On Friday, we go to BC Children's Hospital one last time. I have one last pink ferry voucher in my bag, one last list of questions for the doctor, one last chance for a trip to Olive Garden with the transport paid for by the government.
On March 25th, I put a syringe of Propranolol in Bella's mouth for the last time. The other day she needed Tylenol and fought me giving her medicine and it made me happy. It means that everyone was right. She doesn't even remember those months where she had to learn to deal with it, to suck it up (literally). She's happy and silly. She's incredibly smart. She's super small. I bet she still doesn't weigh 25 pounds and I'm just over stressing about it. I'm done stressing about a lot of things. She's currently jumping up and down on the couch saying "No B-S!" Possibly because I just freaked out over hearing an ad for anti-depressants on TV that said that one in five of us are mentally ill and undiagnosed. I may have called the ad a liar and said they were spreading BS to the masses. Bella has hopped up on my soapbox unawares - which makes me laugh. She makes me bust out laughing every single day. Maybe I could get her a little sign and we could go picket some pharmaceutical company. Anyway, I digress - again.
In the spirit of not stressing about things, we are making this last trip a celebration. Bella, my mom and I. My mom has come with me to almost every last one of these appointments. At the beginning we would sit at the ferry on the way home and I would sob my eyes out and she'd hold Bella and we'd talk. We'd try and go shopping before those early scarier appointments and pretend everything was fine. One time, we sat in a hospital room with Bella strapped to heart monitors and we prayed together for a long time for Uncle John. I would take her out for dinner - once to this stupidly fancy place that we rolled Bella into in her stroller. She napped - we had wine and dinner. We've taken turns while Bella needed to be walked around the ferry because she was crying, then because she was learning to walk and we would break our backs leaning over to help, now to chase her as she runs wildly all over the place and says "hi" to everyone she sees. I don't know how I would have done those trips without my mom. She's cried with me, laughed and shopped with me, helped me to get my questions in order and asked her own and remembered the answers when I was too stressed out.
So on Thursday, as a thanks to my mom for being so amazing during all those early trips we are going here for the night. We're going to take Bella swimming in the amazing pool and then order Indian food to our hotel suite. The next morning we'll have breakfast in the restaurant and drive to Granville Island to run around and shop and look at stuff. Our appointment is at 2:45 and then we'll probably go for dinner one last time and get on the ferry and laugh at how Bella doesn't want to nap and how crazy she is. I'm looking forward to it. Can you believe that?
We do have to talk to the doctor about possible laser treatments for Bella's mark and when that's a feasible thing if it doesn't go away completely on its own. Now when she goes to sleep at night she "prays to Jesus" to "please heal my little mark and make it all better". Part of my spirit, I can't lie, whispers to Heaven, "Seriously, how can you say no to that? Just do it. Please? C'mon..." I guess I know where Bella gets her little "salesman pitch" that always makes us laugh when she wants something.
We're hoping the mark goes away on its own and it may yet, but I think we've decided that we'd like to take care of it before she could get teased over it, if it comes to that. I have no idea what that entails or costs or anything like that so we need to figure some of those things out. I need an ophthalmologist referral in Nanaimo to do check-ups on her eye and make sure everything is progressing fine there. When her face went still right at the beginning, it did some permanent damage to the nerve that controls her eyelid. When she's super tired it droops slightly, doesn't blink quite as quickly as the other one. Unless she's exhausted, you probably wouldn't know it, but it's one of those things we keep an eye on. We've never noticed much difference in the way of actual eye movement but your eyes develop pretty slowly so we will probably still check on that every once in a while.
That said, it's pretty likely that after Friday afternoon - we're done. She's fine, it's over. I think that deserves a celebration. I'm so happy she's okay - so happy that we didn't damage anything with all the steroids or the heart medication. We've decided to take this summer and all just have fun together. We are doing little day trips with her, and taking her to the beach and throwing her a cowgirl birthday party next month, which of course I'm going a little over the top about. I love pony rides - it's going to be great. Can't wait.
So that's it I suppose. One last Bella update, one more trip to Vancouver to finish things off. One more time.
On March 25th, I put a syringe of Propranolol in Bella's mouth for the last time. The other day she needed Tylenol and fought me giving her medicine and it made me happy. It means that everyone was right. She doesn't even remember those months where she had to learn to deal with it, to suck it up (literally). She's happy and silly. She's incredibly smart. She's super small. I bet she still doesn't weigh 25 pounds and I'm just over stressing about it. I'm done stressing about a lot of things. She's currently jumping up and down on the couch saying "No B-S!" Possibly because I just freaked out over hearing an ad for anti-depressants on TV that said that one in five of us are mentally ill and undiagnosed. I may have called the ad a liar and said they were spreading BS to the masses. Bella has hopped up on my soapbox unawares - which makes me laugh. She makes me bust out laughing every single day. Maybe I could get her a little sign and we could go picket some pharmaceutical company. Anyway, I digress - again.
In the spirit of not stressing about things, we are making this last trip a celebration. Bella, my mom and I. My mom has come with me to almost every last one of these appointments. At the beginning we would sit at the ferry on the way home and I would sob my eyes out and she'd hold Bella and we'd talk. We'd try and go shopping before those early scarier appointments and pretend everything was fine. One time, we sat in a hospital room with Bella strapped to heart monitors and we prayed together for a long time for Uncle John. I would take her out for dinner - once to this stupidly fancy place that we rolled Bella into in her stroller. She napped - we had wine and dinner. We've taken turns while Bella needed to be walked around the ferry because she was crying, then because she was learning to walk and we would break our backs leaning over to help, now to chase her as she runs wildly all over the place and says "hi" to everyone she sees. I don't know how I would have done those trips without my mom. She's cried with me, laughed and shopped with me, helped me to get my questions in order and asked her own and remembered the answers when I was too stressed out.
So on Thursday, as a thanks to my mom for being so amazing during all those early trips we are going here for the night. We're going to take Bella swimming in the amazing pool and then order Indian food to our hotel suite. The next morning we'll have breakfast in the restaurant and drive to Granville Island to run around and shop and look at stuff. Our appointment is at 2:45 and then we'll probably go for dinner one last time and get on the ferry and laugh at how Bella doesn't want to nap and how crazy she is. I'm looking forward to it. Can you believe that?
We do have to talk to the doctor about possible laser treatments for Bella's mark and when that's a feasible thing if it doesn't go away completely on its own. Now when she goes to sleep at night she "prays to Jesus" to "please heal my little mark and make it all better". Part of my spirit, I can't lie, whispers to Heaven, "Seriously, how can you say no to that? Just do it. Please? C'mon..." I guess I know where Bella gets her little "salesman pitch" that always makes us laugh when she wants something.
We're hoping the mark goes away on its own and it may yet, but I think we've decided that we'd like to take care of it before she could get teased over it, if it comes to that. I have no idea what that entails or costs or anything like that so we need to figure some of those things out. I need an ophthalmologist referral in Nanaimo to do check-ups on her eye and make sure everything is progressing fine there. When her face went still right at the beginning, it did some permanent damage to the nerve that controls her eyelid. When she's super tired it droops slightly, doesn't blink quite as quickly as the other one. Unless she's exhausted, you probably wouldn't know it, but it's one of those things we keep an eye on. We've never noticed much difference in the way of actual eye movement but your eyes develop pretty slowly so we will probably still check on that every once in a while.
That said, it's pretty likely that after Friday afternoon - we're done. She's fine, it's over. I think that deserves a celebration. I'm so happy she's okay - so happy that we didn't damage anything with all the steroids or the heart medication. We've decided to take this summer and all just have fun together. We are doing little day trips with her, and taking her to the beach and throwing her a cowgirl birthday party next month, which of course I'm going a little over the top about. I love pony rides - it's going to be great. Can't wait.
So that's it I suppose. One last Bella update, one more trip to Vancouver to finish things off. One more time.
