1-27-10

Well, it’s been a long cold week. John has been super sick, laying around the house, and I’ve been worried about what I would come home to especially yesterday, as I could not get a hold of him and it was a scary feeling. Not to sweet and innocent to talk about, but life is not always easy. He finally got to the doctor today, so I’m hoping things start getting better. He has been sleeping a lot and staying away from Quinn, and I can tell that is hard on her, but we can’t risk her getting sick.

I finally called the neurologist to get results from the EEG today, and they were what I though. The nurse called me back to say Quinn’s brain waives are very abnormal (that is the same as the past, so I should not let it get to me, however....), but she did not show any seizures during the reading. So I wish I could just focus on the positive and say, phew, the motions she takes where she rolls her eyes up are not normal, but they are not seizures and that is a good thing. I believe on a not so emotional day, I could end with that, but after worrying about John, having a few things with the house needing fixed, a list a mile long to get done, and being tired of the cold and just worn out in general, it really hurts to hear that my daughter’s brain reading is “really abnormal”. We have an appointment in a little over a month to talk more about it, but I should not worry about it for now. O.K., when I tell my kids at school not to worry, we’ll talk later, I want them to worry, but honestly, I’m getting good at being patient and waiting. Yes, I know she is not on track, and I understand she is not like other kids her age, but today as I listened to the nurse say those words -"very abnormal", I just let the tears roll down my cheeks. I love Quinn so very much, and I understand our situation, but sometimes the words really hurt my heart.

O.K., let me get it together, wipe those tears away yet again, and focus on the positive. Quinn has been figuring out the crying thing. She knows if she cries like she is hurt, someone will be there to pick her up faster then a speeding bullet, and she did that with me yesterday and with Virginia twice today. I was not sure if something was hurting her, but Virginia said both times she picked her up, Quinn smiled and giggled at her as if to say, yup, you got her fast, thanks, this is working out pretty good.

So as a teacher I understand that the physical written grade on a report card is not the end all be all, and there is much more to a student then their grade, and that is so true with Quinn as well. I know what she shows folks and they all see a different version of her, and although they are all true, they are not all correct. I will continue to advocate for all her abilities and there is a handful of us that see her at her best, and so it is my mission to continue to teach and share our story in hopes that it helps just a few folks to see that kids with disabilities are just as important as everyone else and have just as much to offer. I know I have learned so much and love every eye roll, every miracle moment and every hug, because I know how hard she has to work to share her special moments and I’m so lucky to be a part of her family!

On a calendar note, Quinn had her first physical therapy session with Diana,(yes now we have Diane, our occupational therapist and Diana our physical therapist) she did not show off, but that did not surprise me, she thrives on relationships and needs that before she will show off, and I’m ok with that.

Goodness, I am hoping to warm up mentally and physically. Get a grip and get back to being positive and optimistic. Don’t get me wrong, I’m still there, just a bit of a hick up, and I’ll be back. I think a big Quinn hug in a minute will help. A few deep breaths and a good night sleep and some quality Quinn time and I’ll be good to go.
So I guess a few prayers for all of us could really help us out this week. Just getting my emotions out and into this computer is a nice release though. Thanks so much for checking in on us.
Susan

1-22-10

Here are Quinn and Veronica after our trip to the Movie the Princess and the Frog. I have to say it was a great movie!
Here is Quinn getting her EEG done. Next time I’ll have to get a picture of the computer so you can see what it looks like when it tracks her brain activity. I don’t think I would want to fall asleep either when I don’t understand why these cords are all over my head.
What a week we have had. Saturday we got to play with Veronica, (Virginia is our babysitter, and Veronica is her daughter, she is in 3rd grade) and we had so much fun. First of all, Veronica is so good to Quinn. She loves to read to her and is not afraid to be around her or anything. I think it’s partly due to the fact that she is a good kid, and partly due to her mom being such a good mom in how she models how wonderful it is to be around Quinn. That means a lot to me. Well, on with the story. We went to the Princess and the Frog, and it was a great movie. I suggest it to everyone. Quinn watched about 20 minutes and promptly fell asleep in my lap. Then we worked on some clay projects and then Veronica helped me label and sort projects at school to get ready for the following week.

Monday we did not have school due to Martin Luther King Jr. Day, and we took advantage of the day to get in appointments. First we went to St. E’s hospital and had an EEG done. An EEG is where they connect wires to Quinn’s head with some stuff that looks like toothpaste, and then we hope Quinn falls asleep. The best readings are in the stage right before a person falls asleep and is also when seizures can happen the easiest. This is the one and only time we want her to have one. So some how Quinn was kept awake the night before until 2:00 in the morning. Crazy, I know, dad pooped out before Quinn did. Well Quinn did not fall asleep during the EEG, a new surrounding and weird things on her head, she was definitely not going to go to sleep, she needed to stay awake for self preservation. Well after 30 minutes the EEG giver, I don’t know what title she has, said that the read seems to be pretty good, and it did not look like Quinn was going to fall asleep, so she was going to stop the read and be happy with what we got. Well as soon as she stopped the reading and turned the light on, Quinn did the eye roll that we were trying to find out if that was a seizure. We got the machine turned back on long enough to catch the tail end of the activity, so I’m thankful for that. Now I’m just waiting to hear back from our Neurologist after he reads her results. Not surprising, Quinn has taken a few long naps the last few days to make up for her short night.

Monday also consisted of an eye doctor appointment, where she did not try to close her eyes as soon as she saw the doctor. He is satisfied with how she is doing, and just wants us to keep patching each of her eyes every other day for a few hours. We also had speech therapy with Staci where Quinn worked as hard as ever. We also found out we will be starting Physical Therapy again with Diana, so that will be good to get into again.

Our fun story for the week was Thursday’s therapy with Diane and Staci. Virginia told me how they have been working with Quinn’s arms. I’ve seen that with Staci other days as well, and Quinn is slowly starting to figure out how to use them. She does not use them a lot because I can tell it is very demanding on her to concentrate so hard to get them to move the way she wants them to. Well, they were rolling the ball back and forth and a few times she used her arms without any help to push the ball back to Staci. That is wonderful. After Staci thought they were done she asked Quinn if she could have the ball back, and Quinn said “no”. Then to follow that up, Jen, and Jed came by Friday afternoon, and Quinn still has a thing for males and although she loves Jen, wow, she worked like no one's business. She kept her eye on him the entire therapy session. She also worked harder in that hour then I've seen her work in quite awhile. Walking, talking, moving her hands, and is now exhausted, and has taken a nice long nap to compensate for the hard work. I can not lie, I took a nap with her. Phew, what a week. It works for me! Have a good week. Thanks for reading!

1-15-10

Laughing - To express certain emotions, especially mirth or delight, by a series of spontaneous, usually unarticulated sounds often accompanied by corresponding facial and bodily movements. -Freedictionary.com

Wow, Wednesday night was a wonderful night. Quinn played with Elijah that day, did walker time, stretching and rolling with Virginia, a good bowel movement (which is a big deal), a nice long nap. Ate Vanilla pudding with bananas, played with mom, hung out with dad, watched some American Idol, and when I was getting her ready to go to bed, I always tell her to tell dad good night, then I pick her up, give her a big hug and we go do the bedroom ritual stuff and then go to bed. Well, I just got done telling her to tell dad goodnight, and picked her up and started to give her a squeeze, and it hit! Laughter, not just a little, but she started laughing, her tummy was moving back and forth against mine and she had the biggest smile on her face. Wow, John and I could not stop smiling, and I’m not totally sure what it was, but the mood hit her and she was showing us what a good day looked like.

Laughter from a child is the best thing ever. I had a good day, but that would make even a bad day wonderful. Oh, listening to the laughter was amazing. Just thinking of it puts a smile on my face. How lucky we are!

1-7-10

Blue has been very protective of Quinn lately, I’m not sure if he just wants to steal her heat, because it’s so cold, but I think it’s more that he is just loving her. He will rub up against her hand, and then lay as close to her as possible, while still being so gentle around her. She was working on tummy time in her super warm jammies, as it was a jammie day for both of us yesterday!

It’s our 2nd snow day in a row here, 5 total this school year already and I predict we are not done yet. My dog showed me how cold it was this morning, I was watching out the window as he did his business, and he was an acrobat. He was trying to balance on his two hind legs and having all kinds of issues. It was quite a site, that wore him out as now he is sound asleep at Quinn's feet again. Well, back to the story, I love teaching and we are really falling behind, but I also love having time to hang out with Quinn. Yesterday we played on the sewing machine. I made a poncho and scarf that was a bit to short, but it was a start. I also hemmed up three pairs of pants. The first one I did a bit to short, but I got the other two looking pretty good.

I’ve got a wonderful story about Quinn. Before I tell the story, I have to mention again that Quinn is three and shows off on her terms. Most of my family think I might be a fibber as Quinn will not talk with real words when she is with them. In fact just a few people really hear her talk. When she is around people she does not see on a regular base, she drinks them in and take in everything around her. She talks more with her speech therapist then anyone. Her Grandma Martha, Grandpa Harold, and Aunt Sarah were all here this last weekend. Sarah was trying to get her to talk, and did hear her say “Mom”, and when she was leaving she got right in Quinn’s face and was trying to get her to say bye or say anything, Quinn looked at her said “no” and turned away. Well that is something. Now for the big story. Virginia took Quinn and Elijah to the Children’s Museum on Tuesday and one of the stations there is face paint. Well she was telling Quinn that Elijah was a dog and Quinn was a cat. I’m not sure how many times she told her but Quinn is a smart girl. Later that day when Quinn was at therapy with Stacie, Stacie asked her if she was a tiger, Quinn said “ no a cat ”. Wow, no prompts, no repeat after me, just a correction in the fact that she was a cat. Well, I knew Quinn was right, there was no way she would have said that if it were not the truth, but had to call Virginia to check, and found out yes, she was a cat. Wow, I know how smart she is, but sometimes when she does not show off for anyone, I think to myself, I know how smart she is, but the doubt sinks in sometimes and I wonder if I am making things up. So yea for Quinn. She keeps reminding all of us to watch out, she is amazing, and it reminds me that I need to be careful what I say in front of her. Luckily I don’t have a big issue saying things I should not, but I need to be careful!