Saturday, 14 April 2012

Busy busy busy...

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. 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)!

Sitting in his "true love" the Jumperoo checking out his new book from the Easter Bunny!

Checking out the picnic table! So amazing to see him actually reaching for things!!!

Doing a little vision/OT stuff. The black board in the background (thank you Dad!) are to help block out any visual confusion so he can concentrate on what's in front of him.

Sitting up like a big boy in his Pack N' Play! Still VERY new to see him sitting like this and so very very exciting!!!

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 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!

Saturday, 7 April 2012

Tubes and Tears

I know my last post was titled “What a week”…this one hasn’t been much different! Ryan had his ear tube surgery on Thursday but of course the poor thing came down with Quin’s cold that very morning! This kid has the worst luck I’m telling you! I called the number they gave me should he get sick, they said if he doesn’t have a fever to bring him in and they’ll check him out. So off we went.

When we got to the hospital and checked in with “Same Day Surgery” they gave me a mask to put on Ryan (who was already in the middle of a meltdown from not feeling well). As you can see he really wasn’t feeling to great or happy with the days events so far (note the little tear).

We were sent to the very last bed in the unit as far away from everyone as they could get us. After a lot of waiting a nurse came to take his temperature (no temp in his arm pit but a slight one via his ear). Off she went to get someone else. An anesthesiologist resident came to see him…she asked TONS of questions and listened to every square inch of his chest/back. Thankfully he had fallen asleep in my arms by then and was quiet so she was able to get a good listen to his lungs and chest. After she left, we were alone for a while when another nurse came to see us with yet more questions. SHE then left and a little while later someone came to take us to the OR but we still didn’t know if they were going to go ahead with it. The head of anesthesia had to check him out as well as the doctor doing the surgery. I mean really can nothing just go easy for Ryan…I was so frustrated for him. Eventually both the doctor and head of anesthesia came to see us and conferred with the resident and nurse. It was decided that they would go ahead as planned! YEAH! So I suited up in my hair cap thingy and the full zip up body suit so that I could carry him into the OR and stay with him while they gassed him. After a quick kiss and a few tears they dragged me away from him. Anyone who has been through the ear tube surgery thing knows that it’s a very quick procedure. I was in the waiting room for about 20 minutes when the doctor came to tell me that everything went well and that they had to get a lot of wax out before they could even get to his ear drums…poor guy. When the cut into his drums a lot of thick fluid came flowing out. It’s a wonder Ryan could hear at all! Not long after, Ryan’s ophthalmologist came to the waiting room as well. Sorry I should back up a bit. At Ryan’s last eye appointment, the doctor said he would like to take a good look at Ryan’s eyes when he comes in for his tube surgery since he’ll be sedated. He gave me some drops to put in his eyes so they would be dilated for the surgery the next day. So the doctor came to see me shortly after the ENT doctor did and said that Ryan’s optic nerves are as expected (still about 50%-60% of the size they should be) but that the good news was that while he is far sighted it’s not bad enough to require glasses (they are only about a +2 or +2.5). LOVE getting good news! Eventually a nurse came to take me to Ryan. Before I even got to the recovery room I could hear him screaming. When I came around a corner I saw a couple of nurses wrestling with him and his IV. They lowered his bed and told me I could climb up and cuddle with him. I could tell just by holding him that he was in a whole lot of pain and very stressed out (never mind that his piercing screams told me that already). They said he had a big dose of Tylenol but after some time it was obvious he wasn’t able to settle so they gave him a bit of Gravol. Some time had gone by and he was still writhing and screaming. It was getting difficult to hold him. They decided to try a touch of morphine and after a little bit and a whole lot of bouncing and shushing from me he did eventually settle and even managed to sleep for a bit. Off to the next recovery phase/room we went where he was allowed to have a bottle and another sleep.

Jeff had come to pick us up by then (and brought me a yummy sandwich!) and whisked us back home where we got Ryan all nice and cozy in his sleeping bag and crib.

Today is now Saturday. Ryan’s eyes were dilated with the drops on Wednesday and his pupils are STILL dilated. We're a bit worried as it's been 70 hours now. Telehealth wasn’t able to help me so if by tomorrow morning they are still dilated we’ll be heading to the ER.

A little off topic note with this post. Tonight in the bath Quin kept trying to put one of her little toys in Ryan’s hand. As always when anyone touch’s or holds Ryan’s hands or arms he instantly snaps his hand away. It’s a major sensory issue with him. Quin kept looking at me when it happened and had this sad, confused little look on her face coupled with that funny, confused little laugh that kids and even adults do when they are unsure of something. I do my best not to cry in front of the kids but this just sent me over the edge especially since it has been such a stressful day (also “afternoon shift” aka I’m on my own for 8 nights in a row). I gave Quin a big hug and told her Ryan’s hands were just a little sore and tried to get Ryan to cooperate so she’d feel better. He wanted nothing to do with having anything in his hand so I just let him be and distracted Quin with something else. She is one very tuned in kid when it comes to people’s emotions etc… I’m sure a lot of kids are like that or maybe even all kids but whatever the case I’m glad she’s the way she is and I hope it continues. She’s got a big heart and that’s going to be so important as her relationship with Ryan grows as they get older. A long time ago not long after all of this began I tried explaining to Quin what was going on with Ryan. She was just a little over 2 years old and obviously not able to grasp the magnitude of what was happening so I tried explaining in a way that she might understand. I simply said to her that Ryan’s eyes were broken and he couldn’t see as well as she could. Her sweet and simple response was “Mommy fix it”. Like I said I try not to cry in front of the kids but that just did it. I hugged her so tight while I was sobbing and didn’t say anything…I mean what COULD I say. This is just something Mommy can’t fix. But man oh man we’re all doing everything in our power to make it as easy a situation as we can for both of them.

I don’t want to end this post on a bad or sad note so here’s some “good” news. In the last couple of days since Ryan’s surgery he has seemed much more alert and aware of what is going on around him. When he’s not crying from discomfort from his cold, teeth or ears he’s really been quite happy. It’s almost as if he’s feeling re-born. What I wouldn’t give to be inside his head, obviously to know what he can see and feel but to know what his hearing was like before the surgery and how things are for him now. We’ll just go with what we see on the outside and it all seems to be pretty darn good according to him!

Happy Easter everyone!