Smooth Sailing

Well, life has been smooth the past couple weeks. Quinn has her days, days when her tummy hurts, bloats up, slows down, days when her legs don't want to coordinate with what her head tells her to do and days when you can just see in her eyes that this day is not a good day. But, these days have been fewer and Quinn seems to be happier, thriving and showing her personality. And boy, I mean her little miss prissy princess personality! Now that she is talking more, she is bossing more too. Ah, but it is cute. She loves reading her books. Though she doesn't know HOW to read really, she can pick out a few words and help me out. words such as "the", "a", "go"... this is so exciting to stop on a word and hear her finish it!!! I will read her a story a couple of times and later, catch her in the act of "reading". She remembers some of the story and she "reads" it aloud to all her stuffies.

Quinn is gaining weight now again. That's just awesome because I was getting worried about how very thin she was looking. It must have just taken a while to show. She seems to be doing well on the jtube feedings. We had an issue with pressure in her belly and it pops the christmas tree off her feeding tubee and causes her belly to drain everything and then a TON of bile. though I'm not sure if there is anything I can do about this, she hasn't had this issue in almost a week so hopefully things are starting to get better in there.

Things have been so normal here, it's hard to try NOT to get comfortable. Sometimes I wonder if things are normal just because I tend to keep Quinn in two environments only, in hopes to not tire her too quickly and keep her healthy. She literally spends all her days at home, or at my mom's house. I take her to the park sometimes and little places here and there, but that's just about it. when school starts up, this might become an issue again. And then all my hard work will be put to rest. But, I can't dwell on stuff like that. Quinn is Quinn and these are just issues we have to deal with. These are issues i'm willing to deal with if I want to give her a chance at a normal life. Besides, I know things could be worse.

Quinn said goodbye to her teachers a few weeks ago. She wasn't able to say goodbye with the rest of her class because the ceremony was the friday she was in the hospital and she was still too sick to go to that. so we came back and said goodbye. these teachers are sooo supportive!!! It makes me feel less crazy. It's one thing to have my families on my side, but it's a whole different ballgame when people like her teachers are able to see these issues with Quinn and be supportive! I mean, they watched her from the beginning of the year, she was in school, she was eating normal foods, she was never on oxygen (though they had it just in case), she was strong and just like a normal child! they watched the reality of this unknown disease unfold right in front of their eyes! and they are the ones who were very assertive in how this change took place. It started with her just looking extra tired, then she started having seizures in class and throughout the school year, Quinn started needing more and more oxgyen, less and less days at school, until it got to the point that she had to be on oxygen and feeding tube 24/7. this is a significant change in just one year. So when we went to say goodbye, this was very emotional for a lot of them because they have all grown to love Quinn. If I have my way, Quinn won't be going back to that facility. She will be at the facility closest to me. A lot of the staff from this one switch to and from these two facilities so it won't be too too bad, but she just needs to be closer to me and my mom so we can take shifts on who stays with her in the classroom this way she might be able to be in class more. the teachers weren't thrilled when I told them what I had hoped for next year, but they were understanding and promised to visit Quinn in the new facility.

I am truly trying not to get comfortable with how well things are going right now, but as I said before, it's very hard not to. I'm suppose to sign up for school, but I STILL haven't yet. I know it seems foolish of me, but it's draining to sign up for a full semester and have to drop classes because Quinn becomes ill. It makes me feel like a failure. and semester after semester, this has proven to be the case. it's like when Quinn gets sick and needs more care, or when she goes inpatient, I feel like a bad mom if i DON'T spend that time with her and see her through her illness, but then, if I drop classes, I feel like I am failing at being a student, so either way if i have to find the strength to get through one, I am too hard on myself and I feel like i'm failing the other. It's still no excuse to not sign up for classes and get through another semester. I'm years from my goal and the longer I wait, the longer it will take. So I just have to suck it up.

Some pictures for my readers.