equally tough little Mommy!

Here is a video that I have debated posting purely for selfish reasons. I let Ryan down and am so very angry that I failed him. 15 months went by before I could look at this video. Ryan went through approximately 1.5 months of hell (9 months old - 10.5 months old) before he was diagnosed with Infantile Spasms. Due to his neurological impairment, vision impairment and hypotonia I just figured what was happening was due to his already existing conditions. Never in a million years did I think he was having seizures/spasms. I certainly had never heard of Infantile Spasms. For the rest of my life I will be constantly questioning "what if"...what if his IS had been caught and treated sooner. Would he be doing better developmentally? He certainly would have suffered less. I know that that is part of the reason I am so hyper paranoid about every little new or different movement or sound he makes these days. I failed him once by not knowing he was suffering with IS...I won't make the same mistake twice. If that means driving his neurologist insane with lots of video's and emails about anything that seems off then so be it. I will not screw up again. I'm not looking for pity or comments like "you didn't fail Ryan" etc... It is what it is...I should have known. The beauty of the entire situation is that you can't dwell on the "what ifs"...I allow myself to do so only once in a blue moon (apparently the moon is blue tonight). For Ryan the best thing is to keep moving forward and go go go!