Here is Quinn’s nurse who has been caring for her at school, since her other nurse, Joleen, broke her foot. This is Nadean, and it’s sounding like she is loving Quinn up like crazy, and I sure am thankful!
Quinn with her Bedtime Bear, just look at that snuggle! Love it! Just and FYI: the blue tubing is simple there to give her extra humidity, with the trach.
Well, we have had a great week. I was not sure what could follow up our exciting weekend, but this week was the perfect week to follow up a crazy exciting weekend. So to start off, keep your eyes out for L Magazine. The American Heart Association, rewrote our story, and will have it in that magazine. It sounds like it comes out in the paper in a few weeks.
As for Quinn, she has been a busy girl! A very busy girl. First off, she is loving on her bedtime bear lately like crazy. I remember when she was little bitty, and the therapists would talk to me about how important it was for her arms to come to the center of her body, and how that centers the person. Well, she crosses her arms over this bear, that she holds so tight to her chest, and it first of all, is cute as can be, and I feel so good to see her crossing her arms across her chest, again, such a small thing that is so good to see. I was thinking as I was driving home from school, yesterday the long drive that I spend over 30 minutes most days driving, and I was thinking back to the Heart ball, and all the successes Quinn, has had this last week, (just keep reading) and tears just started pouring down my cheeks again. Tears of joy, and again, I was reminded how lucky we are to have the experiences we have had. I am so grateful for the little things, and they are a big deal. I don’t think I would be as grateful for those things, without all of our experiences and it makes me thankful for all of them. I still would not wish any disability upon Quinn, but we have it so good, and I’m so very thankful for her and how hard of a worker she is. I simply will not take it for granted!
O.K let me say it is 4 in the morning and I can’t sleep. Quinn is doing much better sleeping through the night, but I have not readjusted to it quite yet and so I’m wide awake, thinking of the million things I need to do, so figured I would start here, as the stories I have for this week are amazing! So just keep reading! Amazing I tell you! If it is a bit off kilter, know that it’s early, it’s all true and amazing, but I am a bit tired, not tired enough to sleep, darn it, but, well… just keep reading this is going to get good!
First with the amazing, but not crazy amazing yet. Well, Quinn is 4 and she is now acting more and more like a 4 year old. She is now throwing temper tantrums. Not for everyone thank goodness. As Quinn’s nurse, Nadean was asking Chrissy, if Quinn ever cries or gets upset. Well, I’m glad she does not do that at school, but YES, Quinn can throw temper tantrums like crazy. She has been doing it for Chrissy lately, when she wants something, and she does it for me at home. She can start yelling and crying and can she ever get loud. She has the trach figured out and can totally find her voice now! Now she does not throw fits for her precious dad, but he has stepped in and had a couple big talks with her, that he will not follow through with their special nighttime ritual of singing, and cuddling before bedtime if he hears that she threw any fits. Well, she is to smart, because yesterday she did not throw any fits, so she had her daddy time, but right after daddy time, when I had laid her down, and was getting her situated for bed, she threw another fit. Interesting she did it after her daddy time. She is a smart cookie.
Getting back to school, she did not throw a fit on Tuesday, but did, in fact get her point across that she did not want to be there. Basically the entire morning, she kept her eyes closed. How weird is that. She was not asleep, and would peek out a bit here and there, but has figured out, if she does not want to work, she simply closes her eyes. No tantrums at school, but she figured out a very good way to get out of working. Darn, we are going to have to get smarter and smarter to stay a step in front of her. She was fine the rest of the day, and fine when she went to school Thursday, and kept her eyes open and did great. I don’t know what was up with Tuesday, but a calm passive way to get her point across, I guess.
Tuesday afternoon was therapy and I was not there, as I was at my school doing Parent Teacher Conferences, and was told another fun story. Staci, Quinn’s speech therapist, was telling me about how they were using the computer to have Quinn touch the things that matched. Stacy was behind the computer and helping Quinn that way, so she could not see the screen, but knew Quinn was touching the right things because of the sounds, I’m guessing, when the next picture came up, Quinn said “wheelchair”, yeah, another new word. Staci even peeked over the computer to see the monitor, and yes, it was asking her to match the two wheelchair pictures. That is great! We are starting to look into getting some kind of computer that Quinn can take with her to help her get her point across to the people around her. I’m sure it will be a long process, but if it can help all of us understand her even more that will be great. It might even help with her tantrums, as she might find easier ways to get her point across to us. I just wonder if she things we are morons to not understand her sometimes, and that is why she gets so upset. I don’t know.
Wednesday is where this blog is going to get good! Quinn always stays with Chrissy all day every Wednesday, and after her strange Tuesday, when I told her it was Wednesday, a “Chrissy day”, she threw her hands up in the air, and yelled “Yeah”. Again it’s a big deal in our house to see her throw her hands in the air, as that takes lots of control. Quinn really does love school, and is learning so much, as she is usually excited about it too, but not Tuesday, with her eyes closed, and now giggling with delight to be going to hang out with Chrissy, but really that is nothing new, as she loves Chrissy. Well, Wednesday was a very good day! A very good day. I always try to call over my lunch break to see how the morning is going, and was greeted with great news. Amazing news! Quinn was identifying letters. A truly tangible, no doubt about it, no one can second-guess it, picking out correct letters. Whew, what a big deal. I’m going to use Chrissy’s words here of what happened.
I wanted to let you know that Quinn must really be paying attention at school. On Wednesday she identified 10 different letters. R U B E A P T S C and W when choosing between 3 different ones with 100% accuracy? YEAH! - Chrissy
PS. She would touch the letter I asked for, out of a group of 3. I put my hand under her elbow for support, but she did all of the reaching.
I agree, YEAH! Yeah for Quinn, Yeah for Chrissy, Yeah for School, yeah for a great support system, not taking her at her first impression, which is not always very good, as she acts like she can’t do much, but giving her time and love and, not giving up. Because even on the days where she might not be acting like she is paying attention, she is, as is proven by Wednesday’s events. I've heard that she practices letters at school every day, talking about them, looking at them, tracing them, and writing them. Wow, it's working!
What a wonderful week we have had. We just continue to see Quinn grow and figure things out, and it’s amazing to watch her figure things out, I feel like a broken record sometimes, but again I’m reminded how – Life is Good!
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