Tomorrow Ryan turns 18 months old! Holy cow - where has the time gone? Ah yes, therapy, hospital and doctor appointments! Haha... I'm not complaining! Oddly enough I actually enjoy all of these appointments as it gets me out of the house and socializing with adults! The other day purely out of curiosity I tallied up all of Ryan's appointments from the doctor to therapy to special testing appointments. In 2011, he had a total of 151 appointments and so far less than 4 months into 2012 he has had 68 appointments! Kind of nuts but I know there are lots out there that have it way busier than we do. The sad thing is that due to being so busy and having 2 little ones under the age of 3yrs, it has made it difficult to maintain friendships. On the flip side of things I know they too are busy with their lives whether it be with work or their own families. Regardless, it has been a little heartbreaking as we experience the destruction I guess you could call it of most of our friendships. Since Ryan's diagnosis we have in a way felt and become isolated from those we were once close to. I'm not placing blame, as you can see things at this end are just a little ridiculous and well everyone is just too busy these days I guess. Still...it really really sucks!
I have thankfully been blessed through the internet. Facebook which was once a means strictly to stay up to date on my friends and acquaintances lives has now also become a great source of comfort and acceptance with the support groups I have joined. I have formed some great online friendships with wonderful Mom's who themselves are trying to find their way through this tricky terrain of the special needs word. I love my friends (who I miss terribly) and family and would be lost without their hands on support but being able to connect with Mom's and some Dad's who are living this life 24/7 really and truly is something else. These Mom's get it. They know how it feels to be walking though the grocery store watching other families go about their shopping trips with ease and happiness. They understand when you say you hate going to the doctor's office and see these other kids your child's age functioning normally while their Mommy or Daddy stares at your child with a look of curiousity trying to figure out just exactly what is wrong with your child. They get it when you say you love going to therapy appointments because it's the only place you and your child feel accepted and comfortable. From Michigan to the UK - thank you for being there and making me feel less alone.
A little update on Ryan's eyes since his ear tube surgery last week. His pupil's are still dilated but they are at least finally responding to direct light. I did end up taking him to the ER on Easter Sunday morning. Funnily enough the doctor working was the same one we saw a couple of weeks ago when we were there last! He was able to get a hold of the ophthamologist on call who was familiar with Ryan's eye doctor and the type of eye drops he uses for certain things. He assured us that the drops used on Ryan were safe and in fact are a long lasting type. Well geez, it would have been nice to know this ahead of time!!! When he's had drops in the past his pupils are back to normal by the end of the day. These particular drops can last up to 2 weeks! What I've been worried about is that he goes back to Sick Kids on the 18th for another sedated ERG where he'll have drops placed in his eyes again for another exam. After speaking to Mac a few times and Sick Kids the other day I have been told not too worry. If his pupil's are still dilated by then they won't put drops in. If he does require drops his eyes are not in any danger from being dilated again so soon after the long lasting drops. What I'm also not crazy about is that he's being sedated twice in 2 weeks! Unfortunately, it is necessary and there's not much we can do about it.
This past week appointments have been made for another hearing test and a follow up with the ENT to get his ears/tubes checked out. We also received a referral in the mail for his GI appointment to get his insides all checked out. That however isn't happening until October. Actually that appointment is the day before his next sleep deprived EEG. This EEG will determine his wean from Vigabatrin. We meet with the neurologist the following week for that discussion. I really really don't want him to come off the drug but I know he has too. It's possible though he may have to come off of it sooner if his ERG from next week shows more retina damage. Time will tell...
Here are a few pictures from this week (FYI - the picture at the top of this post is Ryan with his FAVOURITE toy! It's a vibrating/light up toothbrush...I think there is a picture of him with one in an earlier post - he just loves the things)!
I just created a You Tube account (check me out eh! haha) and am hoping I can post the link in here with no cyber trouble...here we go! Gggggrrrrrr it's not working! Please copy and paste the below link into your address bar if you wish to see the video! Sorry, I guess I'm not quite as technically savvy as I thought I was...haha!
http://www.youtube.com/watch?v=lr_B8HpWODU
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