June 26, 2010

Wow, we are having a busy summer! Here is one of the resting moments with Quinn and her dad for father’s day! Just look at how big she is getting! I’m thinking she had another growing spurt! I’ve figured out I need to hold her on my right side more often because as we have been looking at houses, I have found out that I can hold her on my left side no problem, but can’t hold her as long on my right side, so as we look at more homes today, I’m going to try to hold her on my right side. As for the looking for houses that can be modified journey – it’s crazy! We have found a couple homes that might work, we are going to try to get an architect out to see them next week, and I’ve also learned that some people live like pigs! Some houses we have gone into are stinky and just plain gross! As for our house, we had a painting party on Wednesday, thanks girls for helping. Our garage is filling up with the clutter that we are pulling out of all the rooms; I’m painting like a mad woman, and boxing at the same pace. I’m actually glad I’ve done so much boxing at school, as I’ve learned from there, that it can get done, just keep working hard!

Well, let’s get to the fun stuff!

Here she is after the dentist with her goodie bag and prize. She is also showing me how she can open her mouth big and wide for the dentist to see.

Quinn has been working hard, but I think she got a bit of a cold, as she is a bit sniffily. I have to say that I have not spend near the time I’ve wanted to with her this last week, with trying to get our house ready to go on the market, but the time that we have spent together makes me so happy. Friday was our big day this week. Quinn had her first trip to the dentist. We went to see the dentist, who was wonderful with Quinn, so I’m glad we got a referral there. When we were there, Quinn did great! She likes to have her teeth brushed, so that part was fine, we the dentist started scrapping the stuff off her teeth, she freaked a little and held her breath, which scared the dentist a bit, but over all it was a great visit, and to top it off, Quinn got a cut giraffe and bubbles, I totally forgot about prizes at the dentist office.


Quinn did amazing at water therapy with Erin, and her student Erin, yup, both Erin’s. Quinn kicked like crazy, and even started moving her hands in the water to go. That is a big deal, those hands are hard to get to go the way she wants them to, but she conquered them a few times and it was wonderful to see!

We will have some fun events over the next two weeks, Work hard Play hard comes to mind. I’ve got to work hard so Monday Grandma Vicki and Kaleb are coming to play and we have a few fun events planned. Part of it entails laying much in the back yard that is something fun for an 8-year-old right? Well, that is not all the fun, but it’s good to be helpful too, so I’ll just say I’m helping him learn to give of himself! ☺ Well, now I’m really thinking I better get to work, so off I go!

Please say some prayers that we get the house in order in the next couple days, and that the right person sees it and falls in love with it, like I did, and hopefully it happens sooner rather then later. I’m also praying for Quinn to get ride of her cold, it’s not fun to be sick, especially in the summer!

Blessings!
Susan

6-18-10

What a busy week we have had! Have you ever felt like you have learned and learned and learned information and felt more and more clueless. That has been the case for me this week.

First lets start out with some fun stuff. Tuesday afternoon we went swimming with Amy and this was such a big deal because it’s the first time Quinn has been able to move all over without any help! The water was a bit chilly and we are use to warm water pools, but after Quinn got use to the water, she had so much fun. She loved to get in the position of getting her legs to lie across Amy and keep tapping her! She is a people person so that does not surprise me at all. I’m thankful for that calm in a week of crazy knowledge.

Let’s get the knowledge out first and end with the other fun things Quinn has done. We got results back from the sleep study, Dr. Quinnlan called me Thursday and said the results are pretty good for Quinn. The study is abnormal, but that is the case with brain trauma and muscle tone most of the time. For it being abnormal, it’s very minimal; her oxygen level was always above 90%, which is great. She would tend to slow her breathing down about 4 times an hour, but he still does not think we should do anything as of now, because her muscle tone is what causes her breathing issues, and when she had a cold it’s going to lead to breathing issues. That is not nice to hear, but it is our reality, so over all, it was a good report. He did tell us to start seeing a Pulmonologist (breathing doctor) and I’ve wanted to do that, so now we will start seeing him as well. Our list of doctors keep growing, but I’m more then thankful to add another one on, and be oh so thankful to have Quinn in my life.

I have also talked to Assistive Technology, Elevator sales people, Real estate sales folks that work with people with disabilities, and after all that knowledge, I feel like I’ve got much more information and yet few concrete answers. I think the biggest thing I heard from an Occupational Therapist who now helps with real estate, and finding homes that can be modified. She talked about how having a single story home can help Quinn get to every room on her own when she gets a motorized chair, if that ends up happening. Following it up by the more restrictions in the house lead to more restrictions for Quinn, which makes it harder for Quinn to reach her full potential. So after fighting to stay here and adapt this house rather then have to move and adapt another house I’ve come to terms with seeing a move as being the smarter more cost effective choice. Granted I’ve changed my mind back and forth, but I’m getting more and more set on a move. It’s exciting and sad at the same time, and thinking of all the work involved is a bit intimidating, but I’m willing to work my tail off to make Quinn’s life as adaptive and positive as I possibly can. I’m thankful for all the work we have done to our house, and I think with a little paint, we will have a home that would be a great house for someone to move into. Past that, I’m thankful for friends who have friends who are architects, and hope to have them help us with modifying a different house. I’m also thankful that this does not have to be done right away, as Quinn is still small, but I do want to get on the ball with this process, so we get things in place before I regret not getting things done in a timely manner.

Onto the fun stuff, Quinn was amazing this week! She was in the pool with Amy for four hours and loved it. Finally around 7:00 pm it started to get a bit chilly and she told me, “all done, brrrrrr” so I love to see that she knows what is going on and can state it. Before we went swimming Tuesday, we hade speech therapy with Stacie and Quinn was amazing. They had a computer that will pick up eye movement and Quinn has had fun with that in the past, but she looked all around the computer and continued to look back up at Stacie instead, and wanted nothing to do with the computer, so they read a book instead and Quinn showed off as usual with Stacie. She was giggling and playing with Stacie when they got to the yellow ducks, however would go limp and quiet with the boring brown cows. She is such a three year old. It’s great to see how she acts with Stacie.

Thursday we met with Diane and Quinn did a great job sorting colors, she loved picking up plastic bugs and putting them in the matching containers. With a little help she matched up the yellow and orange bugs, no surprise there, and refused to pick up the purple ones. It was great to see how with a bit of help from Diane, Quinn was working hard to open and close her hands to grasp those bugs. It was also just as good to see her refuse to do some, because that shows lots of spunk, and I like that just as much! That spunk has gotten her through so much!

Finally at home, she kept telling me “walk”, so I put her in her walker and she became a limp noodle. I got her out and she said walk again! So this time I held her under her arms and she took a good 8 or 9 steps across the floor. I can see how she loves to figure things out, then I see the exhaustion that hits her after she works so hard, so she then took a four hour nap. I’ve said it before but I am blessed to see small miracles every once in awhile, and I’m so grateful for knowing how lucky I am to be a part of Quinn’s life!

Wow, this has gotten long! So I’ll sign off, we have a busy day of swimming and playing today, and then I need to start getting ready to repaint some rooms and get things in order for a sale coming up sometime down the road! Yikes, that makes me a bit nervous, but God keeps working to get us through everything, so I’ve just got to try to give those nerves up to him!

June 12, 2010

We are continuing on working hard with changes so far this summer. In fact Quinn and I both stepped out of our comfort zones and went to a support group and playgroup this week. Madonna Hospital, where we go for swimming therapy, offered a support group for Parents with children with severe acquired injuries. There were 7 of us there with younger children who have had all kinds of injuries including severe burns, but most of us have children with brain trauma. Some from car accidents, sport accidents, and others through situations like Quinn where they had a lack of oxygen to their brain due to another situation. While I was at my group Quinn was at a playgroup in the same building. This was the first time she was in a small group of about 10 kids and lots of adults without me, and I think this is the perfect way to introduce her into preschool. She did start breathing a bit weird, and one of the girls came to get me to ask if it was ok, or if there was something we should do, and I mentioned how she can manipulate her breathing, but it is also a bit of a concern, but in that situation I’m sure she is trying to get a point across. So she was super calm and said she would see how Quinn was, and get back to me if there was an issue, and later when I picked her up I was told when the staff person got back to the room, Quinn was having fun and doing fine. The group’s meet twice a month and one week the focus is on music and the second Wednesday it will be therapy animals. As for me, sometimes we will simply talk, and other times we will learn more about the issues our kids face. I think the experience for both of us was a tad stressful, but mostly wonderful. I cried just a little, but also laughed and felt understood on such a personal level. I would think I would be done crying about our situation, and most of the time do a great job with acceptance, and have even said, this experience has educated all of us and helped us grow as people, so sometimes, and I stress sometimes, I even find myself thankful for the experience, but after that session I realize that this will be a lifetime of learning and most of the time I do a great job of dealing with it, and sometimes I struggle, and I’m O.K. with that, because I have an amazing little girl who helps me get through the emotional times and inspires me all the time. After the group time was over and I picked up Quinn, she was smiling and laughing, so I’m so thankful for that experience for both of us. I’m finding lots of great resources in Lincoln and I’m so thankful we are here!

As for Quinn’s therapies for the week, we learned that Quinn’s favorite color is still yellow, she still works for relationships more then anything else, and if folks around her are stressed, she will pick up on that and stress out as well! We also focused on working on her hands, and now when we roll a ball to her sometimes she opens her hands to catch it. That may sound simple, but her choosing to open her hands to hold something let alone pick it up is a huge deal! Usually she gets excited when we are playing with her and her hands close no matter how hard she tries, so it’s been so exciting to see her open up her hands, and to go a step farther, when we roll one of the balls to her she is catching it and picking it up! That has been a big goal for her, so we are so happy and proud of her! She works so hard!

Well summer officially started for us and Quinn finished the day with grandma on amazing terms. Friday morning Quinn walked from the back room through the entire room, into the kitchen, turned around and walked back, all while holding her head up in her walker! That is such a huge success, as most of the time she dances in her walker instead of really walking all by herself! It just gives me goose bumps! What a great day for her, then she took a 4 hours nap after all her hard work!

I am so excited to sit in on her therapies again, and really get to work with her on her skills, she is usually the most successful in the mornings and I don’t get to see her at that time as often as I’d like with school, so I’m thankful for this summer time. Our summer is going to be busy, like this week we have one or more meetings with therapists, doctors, or someone about Quinn every day, as well as fun trips to the pool and park, so we are going to be busy! Good, but busy!

We start the week out with a visit from Assistive Technology to look at the house, so please say some prayers for us, we start looking over the house for the remodel to figure out if we can add on and modify, then we start trying to get an architect on board! I’m a bit nervous and don’t know what to expect, but have lots of ideas! So the process is going from my head to the drawing boards! I think it’s going to be a bit over whelming, but I’m excited for possibilities, it seems like we have been waiting for this for such a long time, and now I’m getting a little nervous.

So blessing to you, thanks for reading and I’m going to go clean and play the day away!

June 3, 2010

“Change is the essence of life, be willing to surrender what you are for what you could become.”

Wow change! I found this quote and liked it. Sometimes change is so hard to accept, but at the same time we have to follow our paths, and hope and pray they help us continue to grow and improve our lives and the lives of the people around us. Goodness, that is some deep thinking for the last day of school.

Watching Quinn change from sleeping to an awake state is totally amazing and one of my favorite times of the day. She is so peaceful and angelic when she is sleeping, and then she starts to wake up and stretches. This time is simply magical, as she does not have any tone, and a this moment, you would not know how much she has to will her body to move. Her movements are so fluid and easy. Her eyes open and adjust, she continues stretching, and then the dreaded tone fills up her body. I don’t understand it, but the movement of her arms that were so easy have changed into restricted and jerky movements that she has to work so hard to control. The ease in her body changes and gets tense and frustrating. Then I see her start to work with her body, and although it is not fluid and easy, I see her will power and strong work ethic come into play to help get the parts of her body she can control to relax and find a middle ground. Wow, watching that change is so inspiring and frustrating at the same time. I’m staring to feel that way about change in general. Sometimes it is so hard, while it can bring about many amazing feats, as is shown by the amazing things Quinn continues to change within her body and mind.

Change –
1. To give a completely different form or appearance to; transform: changed the yard into a garden.
2.To exchange for or replace with another, usually of the same kind or category: change one's name; a light that changes colors.

Lots of changes going on for us! Actually us, and many people I know right now! Change is bitter sweet!

Changing from one school year to another. This was the last day that I will have gone to school and Quinn would stay home. Sure there will be meetings and classes and such, but this is the last school day. She will be in the excite program next year where a bus will pick her up and take her to school every day, then take her home or to the babysitters. It was the last day I will work with a few dear friends, and many wonderful students. I can only hope and pray we stay in touch.

Changing from one sitter to another, then another, then another! We want to Thank Virginia for all her work over the last few years! She is amazing and I know God brought her into our lives when we needed her so much. We are so thankful for the love she showed Quinn and our family! We want to thank the Grandma’s for filling in here and there when we have needed them, they are wonderful women and so good with Quinn. We are also looking forward to spending more time with Chrissy! Yes, Chrissy is Quinn’s old therapist who loves and understands Quinn and who Quinn in turn loves so much, and she has stepped up to watch Quinn during the day when she is not in school. Annette is also on Quinn’s s list and is willing to watch her during the summer when I have a meeting here and there!

Changing the house, or at least getting in gear for it. We have an appointment on the 14th to look things over, and I’ve got a few friends who are working hard to help us find a good architect, so lots of promising aspects ahead on that front. As well as some cosmetic work, I’m ready to get out the paint and do some changing on a smaller level as well! John is not a huge fan of change and would prefer white walls and every thing in the same place, so this change for him might be a bit harder, but for Quinn he is more then happy to work though that change.

Changing friendships - As I've been thinking so much about changes lately, I've thought back to the changes in friendships I've had over the years. I've got a handful of friends who I still talk to from when I was small, then I've had friendships that I thought I would have forever, then my divorce happened and I lost a few, and then we had all the health issues happen with Quinn, and again I lost friends that I thought I would have forever, yet change continues to happen, and new friends come into our lives, who bring understanding and knowledge. It's crazy how the world works, and I've said over and over, I don't understand why things happen, but I'm sure thankful for my faith to help try to guide us through this crazy world. I will continue to love my friends and family, and do my best to accept the changes that continue to happen.

Changing – I almost put a picture of someone changing Quinn’s pants, but I thought better not to, but on that topic, she is starting to show signs of potty training in the sense that as soon as she is wet or what ever, she is letting us know that she needs to be changed. That is a big deal. It’s also been a big deal when someone leaves or gets home, she is doing better and better and naming the person who just got here, especially mom and dad. I think that is wonderful! Change can be so powerful!

Changing times for therapy appointments. With school coming into the realm of happening sooner rather then later, we have to work on finding times to get her therapies in there as well. I’m hoping we don’t loose to many of our therapists, as she has such a great relationship with a few of them right now, and how she loves the water and the relationships. Talking about that, when school starts we loose our in home therapists that come see Quinn. Jen has been coming to see us weekly, and I have learned as much as Quinn. I’m so thankful we have the rest of the summer to spend with her and I’ve got e-mails and this blog, but having that person who can say I see that improvement and love and hug on Quinn while at the same time helping her work her tail off, it brings tears to my eyes just thinking of loosing that, but again, change can bring even more unexpected joys that we can not even imagine. So I will do my best to be grateful for change, as I let a few tears fall onto my cheeks!

Changing labels – Let me start off by stating I’m not a fan of labels! As an art teacher I see so many kids with labels, who have different learning styles and modifications and they are wonderful and achieve the goals I set along with everyone else. At the same time, I understand how labels can help clue folks in on what things are going on with kids. With Quinn we are changing her label from Developmental Delayed to something else that I can’t remember. Sometimes things that I read that have been written about Quinn in doctor charts or therapists paper work make me so sad. I can’t even type some of the words, they are not hurtful at all, but they are still too hard for me to read or accept. So labels are hard, but I understand to get some of the special care Quinn needs, they are needed! The school needs to know about her possibility of seizures, and her heart condition, as well as the trauma she has experienced. The nurse needs to know about her meds. Adults need to know that she won’t do anything for you unless you work on a relationship with her first. So even though it hurts my heart to read about some of the labels, and changing labels that have been given to Quinn, I also understand their merit, so I’ll keep trying to change and accept the fact that medically some words used to describe Quinn are not words meant to hurt but words meant to help with understanding. So thanks to Jen for working hard on changing her label to fit her better, as well as going a step farther to talk about Quinn instead of just the issues! That helps make my heart feel better.

Whew, that is enough tears for one day! Good tears, but again, change! Wow, as Arnold Bennett said – “Any change, even a change for the better, is always accompanied by drawbacks and discomforts.” I could not have said it better myself!

Blessings, and again, thanks for reading and keeping us in your prayers!
Susan