4-29-11

Here ye here ye – Quinn was busy with Diane yesterday painting a crown as we talked about the royal wedding happening today with William and Kate.

As is obviously, the moment I got the camera out, Quinn freaked out! She did not want her picture taken, let alone with the painting she created, as she kept pushing it out of her lap.



Finally we had to settle on her not smiling, but not crying, we are learning to compromise already! Oh Boy!

It’s been a busy week. We got out of the hospital on Tuesday; Quinn is now on breathing treatments, which are working great! She also has a few more days of antibiotics. Chrissy took her in to the doctor for a check-up, and he was not ready to sign off for her to go back to school, so we are going back Sunday to hopefully get the OK. We are also missing out on the heart walk this Saturday, luckily John is going to walk for us, with Alexis’s group. Thanks Daddy, for walking for all of the folks with Heart Issues. The other thing we are missing this year is the Lincoln Marathon, at our old house we could go out into our front yard and watch it, but not anymore. I’m going to have to start volunteering to help with it, as the main gal that runs it, teaches at my school.

Well, back to Quinn, she is improving, and doing well enough to go to therapy, for an hour. She did a great job pushing a ball about, and making some choices. Diane asked if she wanted to play with some colorful bug, Quinn replied NO, Diane asked if Quinn wanted to read a book, Quinn replied NO, Diane asked if she wanted to paint, and Quinn replied YES! She still is not doing much talking lately, but when she wants to, she can get her point across! In fact, she has been using that voice to get loud! We have had to ask her to use her indoor voice several times lately, as she is feeling good enough to want to sing at the top of her lungs! Not real words, but a happy loud singsong loud that is music to my ears! Well, good until you are sitting with her at the doctor’s office, then not so much, as Chrissy learned.

We had another meeting for Quinn’s house. So many of the ideas I had in my head have concrete solutions, and a few things I was not thinking about came out at the meeting too. The newest member of our team is BevVan Phillips, and she works as an accessibility designer with Home Access Solutions. We talked about special tables for Quinn, tracks with motors to help move her from one thing to another thing. such as her bed to her chair, or her chair to her shower/potty chair. We also talked about Quinn’s sink, which can move up and down, as Quinn grows and gets different chairs. We talked about faucets, about water levels, about shower heads and hand wands. We talked about door openings, and lifts, even a possible elevator. The two-hour meeting was wonderful, I was so thankful and excited throughout the meeting, and once again after the meeting, I felt nauseous and ill. There is so much involved in a house for Quinn, and there are so many people involved in this. At times I think, if we were simply wealthy, we could just buy something and be done, that could be so easy. Sometime easy is so nice! Instead we are going to touch lives, and be inspired by the people around us. Instead we are going to see a community of people giving of themselves to a 4 year old, who might not totally understand the magnitude of this experience. Instead we are going to make lifetime friends! Delrae and Greg are such wonderful people, we are lucky to have them in our lives. As I meet others who have also said they want in on our adventure, it has been wonderful to see them so excited to meet Quinn and give of themselves in such wonderful ways. So if I put aside my pride, (which I try to do all the time) and open my heart, and share my most amazing daughter (which is also hard at times) with our small part of the world, we will see so much more then a house being built, we get to see the love through the nails, wood, and glass. I think I will learn more about myself through this experience as well as loosing a few pounds, through this process, as my stomach turns into a ball of nerves after meetings are finished, and I think of how much trust and power I leave in the hands of others. I am a very loud self-proclaimed controlling person, meaning that I simply want to be in control. I knew I could never be a substitute teacher, I need my own room, to set my expectations and boundaries for my students, I need to be in charge of Quinn’s meds to make sure they are done correctly, besides nurses, and my mom, with me checking with her, as I was ill, I have always done them. John is the first to say, I want to be in charge of about everything, because that is the kind of person I am. My mom said she wanted to raise an independent girl, and that is true, possibly bordering on excessive, but that is who I am, and knowing that I am not in control of this house is putting me out of my comfort zone. The only blessing is that I can tell the people in charge are very loving, professional, good communicators, and they love Quinn. I can’t beat that, and in fact this might be good for me to learn that I don’t always have to be in control!

As for this weekend, Quinn and I are laying low, trying to get over our colds and relaxing, while John is walking his tail off for the heart walk and the march of dimes both. So we will be at both extremes.
Blessings,
Susan

4-25-11

We are home. A few new meds and we are good to go! Quinn is doing great, and I'm finally done coughing too. Wow, 5 days in the hospital really went by pretty crazy fast! Now we are home and doing good. I'm so glad I came home over the weekend when John was with Quinn and cleaned the house and used a lot of Lysol. So I'm feeling good right now! We are going to try to get a nap and be ready to start our routines tomorrow morning, but I think both of us are exhausted right now!

It's good to be home!

Susan

Happy Easter

Happy Easter! With us being in the hospital, you might think our Easter was not the greatest, but it was actually pretty good. Grandma and Grandpa Nelson came and watched our churches service. Lucky for us, it was on TV. Then the hospital served a nice Easter meal, I did not have to make any of Quinn's meds, which is honestly a break, once in awhile. So the 3 of us, hung out, and took naps, and we still dressed Quinn up in her Easter dress, you can't see it very well, but it is cute as can be. It's been fun to see her getting better, because she is starting to want to hold onto her tubes again. I think it makes her feel like she is in a bit of control of things when she can get her hands on it.
Are you ready for a weird, wonderful story. Saturday afternoon, Quinn's architect and his wife walked into our hospital room. What a nice surprise. I asked if they read Quinn's blog, and came, and Greg replied no. What? We have have only told a few folks besides posting it on her blog. Well, when things were looking bad with whooping cough, and broken bones,(which was not the case) Grandma Martha, sent out a email to some of her prayer warriors, and it got forwarded 3 or 4 times to different folks, and by way of a small world, Greg got a text from someone who got the email from someone who got the email from Martha. Wow, it's so nice to know that prayers work, and crazy that it landed on Greg's phone. I love how when he is with Quinn, he is willing to get right down in Quinn's face and talk to her about getting better. She intimidates some people, which I understand, but not him. They are such a great couple and we are so fortunate to have them in our lives, for so many different reasons.
As for Quinn, it's looking like we might be going home today, maybe tomorrow. She is sleeping so much better, but her cough is still pretty crazy. So we will see what the day brings on.
Blessings,
Susan

4-23-11

Well, Wednesday and Thursday night, Quinn fell asleep in the beanbag, and was sleeping so good, that I carried all of it to her bed! Wednesday night she slept Great! Thursday night was another story!

We are equal opportunity hospital goes. After spending last Sunday at Children's, we are spending this weekend at St. E's here in Lincoln. Thursday night, she started coughing, and got to the point that she was coughing more then anything else, so at 4 in the morning on Friday, we headed to the hospital again. After lots of tests, again, we were told she might have pneumonia as well as being told she has a broken collar bone. What? pneumonia I get, but she has not had any falls or anything, so all day I was beating myself up on how I'm holding her, how I pick her up. What am I doing wrong? Then to top it off, Chrissy told me how there will probably be an investigation to see if there is any abuse in the household. I'm all for that, as I don't want anyone to abuse their kids and if broken bones are happening with any kid, I get why that should happen, but I feel bad enough already, and I know there is no abuse happening to Quinn. So bring it on, but what a hassle this will be. Then they got into maybe she has whooping cough, which is very contagious, and all the people around her will need to be tested, so that will be a mess too. So for most of the day, I was feeling pretty lousy, as was Quinn, who was getting her cough under control, but was definitely not feeling good. Ugg! The only bright spot was that she had good timing, as we did not have school Friday, so I did not have to take time off of work.
Well, the evening got much much much better! Dr. Davis (a doctor in our primary doctors office) stopped by to say, first of all, her collar bone is not broken, there was a shadow on the x-ray, but she if fine and her bone is just fine! YEAH! and it looks like she simply has a mucas plug in her lung, that she had to cough out and that was all the coughing she has been doing lately, and now she is simply trying to get the rest of it out, and get her lung to work right again. Phew! That helped me feel so much better! Quinn also slept good. Coughing here and there throughout the evening while sleeping. Once it was around 3 in the morning, she had no more coughing and slept great, which is what she is still doing! Sleeping so good! Oh, it is so good to hear that things are so much better then originally stated, after all the scares, as well as seeing her doing so well again!
PHEW! Not the weekend I planned, well actually it is in the fact that we were going to rest, but not in the hospital. This gives me time to rest with the nurses doing all the work, and I can't clean the apartment from here, so I guess I really do get to rest too!
So being thankful is my goal for this Easter! Thankful that nothing is broken, thankful for Quinn being strong enough to get the mucas plug out and get her lungs back into gear and thankful for the rest that I know we both needed! Thankful that our little family will be able to spend Easter together, as John will be here soon, and we will probably still be here in the hospital, but feeling good and knowing we will be bringing a healthy girl home soon!
I am grateful, and once again reminded how we have it pretty good, and how much worse it could be! PHEW! Oh, I'm going to have to go home to get her Easter Dress to bring up here, luckly, it's a super soft dress, that she picked out, yellow of course. So she will be styling here for Easter!

Here she is right now, sleeping so good! Praise God! Phew!
Blessings to you all!
Susan

4-20-11

Well a cold has put us in stay home, cuddle, and wake up numerous times during the night coughing mode. Listening to her cough, and then cry after it, because she feels so nasty, is seriously about the worst sound I have ever heard. In fact, Quinn did not make it to school all week, hopefully we get back into gear next week! All in all, we are doing ok, and we are so lucky Quinn is so crazy strong and such a great fighter! I'm so thankful for that! Chrissy has been willing to watch Quinn all week, cold and all, with the help of Annette and Alexis. In fact as you can see, Quinn is not feeling great, but Alexis was trying to keep her mind off of it, by playing UNO. Quinn and Alexis were on the same team, and even won a game! I just love how they play together!

The picture of Quinn and Amelia was from last week, as I would hate for Quinn to get Amelia sick. Ironically both of them were in the emergency room last weekend, for the same symptoms, so they might have shared it with each other, but we can't keep Quinn in a bubble, and she loves to be around all these other girls, so we simply do our best to keep Quinn healthy, while sharing her and being involved with all the people who love us, and we are so fortunate to have a big bunch of folks on this journey with us! So thanks for joining us on our journey :)

I'm looking forward to a calm Easter weekend. It will be quiet and calm, as we will not be traveling to my mom's house, giving Quinn lots of calm, get better time. As well as a few naps for me, so I don't get to grouchy!

4-18-11

A quick update, things are never dull with us! Quinn and I were at Children's hospital Sunday afternoon for about 8 hours. She had a fever of 102.7 and it would not really go down, so after talking to a few folks we decided to be safe and head to the hospital. Who needs spring cleaning when we can hang out with the wonderful nurses. So to make a long afternoon short, after blood work and x-rays and lots of talking, Quinn has a virus. That is good, because it's not worse, but bad because there is not a way to really treat it, as it has to go the course. The good thing is that her blood cells are pretty strong right now, so she can do it!

That has tired me out, as I called Chrissy nearly bawling, because as I was putting a bag of stuff together to take in case we had to stay, I somehow placed my keys in the closet, and spent 20 minutes going crazy because I could not find them. I should have called her earlier to come help me, because right as I was hysterically asking her to come help, I found them! Whew, I need a vacation! I will say after our big day, we sure did sleep good last night!

So I'm saying some prayers that Quinn can get rid of this bug, and get back into wanting to play and learn. An almost 5 hour nap at Chrissy today has to help!
Blessings,
Susan

4-16-11

It’s been a busy week!
Quinn was back working hard at school. Quinn got to paint a few times this week! Sometimes she really does a great job holding her brush, and letting go, while other times she still struggles.

She is having issues with spitting. We are not sure if it is something she is doing on purpose, or not. Sometimes she does great with not spitting, while other times it’s a job to keep her shirt clean and dry. So we are trying to figure things out. I say this, and today she has not been spitting or drooling at all! So I don't know what is going on with her! Four year old's are hard to understand sometimes!

Tuesday we got to get back in the power chair. Again, we could not figure out Quinn, as she did circles, and had fun, and we tried to get her to drive a straight line so bad, and finally she did it, it was going backwards, but she did it. In order to get one, she has to prove that on command, she can drive a straight line, and stop. She can do both, but it takes time. At the same time, she has only had a few hours with it so far this year, so we will just keep working at it.

Wednesday Quinn kept Chrissy busy with a few seizure type activities for over an hour again. So Chrissy was calling seizure doctors and we talked on the phone quite a few times. Thankfully, Quinn worked it out, and was fine for the rest of the day.

Thankfully Thursday was pretty calm, Friday however had Chrissy working like crazy. We got Quinn in to get some blood work done, and after numerous phone calls, Chrissy and Quinn made it to the clinic, where after two sticks to get blood that were not successful, they were sent to the hospital. After getting to the hospital, they got in to the lab and Quinn finally spoke loud and clear, as they were drawing up her blood. “No More!” I don’t blame her one bit! You tell them Quinn! Lately she has not been talking all that much, so it’s good to hear those words! They did get the blood they needed the first time, this time, thank goodness! This is going to give us her seizure meds levels and if we need to increase them or not. As she has grown a bit lately, we will probably increase meds, and hopefully that will control her seizures better. So, I’ve only got a day or so left to take time off of school, so to say that I’m thankful for Chrissy is an understatement! Wow, what a busy afternoon! So having today, Saturday, to just relax, spring cleaning, hang out with family, and watch Quinn walk walk walk in her walker, with a bit of help was just what we all needed! Here is hoping you all find pure joy in the simple things, like we got to today!

4-8-11

Ms. Joanne, Ms. Nadine, and Quinn were playing with chicks, at school. How fun!

Last week, Quinn got to play with chicks at school. I’m glad she got to play with them at Riley. I usually try to get her out to my school to see our chicks, when they hatch, but that did not happen this year, so glad she got to at school.

Quinn’s week was disrupted by a seizure this week. Darn, we were doing so good! It was a small one, but no seizures are good. It was super short and only lasted about 7 seconds, and so we did not have to give any medication to stop it. Basically she was sitting on Ms. Jonie’s lap at school, and got very quiet, then her eye’s rolled up so you could not see her eye balls, and she got very stiff. She got control back, all on her own without any medication to stop it. That is the silver lining on the seizure issue. The frustrating part is that it happened at school, and the folks working with her could tell something was up, as she was not wanting to work most of the morning before it happened, and just closing her eyes, and zoning out. Looking back, I think she knew her body was not working right for her, and she was trying to figure out what was going on.

Seizures are caused by different things: Brain trauma, (which caused most of her issues in the first place, way back when she was 5 months old) along with, lack of sleep, gaining weight, being sick… and other things, in Quinn’s situation, I think it was a little bit of all three. So we are keeping a close eye on her, and I’m going to get an appointment to do some blood work, to see if we need to increase medication doses. Last night, Quinn slept for almost 12 hours (the night before was only about 7), which has got to help. She has a cold again, and is upset about it. In fact at therapy yesterday, she started screaming, not her usual I'm mad scream, but a high pitched, I'm scared kind of scream, after we left therapy, we got lots of thick snot out (gross, I know, but it's the way it is), that helped, as well as a bit of cuddle time with me, and she was just fine. So all in all, minus the hard morning at school, and the cold that is back, big time, we are doing well. Those seizures remind me how lucky we are. We have been doing so great with not having them. So we are going to have a low key weekend, resting and trying to get over this cold. As well as having a bit of fun with a few friends! Sounds pretty good to me!
Thanks for checking in on us.
Blessings!
Susan

1-5-11

A fun short post! Quinn's potty sticker sheet from Chrissy's. Quinn wanted to start a new one, so this one came home! Wow, every sticker makes me smile! Yeah Quinn, and yeah Chrissy for helping Quinn find her way to being so successful!

4-1-11

Wow, to say it’s been a busy week is an understatement. With school, therapy, another cold, and house stuff we have been more then busy.
Monday Quinn got back to school after her first spring break, and as the picture shows, she was worn out after a week with all the Mooks. It was a great week last week! Well school went well, and she loved it as usual. I don’t know if it was going back to school or just being busy, but Quinn still has a bit of her cold. It’s much better then it was, and we are sleeping through the night, and that is a really big deal for both of us, but the snot is still there! Darn!

Tuesday’s therapy was great. Quinn’s teachers were there to learn more about Quinn again! Have I mentioned how grateful we are for them, working so hard to figure Quinn out and how they can support her best! We are very grateful! The session was great! I did not make it until the last 10 minutes but before that, Suzanne and Stacie greeted Quinn with the exciting news that Quinn’s red power chair was back! Quinn has not gotten to drive it for over a year, which is when we got this picture, wow has she grown over the year or what!
I did not have my camera with me or I would have gotten a picture this time. The eye gaze computer was also there! It was a big technology session. Well, Quinn saw the chair and knew what she wanted to do, but answering questions with the eye gaze computer was first. I heard that the girls told Quinn she had to work on the computer first, and then she could drive. So they asked her a number of questions, where Quinn promptly responded yes or no, each time followed by “good bye”. After answering a few questions, she was squirming and wiggling and trying to get up, as well as refusing to look at the screen. How amazing is she. She answered a few questions, just like they asked, and was ready to drive. Well, she finally got into the power chair, and was off. She drove from room to room, with a small amount of help so not to run into people and walls, but Quinn was getting back into the groove pretty fast! She loves to move! It’s looking like we will be getting a power chair sooner rather than later, which also means a van, but if that is what we need for her to be successful, I better start looking into my options! Well, needless to say, Quinn was not excited to leave, but we had a big meeting to attend.

Tuesday night was our big “Quinn’s House, built with love” kick off meeting with the team. We got to Out Post 12 Studio, in downtown Lincoln, and I have to say, I love downtown Lincoln, and this advertisement studio was beautiful! Yes, Quinn has a media group involved in her house, now. Not only a media group, but interior designers, all kinds of folks helping with windows, digging the lot, pouring foundation, building walls, building the garage, and I can go on and on. I had to hold back the tears a few times, as so many folks have been putting so much of their time and hearts into this project. Quinn was not loving being there with a room of adults, I’m sure she was still wishing she was driving her power chair, but she did take the time to give Greg a few big smiles! She loves Greg! This all got started because of our friend Barb, talking to Greg about finding an honest person to help us remodel our old house and it’s turning into a wonderful adventure. I can honestly say that for a good 24 hours after the meeting, I felt a bit weak and ill. I can’t begin to say what an amazing opportunity this is for our family, and to share our journey with our community, watching folks pay their love forward, is overwhelming and amazing at the same time. I also know how many kids need special housing, and I am grateful beyond words how this has happened to us. I'm hoping I can find my words to share our story of hope and hard work with others through this process.

I took the camera along to get a picture of the group, and forgot to get one taken, until most everyone had left. Greg, the mastermind behind this, and Delrae, our interior designer (who we met with for a few hours Thursday evening) are in this picture with Quinn. Just keep checking back with us, as we are going to have an amazing story of love starting to unfold! Digging is scheduled for May 1st, but we have lots to do before that to have everything ready! ☺

Wednesday Chrissy taught Quinn how to play Memory, putting out 4 pairs of cards to match at a time, and I was told that after a bit of practice, Quinn was really starting to figure out what to do! Chrissy also got Quinn to walk 25 steps! Yeah! Sometimes I don’t even think of doing things like playing memory, so I’m so thankful Chrissy is part of our lives to continue educating me on my own daughter! Yikes, that seems wrong, but yet we know how right we have got it! To top that off, Quinn went potty on the potty in less then 2 minutes that day! Yeah! After a great day, Quinn and I went to Omaha to see the trach doctor, continuing to have our regular 2 to 3 week appointment, and Quinn is doing so well, that we don't have to go back for 3 months! Yeah for that too! Quinn is getting tough too, as she did not cry at all, when the doctor was messing with her trach! What a tough girl we have!


Thursday’s therapy consisted of baking pans, markers, shaving cream, and Quinn giggling and totally having fun getting messing! That is new, because I’ve tried this with her in the past, as well as her doing it in school, but today was the day, with Diane’s coaching and the right mood where she was delighted to get messing and move. Quinn loved working, and did a great job working on moving her hand and arm the way she should.

We are looking forward to this weekend, we are going to work on gardening at our church this Saturday morning, which is a bit ironic, as I loved my landscaping at our old house, but the manual labor involved was not one of my favorite things, however, now that I don’t have that, I’m actually missing it, so John, Quinn, and I are going to dig in the dirt, and hopefully leave things looking good, with more dirt in the garden then on the three of us. After a short nap, (I hope) we are going to go help with an Easter Egg hunt with the Easter Seals. I hear we are going to have 13 campers to play with and find some fun eggs with. So if I’m on the ball, we might have a bunch of new pictures to share.

Whew, are you tired of reading yet? I’ve had a few folks comment on how long the blogs have been lately, but when we are busy we are busy! If you are not to tired from reading, we are currently still praying for Matthew to heal, and his family for patients and understanding, for Quinn’s cold to go away, and for everyone involved in Quinn’s house, built with love project! That everyone is safe working on her house, and that we share an uplifting story that can inspire others to figure out what we can do to make our souls happy?

Blessings,

Susan