The rest of these are from Memphis, or the trip there. Ethan still loved on Quinn, and all the Mook family was wonderful to be around.
12-29-09
What a happy holiday we have had. Let’s start off with last Tuesday. Quinn had therapy with Stacie, and she had a new piece of technology. It was a computer with an eye movie feature. It had a camera on it that followed her eyes so she can operate the computer with her eye movement or touch movements. She is a stinker and showed that quality off again that Tuesday. Right when she got started on the machine, she did great for a good 5 minutes, then she started grumbling at me – “Mama mama” – then she promptly closed her eyes and did not open them. So I stepped out of the room for a few minutes and as soon as Quinn heard the door close, she opened her eyes, giggled, and worked super hard for Stacie until I got back into the room, then she heard the door open, saw me, and did not want to work again. So I pretended to leave, and stood behind her, where she could not see me, and then she started working again. Wow, she has spunk and I love it. Then we had our final therapy session with Chrissy. The last session, Quinn was mad and did not want to be good, this time was the opposite, and she was showing off and working so hard for Chrissy, working on hands and knees, as well as walking. It was so good to see her end her therapy session with Chrissy in such a great way. We are going to have to work hard to get Chrissy time fit into our schedule outside of therapy now, but are looking forward to it. After therapy, we started out on the road to Memphis. We stayed in a Hampton Inn on the west side of St. Louis, and got to get Quinn into the pool, it was a bit on the cold side, so we jumped into the hot tub and then got back onto the road.
Our Memphis trip was opposite of the Nebraska weather. I heard about how so many friends and family got snowed in and did not get to spend time with their families, and that is not right. We on the other hand, camped out at my Aunt’s house most of the time, and it was great. Quinn loved it, and in turn, she did not get as much sleep as she needed, but it was well worth it. It’s great to see how the whole family just loves Quinn up, every time I turned around someone was talking to her or snuggling up with her, and that means so much to me. We went to Christmas Eve mass, Chili’s, and opened gifts, Quinn is going to be styling thanks to all the family who got her the cutest gifts. I got a sewing machine, which is ironic, because that is one piece of equipment that I never wanted. I have a few friends and family that have sewed things for me and I finally got tired of asking them for help, and I’ve started finding more and more things I could make to help Quinn be more successful, so now I’ve got some learning to do, so now instead of asking my sewing friends to sew things for me, I’ll ask them to help me learn how to run this thing I’ve got at my house.
Well, the other thing that took up a bunch of our time is that my Aunt Pam nominated us for the ABC Home Makeover Show. Part of me was not going to mention it in this journal, but it was a big part of our trip to Memphis. I think there were 17 pages to fill out, and we sent in 4 DVD’s and Erin and Virginia let us include their nomination letters in with the application as well. Dad, Quinn, and I sent in two sets of information to them. One by express mail, and one by priority mail. I keep thinking our application is going to be like artwork. Our story might really affect one person while another person reading our application might not think it’s the right thing. So we have two chances for it to fall into the right hands. I only pray that if this is God’s will to have it happen. If it’s not the right thing, I know God will have other plans for us. So I am excited to see what the future might hold. The paperwork says that they get thousands of applications and will not get in touch with a family unless they are interested because they don’t have the time to get a hold of everyone. I do think this was a good experience. It gave John and I a chance to really go through our house to figure out what works and what does not work for Quinn, we also had to do an interview part for the application and it was good for my soul to talk about our story. It was also good for my soul to hear what my Aunt Pam, Grandma Charlotte, and Dad, wanted to say about our family, humbling and wonderful at the same time. I also was reminded what a good laugh my dad and grandmother have. We left a few bloopers on the tape where they are laughing and every time I watched it, I smile.
Past all that work, we had some good barbeque, watched a few football games, did a little shopping, watched a few good movies and drive through some rain. The week we were there went by so fast, before I knew it we were on our way home. Quinn was exhausted and driving with her being tired is not a great combination. She gets overly tired and that kicks her seizure tendencies into place much easier. So on the way home, she would not fall asleep, and I could see how she was struggling, trying not to go into a full blown seizure, but not fall asleep, so wee only made it as far as Columbia and had to turn in, even then it took a good hour of calming her down to get her to fall asleep. We got up this morning and made it home. As soon as we got home and did some tummy time, she was so happy. It wore her out and she took a great nap. When dad got home, she squealed with delight to see him, and promptly fell asleep this evening before her bedtime, so getting back into a routine is working good for her today. It’s good she got to sleep, because tomorrow we are going to Children’s Hospital in Omaha to the CDC clinic to see about 10 different doctors and therapists so I’m praying doctors see improvement like I do. I know she does not like to show off for them, so I’m taking some video’s to share. So I better sign off and get to bed. It’s been a long few days, with another busy day tomorrow, so I’m thankful for a great snow free holiday, family who loves us so much, a safe drive to Memphis and home again, John, who was stranded at our house for Christmas, but had a great attitude about it, and Quinn who inspires so many of us. What a great week, exhausting, but great! I hope you all found something to be grateful for over the last week.
A quick update, the trip to Children's went very well. We are going to continue to see the Orthopedics every three months, the Metabolics - bone doctor had us do a blood test to make sure she is getting enough vitamin D, and she was so good getting the blood draw. All the therapists were happy with Quinn's improvement and had a few ideas for us. Most importantly all of them said we need to have her in her walker at least an hour and a half a day. The dietitian has already called me on the way home to go over a few more feeding issues, and thinking back to last year, we are doing so much better with feeding issues. The social worker always stops by and gave me a few ideas on the home renovation front. Finally the Pediatric talked to us about neurology since that doctor was still on vacation. We are going to look into doing another EEG to measure brain scans. Sometimes when Quinn is super tired she continues to roll her eyes back and I am pretty sure it's just her being tired, but wanted to run it by the doctors to make sure I'm not over looking anything. So now we are waiting for a few call backs, but it was an exhausting day, I tend to tear up when talking about Quinn for hour after hour, and when I try not to, it gets even harder not to, so it's a draining day for both of us. Quinn slept all the way home from Omaha, and today we did not go do a fun excursion. I wanted to get home on safe roads, the drive to Omaha this morning was a bit of an adventure due to the snow and ice, but we made it there safely and now we are home, we get to sleep in in the morning and enjoy the rest of the week. Phew, what a journal article!
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