Topped Up

Love the sweater Sandra A.! Honestly I've had a pretty rough past week or more like it Alistair has. I feel melt downish really and have done so many a times. The whole trip started off great. I took Alistair down and we had our stroller and a backpack to get everywhere. It worked out perfectly as a friend that worked in the NICU lived between Main and Cambie so I'd just have a 20 min walk every day to the hospital which was so refreshing and of course its gorgeous as she lives right in the middle of all these old homes with amazing vegetation growing everywhere. We even managed to bypass the rain for the most part. So why the melt down? Well its just everytime I go down there everyone says something a little different and they all ANALYZE as they should but sometimes it gets a bit much hearing them say this isn't right that isn't right and then they bring in more specialists because hes "so interesting" My thoughts are its just great you think my kids issues are "so" f....ing "interesting" while I sit here trying to hold it together. Mind you they do ask me if I would mind if specialist come to see him and of course I say no problem as I think perhaps they can shed new light as no one seems to know what he really is dealing with. Plus I do think that perhaps specialist or students seeing Alistair will help other little kiddlets down the road. Anyhow the last two days he had to be NPO (no eatting) for tests...... one being a brain stem hearing study in which they put him to sleep and see how his hearing functions go and the other was for a growth stimulating hormone test to see if his glands are pumping out the right stuff in the right amounts. So then he blinks his little eyes at me and smacks his lips saying why the flip don't you get that I'm starving! One great thing is we got a new neurologist. The neonatolgy team pulled some strings and got us in with Dr. Connolly while we were down. That was great just a much better fit for us. So the last day she comes by with some more specialists and tells me that she reviewed his MRI and thinks there may be some development issues with the brain! That sent me toppling as I had been told that part was free and clear. Now I know its all grey...no black and white answers so one never knows but March had been so positive for us with his development etc and I was so optimistic and hopefull. Not that I can't remain positive but it seems every month we're hit with some unexpected turn of events. Anyhow we came home, mom (ie me) totally mentally exhausted, and the following night he has a cluster of aproximately 10 seizures in 50 min. The worst part was he was in a lot of pain ....he gave out a screaming type of cry. We didn't know if it was going to stop so we took him in and of course his last one was here at home. But they presented so differently then the others. These ones his arms were stretched out at 90 deg to his side with his hands open, his head stayed midline, and his eyes would roll back as he curled his torso. At least I can have contact now with a nurse down south and she informs the neurologist there. The nurse is very supportive and available for me to call which is a major bonus when you sit at home stewing about your line of action. The good thing is hes started on a new antiseizure med but they take 9 weeks to bring it up to their perferred dose as they slowly introduce it due to possible adverse reactions but mainly steven johnsons sydrome is the biggest concern! ACK! Luckily so far he's only had two doses and no signs of a rash. So ya I'm topped the flip up. I've also been house bound since as of course I don't want to leave him. I just like to be close when hes possibly going to go into unstable mode. Not that he really gets too unstable like he doesn't loose his airway or anything. I did get out for a walk last night though on the farm here so thats good. Jason and Mom also offer to watch him but I'm just stubborn. Hopefully thats the end of his seizing for a bit and life can go somewhat back to normal. It just is so awful to see your kid in so much pain and you can't do a flippin thing!

....Oooo to go on about the hearing test...they ended up finding that he has conduction issues in his right ear possibly due to the fact he has stenosis of his ear canal....meaning his ear canal shrinks to a diameter of about 1-2mm. The bummer part is we likely can't use an air conduction hearing aid as they won't beable to make a good fit for it so he'll have to use a bone conduction hearing aid. Which just means he'll look like he's going to be working out with whats her name on Flash Dance. Yes he'll just have a little blue band on his head that will hold on this small little box that sends vibrations of sound through the bone to be picked up by the cochlea. As for the other ear it has sensory issues which means something isn't working properly with his inner ear. Unfortunately Alistair woke up before the test is done so we are going back down in April for more tests but it looks like he can have a air conduction hearing aid which looks like the typical ones we all know. He just won't get it until after the test. However, the great news is he gets a trial bone conduction hearing aid for his right ear by next Wednesday! I can't wait to see how he'll react. The audiologist says its always fun when they get the hearing aid on for the first time. Another great thing is we don't have to buy them for the first 5 years. Thank goodness as this bone conduction one is definitely a pretty penny!....$3500.00 So in other words don't step on it! We found out all about him getting the hearing aids today so it made for a great day. I'm just so happy there is something that can be done for his hearing. Lovely stuff. ...Well peps its obviously been a bit of a roller coaster ride this past week but things are starting to settle off and I am definitely starting to renormalize. Just a lot of input in a short time. Ooo yes one more thing WE GOT A DOC in PG! The Emerg doc the other night said he'd take Alistair on as a patient. That really is a huge relief as there are ZERO docs accepting here. The other bonus is I got good vibes....so ya we've had a few real bonuses in this chaotic week. ...K I had better sign off before my finger pads start to bleed....thanks for listening......Julie