After I finished my last post I called Matt in the room to give it a read before I posted it, as I usually do (especially when it's particularly sensitive material). Matt read over it and when he was finished he said, "it's good." in a tone I knew meant, "ask me again, pry...pull it out of me, I need you to beg me to tell you why I don't like it, because I don't want to hurt your feelings." So I did. "What Matt? What's the issue? Be honest." And that's when he finally admitted that he thought it sounded too self defeating. Which I replied to with, "Umm, it's a blog/journal I write about our terminally ill daughter, I'm not sure if people reading it expect to read about sunshine and lollipops and happy days." This blog is for me first and foremost, and I'm always going to be honest...this is not fiction, there might not be a happy ending. Purging my feelings and the weeks events help me move on and move forward and be better able to handle what's coming at us next. After we discussed it and I took out a little of the super sensitive info, Matt and I realized that we both just have two different ways of dealing with heavy issues. He realizes that I am a 'wear my heart on my sleeve' kind of person and I realize he is more private (like the majority of people I think) and this is what I need, but I have to take his feelings into consideration as well...which is why he'll always be my proof-reader.
We've had a few appointments and changes with Charlie lately. We saw her pediatrician and we are now administering a new medication to Charlie that dries her mouth out so she produces less secretions so she doesn't choke on them. Who would have known that such a medication even existed? She is also getting twice weekly suppositories because the poor girl doesn't have the muscles to poop properly. We went to a place called The Center For Ability to meet with a stroller rep because Charlie is going to need a specialized stroller soon that can hold all of her equipment and fully recline, while providing proper support for her head...it's priced at about 6500$ with all the special attachments she'll need. Luckily, we'll be partially funded by the CFA as well as the Variety Club and other such organizations, and we'll wait and see what we owe. It was another one of those 'holy shit this is our reality' appointments. We found out that we are going to need a van to transport Charlie soon, and that we may not even be able to take her in the car/van eventually because she'll need to always be lying flat and even if we have tie down straps for the chair/stroller, apparently it may be the law that you can only be reclined a little. So, we'll have to figure that out. We were very upset and emotional as we were hearing all of this information. Just overwhelmed. And then guilty because we felt angry with ourselves for being upset by these changes because the only other way to avoid experiencing these changes in Charlie is if she dies. And of course, that's so much worse to us. Ahhhhh! Stupid. Just stupid.
At the stroller appointment we were also given some toys called "switch toys" for Charlie. They are toys that are adapted for children with limited muscle control to play with. There is a cord attached to the toy and then to a large circle/pad that requires minimal pressure from the child to make the toy work. We borrowed a stuffed penguin that moves around and quacks-I didn't know that penguins quacked?? And another little toy that is sort of a dance floor with two little prince and princess figurines that dance around together to the song "Born Free" I almost peed my pants laughing when Matt joked, "Sure, why not make a toy for a dying child who'll never walk that consists of two people dancing to the song Born Free ? We have a twisted sense of humour...but you kind of have to.
...I took a 6 hour break from writing this post today and in that time Matt and I went to see Charlie's respirologist and then over to Canuck Place to meet the Fisher family who also has a daughter with type 1 SMA. We were once again caught off guard at the doctors because he informed us that Charlie's disease is in fact progressing. He told us that she is becoming unable to swallow her saliva so it is pooling in her mouth and if we don't start using her suction machine, she could asphyxiate. He also told us that the medication we were prescribed doesn't usually work and doesn't come without some serious side effects, one of which we noticed was instant dry mouth and cracked lips on Charlie this afternoon, after only using it twice. So, we're done with that. We discussed bipap (breathing machine) again with the doctor, saying we want to start her on it asap, and we were sent home with an oximeter machine to monitor Charlie with this weekend to see how she's sleeping and how well she is managing with her breathing, and then we'll take it from there. It was nice to finally meet the Fishers and meet someone who knew what we were going through. They were very kind and showed us all of the procedures/therapies they do with their daughter Shira on a daily basis...which was scary and overwhelming for me, but empowering for Matt...he feels optimistic and in control when he can see around the corner. We left mentally exhausted from our day, but more confident in what we are capable of...and just generally less terrified because we at least got a glimpse of whats to come instead of fearing the unknown...or pretending it wasn't going to happen to us, which is scary in itself.
It's my friend Christine's stagette tomorrow in Chilliwack. A whole bunch of us have rented a log house with a BBQ and fire pit, with the lake right beside us for a midnight dip. It will be my first overnight without Charlie. I am looking forward to it but like any mom leaving her baby for the first time, I'm also a little nervous. But, I'll be surrounded by a lot of amazing women who I'm sure won't mind when I get a little tipsy, and pull out my iPhone at any opportunity I get to show them pictures of the "cutest little girl in the world."