10-31-10

Happy Halloween!
Quinn's original halloween outfit was covered with glitter, so we had to make some changes, and she could choose between a princess, which I knew she would love, or something a little closer to home right now. She decided to copy Greg our Home Builder, and be a Home Builder. She is loving playing with all the tools, and we are having lots of fun talking about her house that is getting closer and closer to being a real thing. Notice duck had to have the hammer, so she wanted him to be a Home Builder too!

Wow, we have learned over the past few months alone how much work it is to be a home builder! After just an hour being a home builder, she already needed a nap! It's hard work!


Just look at how good she is looking! As John said yesterday, I've seen her smile more today then she has the last 3 weeks. Oh, I had such a hard time coming to terms with a trach, and so did Quinn, but we are both so overjoyed at how the last few days have been going and she is so comfortable, and happy! She is still sore when she coughs and has lots of mucas, but what a great thing this trach is for her. I already see her getting more and more active and can't wait to see where we go from here! We are looking up up up!
Thanks for all the prayers and have a happy halloween!

Susan

10-30-10

This first picture is of Quinn right after getting out of surgery. We were thinking she might have to be on a vent to help her breath for awhile, but she is a rock star and was on room air almost right away in the recovery room. You will see a blue close to her neck, but it is simply humidity, it's not connected and it's not anything crazy, just humidity to keep everything moist so she can heal. Her heart rate, oxygen levels, and breaths per minute were all the best I've seen in weeks and weeks.
Here she is this morning. She had a good night sleep, in fact I did too, it was not lots of sleep, but I think both of us are feeling good today. Quinn's numbers are all up a bit higher this morning. She is coughing a lot, which is hurting her, which is what we would expect. Everything else is looking great. We are going to talk to the docts about different pain meds to help her for awhile, as she is tight and frustrated, but again, if she wasn't I would be worried. It's that balance of wanting her to show us she knows what is going on, and it will hurt, as it was surgery, but a the same time letting her feel comfortable and get lots of rest over these next few days. It is looking like we will be in the Intensive care unit for the next 5 days, just as a precaution, which is fine with me. The biggest issues are for me more then Quinn, as there is not a bathroom in the room, like there is on the 5th floor, so I have to go out to the waiting room to brush teeth and all that kind of stuff. There is one shower on the floor that we have to share, but again, all that stuff is no big deal, because the care she gets here is just great! I'm going to be so well trained before we leave the hospital, as everyone that comes in is sharing this or that on what works for them, and that is nice. I'm thinking I better rest now, because after they turn things over to me, I'm going to be busy, because right now due to surgery, she is pretty snotty, but the color is good, so we are busy with suctioning and all. Oh, right now she finally fell asleep again, and is resting nicely. Thank God, this is going so well! Thanks for all the prayers and well wishes, I appreciate each and every one, and Quinn is just doing wonderful! Life is good!

Oh and a Happy Birthday to Quinn's grandpa Steve today, we decided she was going to keep doing good, in part, just for him!

out of surgery

and doing great! Already on room air, with humidity. Getting a little meds to help her feel better, because when she coughs she is hurting pretty bad, as to be expected. She is so quiet, no loud breathing, and breathing at 100%. She is making me see that this was such a good thing to have done! I'm already thinking I might not sleep well, because I won't hear her breathing, because she is so very quiet. So I'm so thankful for a good surgery and thankful recovery is going so well. Praying that things continue to keep going down this same path.

Susan

in surgery

Quinn is officially in surgery. I started talking to Quinn about the trach, and she got so mad at me, and did not want to talk to me. Then we got a doll with a trach to show her and talk to her about, again, she did not want to look at it or me, or talk at all. So then Chrissy came to be with us during surgery, and Quinn was more then willing to talk to her about the trach, and the doll, and did great! Well, as we can see she still has her spunk, and still loves Chrissy! How lucky we are! Now we are waiting and praying!

10-29-10

Well today is the big day, for trach surgery. Last night Quinn was up well past midnight, and we have been taking her mask off here and there to give her a break, and we wanted to get a couple pictures with her mask and trach free. Granted you will see more when I post some of the professional ones we took at the beginning of the week, but here might be the last ones with Quinn free of any breathing helps. Granted, even after 10 minutes she was starting to struggle, so this is for the best. I just pray that all goes well today and we have a healthy happy girl, who can breath easy by the end of the day.
Blessings
Susan

"Where there is great love there are always miracles." - from Willa Cather'

10-28-10

My amazing wonderful beautiful Quinn, with her halloween mask on, and cute halloween outfit, well her real skirt has tool and glitter, and I figured that might not work well here, so we changed things out and she looks just a cute.
Here she is getting her heart echo, she does not like the goo that goes on her, but I love her spunk, and like to see her fight what she does not like, that fight is so important!
“For with God nothing will be impossible.” - Luke 1:37

Quinn goes into surgery at 12:30 on Friday the 29th, surgery is 1:00. The did a heart echo today, and will do a blood in the morning to make sure she can handle the suregery. It could last up to 2 hours, and then she will be in recovery for an hour. The doctor performing the trach is Dr. Sewell, from ENT Specialists, and works with Dr. Quinnlan, who is who we have seen in the past. I don't have much to go off except he has a great bedside manner, and a very strong handshake, so that has to count for something. I've talked to the anesthetist, as that has been our biggest struggles in the past, and Denise was going to do her research and get a good night sleep, so she is ready to take great care of Quinn, throughout the surgery.

We got a great nap and cuddle in on Thursday evening, from 4 to 7, and we both needed it so much. She looks cute as a button with her pigtails and bows, as well as her beautiful self in general. I had a talk with her about what was going to happen, and she freaked out a bit, then she did not talk to me for awhile, but was very willing to cuddle, which was so good for both of us. Touch is such an important thing.

Well, we will be in ICU for anywhere between 24 hours to a week, then the 5th floor again, to let her heal, then after 5 days and the doctor changes her trach and gives the ok, we, Chrissy and I, and a few family members, will start learning how to take care of everything. After a few days of showing we are comfortable with everything, we will get ready to go home. We are to keep things extra clean, no dust and such, and will probably keep her out of school for another week, to let everything continue to heal, then God willing, we will have our old, healthy, Quinn back, and be able to start playing and engaging in life again, instead of simply surviving. That will be so good.

10-28-10

Trach Surgery is scheduled for 1:00 tomorrow, it should last up to 2 hours, and then we will be in ICU for a week to have things heal and give us the training we need to help take care of her.

Well, I have a book to read, but have not been able to open it yet, my heart just can't do it, but my head will win over sometime soon.

Well, update - I've looked over the book, and it was not bad, I got through it, and am feeling confident to deal with it!


we are trading out the mask for a small hole, and peace of mind, so that will be nice.
We had a few furry visitors this morning, and Quinn was interested, but not super excited about it. She is just so tired.

Well we found out we are going to have a Bivona, TTS type of trach.
http://www.smiths-medical.com/catalog/bivona-tracheostomy-tubes/neonatal-pediatric/neo-tts/bivona-tts-cuffed-neonatal.html
Past that, I guess after Quinn falls asleep and I get some good cuddle time in, I'll have to do some reading and watch a video. Oh, I'm tired and my heart is hurting, but my head knows this is best. I think I need a nap and some Quinn love, along with lots and lots of prayers! Thanks!

10-27-10

Horray for Steriods! After a rough day, and having chaos all around her, she finally fell into a peaceful sleep at the hospital.

Back in the hospital. After getting stable, and getting ready for a ride in the ambulance.

Quinn getting ready for a new adventure in an ambulance
Me following the ambulance. I still am surprised they did not let me ride with her in the back
Pulling up to Children's Hospital
getting settled at Childrens.


Wow, what a busy day we have had today. To start off I had a doctor appointment. A few family members have been going to see doctors a bunch lately, and I’m always surprised to hear how they are there half of the day for a 10-minute visit with the doctor. Today I went in at 7:50, got signed in and was in the room at 8:01, having been told it will be a bit of a wait, as the doctor got hung up at the hospital, so I was thinking OK, he will be a bit late, but at 8:11 he walked in the room, mentioning how he got hung up and was running behind. Yesterday we were at the doctor office with Quinn, we waited in the lounge for about 10 minutes, and in her room for about 10 minutes, then we talked to her doctor for almost 30 minutes right through his lunch break. So I am so thankful for the doctors and service we get here. This morning I was back at our apartment after stopping for groceries by 9:30. To top it off, I found out I’ve lost over 25 lbs over the last 6 months. Lots of hard work, and still a long way to go, but I’m on the right path right now.

Well I got home to Quinn breathing so loud and labored. John was doing a great job with her, but usually these last few weeks at least she is calmer in the mornings and that was not the case this morning. Well, I was all excited to make a few healthy meals to have ready for the next few days, so Quinn got her CPAP machine back on to help her breathing, while I did some cooking, and even that was not helping a lot. So, this next statement shows how weird life is in our world. I decided we needed to go to the hospital, and I was not comfortable driving her to Omaha, but knew that is where we needed to be, I also knew it would probably be our first trip in an ambulance, and so I said a few prayers, did the dishes, packed our bags as I called Quinn’s doctor to let him know that she was having a hard day and just could not calm down, and he called the hospital in Lincoln to have them get Quinn stable, then get the ambulance to take us to Omaha. Well, Quinn got calmed down at St. E’s, and talking about time, we walked in and said who we were, and we had no time in the waiting room, no time in the pretreatment room, and were taken directly to a room, and got a breathing treatment within 10 minutes, and after 3 pokes had an IV with steroids. Steroids are amazing and within a few minutes, Quinn was sleeping peacefully. 20 minutes later, the ambulance was there to transport us to Children’s, or so I thought. I had already talked to a friend, who figured out how to get my car to Omaha, and then was told, I could not ride in the back of the ambulance with Quinn. I thought that was crazy, but with how tired she was, and the fact that it was a male, and anyone who knows Quinn very well at all, knows how much she loves men, so I simple agreed to follow them to Omaha. As we drove we went by a semi truck who was sideways in the ditch, it has been crazy windy here, so I was again reminded with all the chaos we have been challenged with, things could be worse. Well, we got to Children’s, and after another breathing treatment and a bit of observation, and a visit with our pulmonologist, we got a room on the 5th floor, with the possibility of a surgery for a trach tomorrow (Thursday) or possibly if there is not a time to fit it in, then Friday. Talking about timing, they called ahead to Children’s and got her right in, had a breathing treatment ready for her within a few minutes, and after getting the OK, to go upstairs, we were up there within minutes. I tell you, the treatment we have been getting is amazing!
I have to say that my head is 100% on board for this surgery, as Quinn has been working so hard to breath, and looking back I have been so worried about her and stressed out, I know it’s the right thing to do. All the doctors we have been talking to said they would do it if she were their child, and they are scared for her with how she is doing currently, so it is time. My heart on the other hand, is not quite there, and I tear up talking to everyone about it, but as I hear her struggling, it is catching up quickly.

Oh, again she blew me away today. One of the nurses asked her if she was hurting, she said “yes”, then a bit later, she asked her if she was O.K., yet, and Quinn said “no”. Then another 20 minutes later, when she was calmer, I asked Quinn if she was feeling better, and she said “a little”, a little? Where in the world did that come from? How crazy smart is she! Wow!

As I look back, especially since school has started, she has not been her wonderful self. She has been working so hard to breath, that we have not done so many other things. We have not do walker time as much, work on feedings, hear her talking or laughing as much, we just have not had our wonderful bubbly Quinn, and that makes me sad, and ready to do something to get our wonderful happy, healthy girl back, so with a satisfied brain, and a bit of a hurting heart, we are ready for the trach. So we are asking for prayers for surgery to go well, be it tomorrow or Friday, and her healing to go well. It sounds like we will be here for a week afterwards, to let things heal and for me to be comfortable with how to clean, suction, and take care of the trach. So I’m going to have to had a talk with Quinn to be healthy from then on out, as I’ll be out of vacation time. Oh we will figure something out, but I think we will have had our fill of hospitals for awhile.

Oh, if we are doing a poke count – St. E’s – two finger pokes, three iv tries, Two blood draws in her arm, one of them should really count for about 4 by it self. Children’s – taking out the IV as Quinn started crying when we started it up, and two more pokes to get it, Quinn then promptly breaking out into a full body rash, and crying so hard, and within 15 minutes she is now calm, and the rash is almost gone, and the IV is working well, with no complaints from Quinn. Wow, what a crazy day! It’s now 1:30 in the morning, and I’m thinking I really need to get some sleep! So my bedtime prayer – for Quinn and the surgeon, who currently has no idea he is in store for a trach surgery tomorrow (maybe) to sleep well, and wake up feeling good and ready to tackle the day! Maybe just a tiny sliver of that for me to get some sleep as well.

10-26-10

Quinn’s star of Hope! She painted it with just a bit of help! I needed this burst of hope today, as it’s been a long emotional day!
A trach! I’ve talked about one several times, and I’ve had more folks talk to me about it, after reading about it on Quinn’s posts. I think it’s all the negative or inaccurate stereotypes that go with it.

Can people that have them talk? Can they eat? Can they take baths? Can they communicate at all? Do they have to be hooked up to ventilators? Do kids with trach’s have to have a nurse with them at school? Can anyone take care of them when they are not with their parents or does it have to be a nurse? Not to mention the vanity appearance issues, having that thing in their neck. Then what about cleaning? What about cleanliness? What about infections?

Basically for answers, trach's are like bicycles, there are many different kinds, but usually people can talk, they can eat, they can bath and swim, kids usually do have nurse's with them in school, Chrissy and Annette both are still willing to care for Quinn and Chrissy has already figured out state issues and is willing and able to watch her after a little education about what ever Quinn might get. So that is one thing to be thankful for. You can see the trach, but compared to how loud her breathing is sometimes, it will be a wash. Cleaning can be done once a day for the most part, and infections can be an issue, but can be simple and easy as well.

Let me put a different spin on it. Quinn currently has a feeding button, and all it is, is a hole that helps feed her. We could live without it, but we would be spending 3 hours 3 times a day working to get her enough calories, so I did not have that hard of a time with that, as she needs nutrition, and that did not change who she is. A trach is simply a hole to help her breath, instead of fighting so hard, and she could us all that energy to put into improving instead of surviving.

A trach, however seems to have such a weird stigma. I know I am finding I had that negative stereotype of a trach and a person with a trach. I don’t like it, but it’s the honest truth. I’m also finding many other people feeling the same way, yet no one can articulate why they feel that way. The strangest part for me, is that I’ve known two people with trach’s, granted they were both older, and they were full of life, so I should have felt differently, but I’m struggling to change my way of thinking around to the correct views. I’m finding that over the past 4 years, I had a few misconceptions about disabilities in general, and here I have had a daughter with disabilities and still have misconceptions about other disabilities. I’m human, and I’m the first to say that I’m not perfect, I’m sure thankful for Quinn for so many reasons, one of them being the fact that she has opened my mind to so many things, and seeing things for what they are, not the crazy way that they were portrayed in the media, the past, or stereotypes so many of us have for no reason at all.

So things I have learned, a trach is similar to Quinn’s G button, in the sense that it is simply a hole that will help her be more successful. Her G button gives her calories to survive, so we can focus on other things and she can enjoy the food she does eat, rather then forcing calories into her mouth and making it a miserable experience. A trach will help Quinn go from having so many moments of struggling to breath to being able to focus on life and the fun she can have. I think back to my grandmother, who told me on numerous occasions that moments she could not catch her breath were the scariest moments of her life. Dr. Swisher talked about Quinn’s airway as a straw that can collapse when she is sick or stressed, and when she is working so crazy hard to breath. All the work that she is putting into breathing is getting taken away from her heart, lungs, and brain. After lots of tears on my part, I am getting to the point where I am ready and thankful for getting onto the fast track of Quinn getting a trach. I’m not there yet, as the tears are still flowing, but at the same time, I know I have been so stressed lately because I’ve seen Quinn struggling. It has not been all the time, so I kept thinking, she will get better. We just need to get rid of the stressors, get rid of the germs, hold her up in our apartment and not let her out into the world. Then I’m reminded that is not possible. I don’t want to hold her up and not let her experience the world. Then I go to the appearance issues and think, how I don’t want her to have yet another thing to set her apart from everyone else, but her loud breathing is already doing that. So having her feeling good, having her breathing calm and quietly, having her being more successful in her body, having a “necklace” with a hole, that helps her be more successful, is starting to be a no brainer.

Life is not fair in so many ways, but it still comes down to the fact that I still have an amazing little girl, who can be more successful with a trach at this time, and knowing that as she gets bigger, maybe we will be able to get rid of it, but right now listening to her struggle to breath, and see her stressed, it reminds me that if there is a way to help her be successful, then it’s a no brainer. At the same time, why do the tears keep coming and why do I feel like we are giving in, when saying, we want the best for her, giving her peace of mind to breath easy. A number of other family members are still working at getting on board as well. So I go back to my faith, knowing that God has a plan, and we still have Quinn, which I am so thankful for. I have to remember my strength will come from the Lord! It says in Matthew 11:28 ” Come to me, all you who are weary and burdened, and I will give you rest.” So this I pray; God, I know you are my strong tower and you are my peace, and I am accepting this today, even right now. Amen!

I also go back to the poem I shared way back when.

"Welcome to Holland" by Emily Perl Kingsley, about having a child with a disability.

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

10-25-10

I want my mummy! Can you tell we are getting into the Halloween spirit? O.K., so maybe we were just getting ready for the sleep study, but she does have a good start to being a cute mummy!



We were also busy today, painting stars. Grandma Vicki was helping us, as sometimes it’s really nice to have an extra set of hands, but Quinn loved it. She painted and painted. Sometimes she got tired of using one hand and would switch over to her other hand, but she loved it, and held onto the brush very nicely, and was doing a great job looking at what she was doing. It was a great way to spend part of the afternoon.

Well, we made it to fall break. I’ve been learning more about brain trauma. One of the girls from the betterU challenge has over come a horrible car accident in which she sustained a head injury that caused brain trauma. Now, after lots of therapy and time, she owns her own business, she is on a path she did not plan but is making the most of it, and she is amazing. We were talking, and I asked her to give me some knowledge of what Quinn might be thinking or feeling. He biggest bunch of information was things get overwhelming fast and to take it slow and give Quinn lots of down time to adjust to new things. That was what I needed to hear. With all the changes, she is overly stimulated and right now she is acting out because she is trying with all her might to tell us, give me some calm relaxing moments, life is too much right now. So thanks to my BetterU pal, and Quinn’s continued hard breathing and a three day weekend, (technically it will be a week, as it’s our fall break, YEAH) Quinn and I or Quinn and dad, have stayed home and rested and relaxed and played, for the most part. I already see her relaxing and calming down after just three days of calm relaxing time. Sometimes I feel guilty for not staying home with her, but it comes down to the fact that financially I have to work, and at the same time I love my job, and know how lucky I am to have it. These weeks help make up for it a bit, where I can just relax with Quinn.

Today we got 4 year pictures taken, granted she is not 4 yet, but with the way our schedule is going, I’m trying to get as much done this week, as time will allow. Oh just wait until you see the pictures, they are wonderful, Tabi does such a great job with Quinn and is just so patient and artistic. So get ready to see some beautiful pictures soon. If you are in the Lincoln area and need a great photographer, here is her website: http://creativeeyesstudio.com. Trying to give Quinn lots of down time and get things done, it’s a hard battle, as we have lots of doctor appointments, and we finally see one of the breathing therapists at Madonna on Friday, which is very exciting. So when we are not at appointments, therapy or the doctors, we are going to rest, and try to recoup. Today I got to see her breathing so quiet, that is until we got to Children’s Hospital for a sleep study. She was quiet and calm in the car, which was wonderful, and once we got to the hospital, she got so loud, I was a little worried they would tell me we had to admit her, but she would calm down every now and then, which was good to see. She finally fell asleep at the sleep study around 10:00, so here is hoping and praying for good results, or at least better then the last study. Right now she is quiet and sleeping so well. It’s good to see. I have noticed she has been a bit more jerky here and there, I don’t know if it is because she threw up her meds this morning, is just stressed out, or what, but I will just keep hoping for the best, and praying for her to continue to feel good and improve.

10-22-10

Quinn is still bouncing back and forth from breathing crazy loud, to being calm and giggling and doing great! I’ve started to notice her doing great at school (for the most part) and with dad, and acting up with Chrissy and me. I think she is just feeling comfortable with us to complain about all the changes and wanting us to change it back. It’s very emotional based, that is leading to her drying out her throat and in turn inflaming her throat. So I’m glad that she can express her frustrations, and at the same time, when she is distracted, she is doing so well! We are trying melatonin (a relaxing natural medication) to help calm her down just a bit. I’m hoping that will help.

Quinn got to see the fire truck at school this week, and I was told that she gave them the biggest smile ever after they honked the horn. I would guess she was smiling more because of how excited the other kids were, but regardless, it’s good to hear she is doing so good at school, because I’m not seeing that at home as much, unless dad is there.

Talking about dad, John had his surgery this morning. I have not seen him so nervous in a very long time. His blood thickness was not quite right but after a few trips to the doctor and changing up his medications for the week, he was in the correct range for surgery. Thanks to grandma Martha for taking him to the hospital at 4:30 in the morning. I just could not wake Quinn up in order to take him. In fact, I feel a bit guilty, but Quinn and I both went to school. Quinn needs the consistency, and I can’t take a day off just to wait around in a waiting room, especially since I’ve used up so many days of my vacation already this year. John did great and is home and feeling so good. We will see how he is doing after his pain meds wear off. He does not remember having Pastor Lux visit him, or talking to me on the phone, so he is very happy, and here is hoping that he continues feeling so good.

The other exciting news, is we are getting more done with Quinn’s house. I’m getting closer to listing all the excitement, but don’t want to get ahead of myself. I’m going to try to get some pictures of everyone at our next meeting, and by then we might be starting to post pictures of the process starting. All I can say is that it’s going to be an amazing experience, and I am so excited and humbled at the process. God works in amazing ways! As to the meeting, Quinn was almost asleep when they go there, and then she woke up and freaked out a bit, and started breathing so loud and hard. After about 15 minutes and some daddy time, she calmed herself down, and by the end even gave Greg, Barb, and Ken a big smile, and little giggle. I tell you what, she is not an easy kid to figure out lately! I’ll take that over her being loud and frustrated all the time, because that would mean another trip to the hospital. So I’ll be thankful for her quiet moments!

10-15-10

Go Big Red!
Here she is getting ready to cheer on the Huskers! O.K., so maybe after a good long nap. Oh, seeing John there, please say some prayers for John, he goes into surgery this Friday to do some work on his pacemaker, and he is a bit worried about it!


Quinn made it through school the whole week, her breathing is really starting to calm down. Granted she is not totally quiet yet, but she is getting there! She made it through all her therapies, but by Friday night, water therapy was to exhausting, instead she started breathing like crazy, which helps Michelle and I both see that the breathing therapy would be so good for her! I’ll keep praying it goes through!

I think this might be a first that she was feeling good enough to go to school all three days that excite kids had school. We are also planning on cutting down to three days total for a while, until she is ready to handle more. We had a home visit this week. Chrissy, Joni, and Rachel came to our apartment, and we played with switches, and talked about goals, and Quinn showed off a bit which was nice to see.

Duck, as pictured when she was sleeping, is a big part of our lives right now, it seems like he is helping with all the transitions. She is so routine based, and having very little that is the same right now, is frustrating to her, so just having her duck is so nice. I am hoping she can find a couple animals to be her favorites, as it seems like we misplace duck sometimes, but duck is by far the favorite, so we will stick with him! I've found out he washes very nicely too, which is good!

A fun story from school, since I should probably not name names, I’m just going to call him D. D is from what I hear, one of the kids that I just love, who tends to get himself into trouble and can be a bit on the naughty side, but has a heart of gold. He is taking a big interest in Quinn, comment her on her lip gloss (chap stick). Helping take care of her, and play with her here and there. I just love to hear these stories! I have a few kids with disabilities in my classroom and I love to see who is comfortable stepping up to play with them, when it’s appropriate, or even help them with projects. I am bias, with having Quinn, but the kids that step up to be such good role models for the rest of their class, and for that special kiddo, are amazing for me to see. At the same time for the kids like D who can calm down and be so well behaved when tending to Quinn, that is such a big deal for them too! These experiences can change their lives for the better in so many ways. I love to see it in my classroom, and I love to hear about the positive wonderful interactions with Quinn. Kids like Quinn have so very much to offer all the other kids in their class! Tolerance, acceptance, kindness, caring….. it makes my lip quiver and a tear come to my eye just thinking about it.

Quinn’s breathing is getting so much better, her teachers have noticed, and so have all of us working with her. She is not totally back to herself, but having her do so much better, helps me do so much better, so our household is doing so much better, and talking about households, we are down to just the apartment! Thank God! Also down to less then 10 boxes that might be staying with us for the year. Phew! I like that very much!

To finish out, I just watched a show on bullies, and I know I like to see things in a positive light, and always try to find the good in things, but with Quinn, I have not heard any negative stories, at the same time, the school I teach at, I don’t see issues with bullies. If there is a problem, we stop it early. I’ve always had the philosophy that all kids are going to learn in my room. It might be about art, life, or character, they are all important, and the shows on TV paint such a negative light on schools, while I don’t see that at all. We as teachers and parents need to step up and do our job by teaching our kids about doing the right thing, acceptance, and compassion. Start early with interventions, and that saves a lot of issues down the road, that is what we are finding to be the case in our school, so at the same time, I am so thankful Quinn can start helping kids learn at an early age how everyone does have so much to offer. I was sad to see the negative side of bullies and know that is out there, but I am sure thankful I don’t see that with kids around Quinn or within my school. I sure hope that continues for everyone’s sake!

10-11-10

We had such a good day today! After getting started a bit slow, and doing some percussion and massage, Quinn and I were both feeling great! We read books, lounged around and loved on each other, and with how busy we have been lately, we both needed it so much! Well, we did some walker time and yes, she is in her socks and briefs and that is it!



Well, starting in the walker, and is hard work!



Just look at that determination! I love it!


Oh the spark is starting, so I'm cheering for her and she is loving it, just look at that smile starting!


Oh what a proud moment, the cheers and love from me and just look at that pride, she knows how amazing she is! What a fun moment to be a part of!


After all the talk about the trach, I was talking to our therapist at Madonna, and she was telling me about some therapist there that only work on breathing! So we are hoping and praying that we can get doctors (which I think will be more then willing to help) on board, and insurance folks (which might be a bit tougher) to agree to do a week or two of impatient therapy for Quinn.

The perfect examples of her breathing, Saturday she was breathing hard and then she saw dad, and the breathing evened out and she sang and giggled, and had no issues with her breathing. The same thing happened a few times with me on Sunday as well. I know part of the issue is physical with her tone, but I also know part of it is mental, it's how she shares her frustrations and sometimes I'm not sure of anything. I do know that I want to exhaust all of our options before doing a trach, and if that is what we need to do to help Quinn be the most successful, that is what will happen! So we will see?

Ok, the last post said the papers would be signed for the house, but with these new pictures I had to post them sooner then later, as she just made my night! Again, she did not keep her head up for a long amount of time, but she knew just how amazing she was as she was working on holding up her head! So now by this next journal, we should have papers signed and finished! I'm to the point that the only thing left in the house is cleaning stuff and one box of odds and ends. It is clean except for the garage, and I'm hoping to get that done today, and since I'm turning keys in tonight, I guess I better get done, ASAP!

Blessings!
Susan

Sometimes I feel like we are overwhelmed with supplies, special shoes, suction machine, feeding machine, sleeping machine, percussion wand, special chairs, pillows to help prop, and I could go on… I feel like it overwhelms us, only at times, like when we are moving all of it, and I don’t know where it should go!

Then I step back and remember, Quinn, who is simply a sweet, wonderful, amazing, bright, naughty :), loving little girl, who I would do anything for, and in turn she is teaching and inspiring us all the time as well, so bring on the equipment, I’m ready to tackle anything to help her continue to improve and live life to her fullest!

Oh Poop!

No really, Poop, Poop, and Poop! Quinn pooped in the potty! She has been figuring out the potty thing, and doing pretty good, she is doing better for Chrissy then for me, but she is getting it figured out! They were doing the massage machine, and Quinn signed to go potty, and Chrissy asked her if they could wait and go afterwards, and Quinn said, “No, now!” and she went poop in the potty! Wow, I thank God for progress!

This week, Quinn is still breathing hard, on and off, and it is tending to be on, more often! That takes away from so much for her! It takes her out of class and to the nurse, it takes her out of sitting up straight, and we normally have to have her lay on her side, or tummy, to help her calm down, then she can’t see very well! It takes us away from doing lots of therapy, as we are busy situating her to breath well! I wish she would just get over her cold, and get back to her normal wonderful self, as she was there for a few days after we got out of the hospital, and when she has her sleeping machine on, she is super Quiet, but she has her noisy breathing a lot. I’ve been talking and reading more and more about a track. I have to say, I’ve fought and fought getting one, and honestly she has not needed one yet, but this breathing has been going on long enough to make me start looking into it. Honestly I’ve learned a lot, part of that being the misconceptions about it. She can still talk, and eat with it, thanks to a few folks who invented a little deal to go over it. They take a little work, but compared to the work we put into her breathing well during her rough days, it would be simple. We have to make sure it does not get infected, but yesterday I was told, it’s just another hole, kind of like her G button, and it will help her breath easy, so she can focus on other things, again, just like her G button that she gets fed through. That did help me put things into perspective. I hate to admit it, but I use to, way back in the day, wonder why folks go to so much trouble to help kids that have so many issues, but wow, have I learned, ignorance is prevalent, and I was one who did not know, so maybe it’s my mission with Quinn’s help, to educate, what a wonderful opportunity we have! Quinn has so much to offer, she is so crazy smart and full of life, and having a few extra “holes” to help her be more successful, really is not all that bad! Not that I want to rush into anything! As there are negatives, as we are not totally sure Chrissy would be able to watch her, (we are hoping and praying she could), because most of the time it’s a nurse, and she would have to have a nurse with her at school, 100% of the time, which is actually kind of weird, because her breathing would improve, but that extra hole, and rules make it so she would have a nurse, and there would be extra care involved in cleaning and maintenance. Then we would also qualify for a nurse at home if we choose to use that service, and sometimes it might be ok.

I think God works in amazing ways, because this last time we were at Children’s hospital, I was in the waiting room getting some water, and a little boy, who was about Quinn’s age, was running around the table by me, and his grandmother was with him, holding his oxygen tank, which was hooked up to his trake, and he was joyful and giggly, and talkative, and so was his grandma. I’m so thankful for seeing that!!! Quinn would most likely not even need oxygen, just that hole, I believe God had me go out of Quinn’s room and get water at that time, to start getting me ready to accept another possible change! Wow, accepting changes is hard! John and I both have a hard time accepting changes, yet, with God’s help continue to do so with all the grace he gives us, or we sure try hard to do so, and with Quinn’s amazing nature to guide us, how can we do anything but be grateful! But if that ends up happening, I sure hope we can simply have some calmness in our lives for a while, and give us all time to heal and enjoy life and each other!

What else has been going on this week? It is the week for parent teacher conferences, so I don’t see Quinn very much after all is said and done. With all the changes going on, it’s a bit hard on Quinn, then one more change, can set her off. That happened last night. After conferences, I went to my Better U meeting, ( http://www.1011now.com/betteru ) Then I worked out with Gina, and picked up healthy groceries, so got home close to 10:00. Well, I walked in and Quinn was awake, quiet, and in bed, then she heard me, and let me have it. She wined and fussed, and started breathing hard, and basically lost it. I’m quite sure she was letting me have it, as it is our usual routine to snuggle down at bedtime and talk and read, and relax for a bit. It’s actually really nice for both of us. I think with all the changes as of lately and me being gone, and it still being a new place, and her feeling the stress of the last few days, as Grandma Martha was in the hospital, and it was not a planned trip. She is tough and doing ok, but again, she was going to watch Quinn and we had talked about it, and so all those changes and stresses caught up with Quinn! So after she let me have it, she then promptly, within 2 minutes fell asleep. As if she was holding up all her frustrations and exhaustions, and after getting them out could calmly go to sleep! Then we woke up in the morning to have her wake up calm and breathing so well, and then she found out we were leaving and she lost it again, breathing and pouting and throwing a small fit. I can’t blame her at all, because there have been lots of changes, and routine is so important for her, and at the same time, I’m so happy and relieved to have all those emotions in her, and have her get them out! Sometimes I sure wish I could take a day off of work to cuddle her and spoil her, take a nice walk, read a book, relax and have us both take a nice long nap, but I will need to wait until the end of the month, for our fall break, but I’m already looking so forward to it. Instead Chrissy is watching her for the rest of the week, and giving her time to rest and recoup, as she loves school, but it wears her out and she ends up taking 4 or 5 hour naps, so I’m hoping a couple days to rest, will help her calm down and get back to her baseline, breathing, stressors and all.

I’m hoping to have most of our boxes organized and our old house will be cleaned out by the end of this weekend, and officially not be ours anymore by my next post (please pray that all goes well through the signing on the 14th), so I’m sure looking forward to some down time, snuggles, cooking healthy meals, and just having time to relax and breath! I have not had a lot lately and can tell I’m a bit stressed, and that is not good for Quinn to see, as it causes her to feel the same way.

So I am thankful for us having the opportunity to build, and the friends to help us move. I’m thankful for John being willing to work so hard, even though he ends up hurting himself, but his work ethic is so good. I’m thankful for Chrissy being willing to watch Quinn longer on conference nights, and Annette for helping out! I’m thankful for our new apartment that is working out ok, and they have already gotten handicap stalls out front of our apartment for John and Quinn. I’m thankful for Quinn being able to verbalize her frustrations, and me being able to calm her down! So I will continue to be grateful for as much as possible, but I’m sure looking forward to some uninterrupted Quinn time, lucky for me we have fall break at the end of the month, oh how I’m looking forward to that!

Phew, this one has gotten long!
Blessings!

Susan

10-3-10

Well, finally after about two weeks, Quinn got back to school at Riley on Thursday. I was a bit worried that she would freak out a bit, as she is not use to school yet, and she did, just a bit. Chrissy got a call half way through, and went and calmed her down, and she finished out the day. The fun story I heard, is before she went to the nurse, she started breathing loud, and another student in the class, turned around and told Quinn, "Quinn, be quiet, Miss Rachel is trying to read us a story." She did not, and that is why they ended up going to the nurse in the first place. I love it how the kids are just accepting her as a kid, and that's it! If only all of us, could be so accepting of everyone for all our issues! :)

This weekend, we officially moved, we don’t sign paperwork and turn the house over until the 14th, but I wanted a few days to clean things out and move the littler things over, as I know it takes me awhile, but we are sleeping in the apartment, and so far so good. I can tell the move wore us out. First, we had to scramble to find folks to help us move, as a family emergency took a few folks away from us at the last minute. So thanks so much to Chrissy, Ron, Annette, Virginia, Veronica, Elijah, Martha, Harold, Shelley, Nissa, Evan, Vicki, Steve, and Kaleb, being willing to help us out last minute. It was exhausting, as John went to bed at 8:30 Saturday and slept until almost noon on Sunday, and Quinn fell asleep at 4 on Sunday and slept through until Monday morning. I on the other hand have had normal sleep but I did break my fourth toe, which is kind of ironic, because I did the same thing 8 weeks ago when I broke my second toe moving stuff into my school. I’m glad we are not moving anything else for awhile, or I could be in serious trouble!

Well, Quinn knows something new is going on, but is really doing ok. Saturday she was upset, until we moved her to a place where she could see what was going on, and yesterday, she sang and sang as she was sitting in her chair watching me unpack, so that was good to hear. We still have lots of boxes to unpack, and as of right now, John is missing his computer cord, and I’m missing my video camera cord and the TV stand, so that is not horrible! I’ve also decided we will be making more donations of our stuff, as I’m a pack rat, and we just don’t need all this stuff! So the move is really helping me get rid of stuff, as we have already gotten rid of lots of stuff, but still have lots to go! For never wanting to move, we are really making the best of it, and we are looking forward to closing on the house and starting to build soon! Please say some prayers that Quinn continues to adjust well, and the closing of the old house goes smooth! We have already met a neighbor who seems super nice, so we are trudging through, and doing pretty good! Oh, no pictures as I forgot to take pictures as we moved, and I really wanted to, but was to busy moving! So I’ll get pictures up next time!

Blessings!