3-29

Here Quinn is after a long walk today.
Here are some fun moments with Kaleb - they wish everyone a Happy Easter!

Here are a couple pictures from the zoo. I love how she is looking at Amy!


We had a great end of spring break. We went to the zoo and out to lunch in Omaha with Amy on Friday. It was so much fun. Quinn has had an increase in her seizure medicine, and we increase it slowly over a few weeks, so I can tell that she has been a bit more tired and sluggish. At the same time along with her meds, she is still recuperating from her month of in and out of the hospital times. So she has been pretty quiet and that was the way it was at the zoo. She would sing a bit here and there but was content and happy. The only word she peeped the entire day was as we were leaving, she said “no, no, no” So she is still there and going, we just have a bit of recoup time left.

Talking about her being tired, she has not wanted to walk in her walker much at all, I think it’s due to what I talked about a moment ago, but we will just keep working. I know sometimes I am tired and don’t want to work hard, so we will just give her time and keep motivating her to do her best when she is ready.

Saturday Grandma and Grandpa Rundell came to Lincoln with Kaleb and we played and played. I left the house to go get eggs for us to dye when Kaleb got here, and when I got home the house was full of Easter Eggs and surprises. I don’t know what happened, I guess the Easter bunny must have to go to some houses early. So Kaleb helped Quinn find all kinds of fun treats. They were almost all healthy and fun.

Talking about healthy, I’m going to post this so I keep myself honest. One of the girls at school has a big paper in her room stating how her grandpa would still be with us if he would have taken care of his heart, so she runs to stay healthy. It actually is written better, but that is what I remember now. That along with a trip to the doctor for me has really kicked me into gear, and now I’ve got my sign : If I want to continue to take care of Quinn I need to take better care of myself. So I’m changing a few things in my life because Quinn is more important then anything, and I need to be able to take care of her for a very long time, I hope and pray. So that is my change I am in the process of making.

Well, the rest of the weekend went well. Kaleb still is not totally sure what is going on with Quinn and does not really know how to talk to me about it. At the same time, sometimes I don’t think I’m very good at explaining it either. He keeps telling me how his sister who is 1 can do this or that, and why can’t Quinn. I tried to explain it a few different ways, and he sort of understands it, but I need to keep working on how to explain it in a super simple way. I keep trying to say that she can do so much, but not everything a 3 year old can do. So I need to keep working on that as well.

Sunday we went into school to work for a few hours. I think the highlight of our visit was when Margie came into the art room. She gave her the biggest smile and was so happy to see her, it might be partly due to the fact that I was not giving her all the attention she wanted, but we made up for it with lots of snuggles and kisses. Oh, talking about kisses, I think she has finally given into me now when I start kissing on her she actually turns into my kisses and gives them back to me. It is wonderful. My what was I thinking moment of the week happened when I loaded Quinn into the car and got her in the carseat as we were leaving school. I got her and her bags into the car and started the car and drove off, only to see her wheelchair out of my rear view mirror, still sitting in the parking lot as we left, needless to say I went back and picked it up, but I don’t know what I was thinking. We can’t just go out to the store and pick another one of those up, so I better pull my thinking cap on a bit tighter. That was a first, and I sure hope that I don’t go and leave it again. Yikes!

Monday we got back into the daily grind. I’ve been emotional lately, and I don’t have any good reason. I’ve caught myself crying watching Young and the Restless, (yes, I’m hooked on it and can admit it), Extreme Makeover, Cold Case, reading my book, playing with Quinn as she jabbered to me and anything slightly emotional, I’ve been a mess, so this morning was the same way. I could not let Quinn go this morning, I wanted to stay and cuddle and love on her and I think I told her see you later a half dozen times. Phew, I hope I get myself together quickly because I’m exhausted from being so darn emotional. The day went well for both of us though. Quinn loved up Virginia and at the same time was sure to freak Virginia out a bit too with her breathing here and there, but over all had a good day. My day was also good, getting back into the swing of school and seeing so many of my kiddo’s is always a good thing. So we are back in the swing of things, looking forward to therapies, Virginia’s, and Friday off for Easter. That is not to bad.

Happy Easter! How blessed we are!

3-26

Even though this is technically her 2nd bang trim, I did not get a picture of the actual event last time, so this time I was on the ball. Megan does a great job with her. I appreciate that.

We have had the best week. Not to busy, lots of cleaning and cuddling and therapy. We started off on Tuesday seeing Diana and Staci and that was great. It’s the first time I got to go with Quinn to see Diana and Quinn is working hard for her. They practiced standing up and sitting down and you can just see Quinn work so hard and that is wonderful to see. She still talks more for Staci then anyone.

Wednesday we got signed up for water therapy at Madonna, it’s great to be signed up. Again demand outweighs times, and so we are on the waiting list until this summer, but we are closer to getting in then we were last week. I am going to be in the pool with her and the therapist to really help out, and that will be great so when we are swimming this summer I will know even more things to do to help her out. So that is that.

Thursday we went to see Diane and work on stretches and arm control. Quinn is a stinker and did not want to leave dad to go to therapy and threw a huge fit in the car on the way to therapy. I love it that she knows how to get her point across. I don’t love how she gets so riled up that she starts coughing so hard she almost throws up. I have to be careful to make sure I don’t have a car accident when she is doing that. Well, we got to see Diane and she had to crab to her for a good 15 minutes about how upset she was. Well as they did stretches and listened to music she finally calmed down and then she had some fun playing the drum. She would not even hold onto the stick to play the xylophone, so she got her point across there too.

Well today we are getting ready to go to the Omaha zoo with Amy and I think that will be great! A nice day, a clean house to leave and come back to, and a fun adventure ahead. So hopefully we get a few good pictures today!

Susan

3-22

Wow, we have been busy and I feel like I need a nap as much as Quinn. Well, let me get my brain in line. First, Quinn has a new stress mechanism, now when we are at a doctor appointment she turns her face bright red. This happened twice in the last few days. Meeting with Dr. Swisher last Friday, she was so red he thought she might have a new virus, but once we got home she was fine. Today the same thing happened with the hip doctor, but once again as soon as we left she was fine. As for both doctor meetings, they went well, and Quinn was great. We left both appointments feeling good and glad to see Quinn continuing to improve. In fact the hip doctor said that she is comfortable with waiting to see Quinn again until next December. Yeah for that!

Last Friday we had Assistive technology come to the house to meet Quinn and get us some adaptive devices to help her continue improving and it’s looking good. We talked about new switches and gadgets and I’m super excited. I feel like I have so much to do now to help get ready for a few different ways for her to continue learning. So give us a month and we should have lots of new pictures of Quinn working hard with different gadgets.

Today I finally got Quinn all set up with a meeting for water therapy at Madonna for this Wednesday. I’m so excited about it. They also have a room of technology toys they loan out and I’m looking forward to trying that out too. To top it off I’ve run my battery low on my phone talking to parents, case workers and Assistive Technology architects on adapting the house. I still have a bit of my heart hoping that we get an Extreme Makeover on our house, but I also realize that I have to look into other avenues, instead of sticking my head in the sand and hoping. So in the next 30 days, the architect will come out and look at our house and we will talk about options and if it makes sense to stay here and adapt or move, so I’m excited, but not in a huge hurry. It was a big deal to make those calls, I’ve been putting them off, but finally the ball is officially rolling. We will see what becomes of everything. Wow, I feel like I’ve gotten a lot done and it’s only the first day of our spring break.

Well, I’m looking forward to some spring-cleaning and lots of playing and cuddling. A trip to the zoo later in the week and maybe even a pedicure for me. We will see what happens. I’m thankful for today and the rest of the week, so I better get busy with my cleaning so when Quinn wakes up we can play.

Thanks

Susan

Horray!

Here she is, home at last!
Here she is, last moments in the hospital!

We are back home and Quinn has been singing and singing, I would not say she is feeling great, but she is feeling ok. She is glad to be home, and is feeling good thanks to tylenol. She is still has a ways to go to get back to her wonderful self, but I feel like we really got a few things figured out and that we are finally over the hump of being sick. I'm sure excited for next week, it's our spring break and I will get to help Quinn rest and recoup and we have a few fun excursions at the end of next week if she is feeling ok.

Well, I'm going to go cuddle up with Quinn and try to get some rest, I'm tuckered out. WE have a few new doctor appointments to schedule next week, with a few that are already scheduled for next week, so that will keep us busy too.

still at Children's

Well, we are still at Children's Hospital. Quinn's breathing is now doing great. She has slept better the last three nights then she has slept in a month. She also is waking up without coughing, and that is something that has been happening for the last month as well. The big issue we have right now is poop. We need some, that is a nice way to put it. When she gets stressed out and sick, she does not poop, she also has a temp, so we are working on those issues and then we will get back home, it's kind of looking like tomorrow if everything goes well.

So thanks for the prayers they are working, but we still need them. She has some catching up to do with sleeping and her therapies and all. Lucky for us we are going in the right direction.

back at childrens

Here Quinn turns into a big strong dinosaur when she takes her breathing treatments!
Here Quinn is getting a bath in her bed! That does not happen every day and she loved it!
Well, we are back at Children's hospital. Virginia is amazing and had a Thursday with seizures and a Friday morning with all kinds of breathing issues with Quinn. In fact when I talked to Virginia, I quickly found out we needed to go to Children's to get this breathing stuff figured out.

So Quinn and I went to Omaha, and she even started singing on the way, so I could tell the tylenol she got was working. The hospital is packed full of kids, the ER was packed, yet we felt like the care we got was wonderful and the focus was on us. Again tests came back looking ok. Not Mono, X-rays turned out ok. Now we are waiting for ENT folks and thinking maybe tonsils but still not sure. The hospitalist knows Quinn from her other times here, and Dr. Stoolman is amazing. She is down to earth and really listens and says we are not going home until we get some things figured out. That makes me feel good.

Quinn's actions are back and forth, sometimes feeling so good and I feel foolish being here, hoping that they don't send us home thinking I'm fibbing, then when that tickle happens, she starts coughing and throwing up and her breathing gets all out of wack. Her white count is high, but not Mono high. She is getting breathing treatments and antiobiotics, not the bad kind she is allergic to. We have got some fun toys from the toy room that we are playing with. Some bells, and a projector that plays music and projects pictures on the ceiling.

We did go see the Neurologist Thursday and it actually went well. He said she does have a lot of brain damage, as we already know, but that she is improving and using the parts of the brain that is working. We did some tests on levels of the medication, and are waiting on results. We also did lots of blood work here and we are waiting for those results as well. I tell you her body looks like a battle field, both blood draws they had to do a few pokes and now she has some big black and blue marks. That really is the least of our concerns right now though.

Well we just had a bath, she smells so good, she looks adorable with her pigtails and ribbons, and is resting pretty well, she needs a good nap, she did not sleep very well last night. Well, I am signing off and going to spend some time with Quinn.

Prayers are welcome and I know they work so thanks in advance.

Susan

3-10-10

Well, we broke the Tuesday go to the Emergency room routine. It was a close call though. At therapy Quinn started to be a bit jumpy. The best way to describe it is the startle you get if someone scares you. In a couple hours she had that jumpy movement at least 7 or 8 times. Right now is her ideal time for seizures or weird happenings because of her being sick and tired. Well these same movements happened last year so I was not extremely concerned because they are not seizures. However they are also not the norm, so they worry me. I have to try hard to find a balance because so many things can worry me so much with Quinn, and I can't let it consume me. At the same time I need to do my best to help Quinn be her best. Sometimes I can't find the right balance, but most of the time, we seem to find it, and that is a good place to be. We are scheduled to see the Neurologist tomorrow to get her medication levels tested and find out more about her EEG and have her checked out. I will share how much she has improved over all and that is a big deal. Sometimes what you see is just as important as what the tests show.

She is still a bit on the sick side with lots of mucus and a cough. She is also tired, since that cough keeps waking her up at night. In fact last night she slept with me again. We actually fell asleep at 8:00 and it was great. She only woke up a few times and after some good pats and coughs, she slept pretty good. In fact she slept good enough that I finally slept ok. The best part is since we went to be so early and she was finally sleeping soundly, I got to get up early and get a bunch of things done around the house. That was very nice.

As for stories, we have been laying low. We had a few fun things planned, but she is still so tired, that we decided to rest and relax instead.

So not much to report on. We are planning on getting outside and cleaning up the yard, and Quinn will love it, if the weather is nice enough.

3-4-part 3

We are home. Quinn sang through two errands on the way home, fell asleep in the car soaking in the sun, and is now contently chatting to me as we relax on the couch for a moment. I even opened up the windows, but it's not quite warm enough for that yet, so I'm going to close them again in just a minute, but it's so nice to get a bit of fresh air in the house after being stuck in the hospital for a few days!

3-4- part 2

Two big events:

1) Quinn loves cantalope and has been eating bites of it and asking for more.

2) We are going home. No antibiotics or anything. She is ready and I am ready. I'm hoping we can both take a good nap and go for a walk this afternoon! Whew! What a crazy few days!

3-4

Well, we are still in the hospital but the plan is to go home today. Quinn woke up this morning and did not sleep very good last night, it's a bit to scary for her to sleep good. Well she woke up this morning and has been singing all morning! Yesterdays best story was when I was positioning her to a different pose so she was not on her back all day, I had her facing the window and she wanted nothing to do with it. She wants to keep her eye on the door to see when someone is coming in to touch her. As we were doing that she looked at me and said "home, home" in the saddest voice and it made me happy to hear, but so sad to hear how upset she is. I try to distract her with singing and stories and keeping her relaxed, since she is so tired, but it's just to busy for her to sleep. So we are hoping to get home sometime today. She is getting back to her wonderful self, still a bit of a temp and a bad cough, but nothing I'm not comfortable with dealing with at home. Thanks for the prayers, as Quinn said we are to the point where we are praying to go "home" and have Quinn keep improving!

3-3

Well, we had a nice calm Monday. In fact Monday was pretty exciting and a bit overwhelming for me, as I signed Quinn up for Head Start with Lincoln Public schools. Basically that is preschool for next year. I felt a bit sick to my stomach to think of her in school, but I know she will do amazing and I think she will teach others as much as she learns in school, so I know it will be a good experience. Just another way to show she is growing up, and I’m not ready for her to grow up to fast.

Tuesday morning we woke up at 3:00 am with Quinn throwing up and being full of mucus. She continued to cough for the majority of the day. Virginia was wonderful and watched her, as I only have a few hours left on vacation time at school. Well I got her picked up but wanted to call the doctor and talk about her cough and how hard it was on her. Well after all is said and done we were back in the emergency room to get tests to make sure she did not have a secondary infection from last week. All the tests came back negative, which is good. So they wanted to give her an antibiotic shot and after 20 minutes send her home, making sure she did not have a bad reaction to it. Well to make a very long story short. We learned she is very allergic to Rocephin. I can only compare it to the blueberry girl in Charlie and the Chocolate Factory. She however turned into a tomato. She turned bright read and started swelling up. The staff worked quickly and gave her breathing treatments to help her keep breathing with her throat swelling up. Her eyelids were even super swollen and she could not see for a while. After things started to calm down we were told we would be staying here after all. So she had some Benadryl and finally had a pretty good night sleep all in all. While all the drama was going on I was allowed to stay in the room. I know I have to stay calm or they will make me leave the room, so I was calm, but afterwards the tears started flowing. The moment was to close to home from past experiences where I thought I would loose her. It brought back past memories of rough times and again, made me so grateful to have her and just goes to show me that I love her more then I even know. So now we are cuddling in the hospital bed together writing this and just being thankful! She is amazing and such a fighter. I saw that again last night and I am just so proud of her for her strength. Whew. I’m hoping for a few calm weeks with not so much drama. I’m hoping we don’t get into a habit of spending Tuesday evening in the hospital as well. I’m going to pray that next Tuesday we are safe and sound at home resting peaceful at 10:00, unlike the last two Tuesdays. Past that I’m asking for prayers to get us home safe and for Quinn to continue to improve and feel good.

3-1

Here she is with her Aunt Pam and Great Grandma Charlotte.

Well, we have been busy. Quinn is doing much better with her breathing, but is still struggling now and then. Still much better then when we went into the hospital last week. So Thursday and Friday Quinn went to Virginia’s and to see Diane at therapy. Friday Jen came to our house and found a sound asleep Quinn so we talked about ordering arm braces that will help her work on holding herself up in a crawling position, as well as a trunk brace that will help her hold up her body so she can concentrate more on her head control. It’s like a tight thick elastic undershirt. She will not wear them all the time, just when working out to help her focus on certain muscles so we can isolate and concentrate on things easier. So thanks Jen for working on that for us.

Saturday Virginia, Elijah, Veronica, Quinn and I all went to the Empty Bowls Soup Lunch. It is where local artists create bowls and we pay to get a bowl and soup lunch. It was a bit disappointing because it was not very busy. That is to bad, it raises money to feed local kids who need some extra groceries at home. It was Quinn’s second concert, this one was not too loud, and so she loved it. She loved it even more when Virginia danced with her to the song. After that Quinn and I helped Chrissy with some final moving and cleaning. I asked Quinn if she waned to go downstairs with me or stay upstairs, and she made it very clear that she wanted to go with me. A simple yes or no are nice, but she can get her point across in many other ways as well. I love getting a response and will take what she can give me.

After that Quinn and I went to Sloan Iowa to meet up with my Aunt Pan and Grandma and Grandpa. John did not go with us. After Quinn and I got out of the hospital last week, we came back to a broken down John again. He says he is getting better, but we got home late Sunday, so I have not actually seen how he is doing. So say a few prayers for him, it seems like he is in a revolving door. Where he does well, over does it, and hurts himself, sits around for awhile, gets excited because he is finally feeling good, starts doing well, over does it and…. So I’m hoping one of these times he figures this out and does not push himself and his body starts getting tougher.

Well back to our trip. My great aunt Rosie passed away. It was a blessing for her and harder for those of us who loved her. She has been struggling with her health and has told my grandmother many times how she is ready to meet Jesus. She is a woman I will remember as making me feel so special, as I listened to stories about her, she made everyone feel special. She was loved and loved many of us. It reminds me how luck and thankful I am, to have my grandmother here, and it was nice to spend a day with them. Quinn got to meet many family members over the weekend. We have a few fun stories here and there. First, she did not go to bed when we got there Saturday night. I purposely wanted to get there a good hour before my Aunt and Grandparents, and we got there around 8:00, I was hoping after a calm ride Quinn would fall asleep in the quiet atmosphere, but she is three and can’t miss a thing, so she was wide awake at 9:30 when they got there and after hugs and kisses and lots of love I think she finally fell asleep around 10:30, and then she was up again at 8:00. So I had a good feeling with all the family around and her being tired we were not going to get to show off the Quinn that shows off, but rather the Quinn that curls into a ball and does not show off at all. Well, that is the Quinn most folks saw. It was overwhelming hearing all the family that has been praying for us, and having them see Quinn. So to all of you, thanks for the prayers and sometime in the future when we get over there again I hope you can see Quinn showing off instead of being exhausted.

Well we do have two fun stories. My Aunt Pam is a kisser and Quinn needs to just give in and accept that, but she is standing up for her 3 year old self. After a minute or two of putting up with kisses, she would bring her arm up and push her Aunt Pam away then continue to hold her arm out, showing all of us, that was enough of the kissing. She did it a few different times over the weekend. Yeah Quinn, you keep looking out for yourself, and if you don’t want kisses, you don’t want kisses.

Our other story was when Quinn just entered a new building with new people, that is when she is most on guard, figuring out if it’s safe, if it is a hospital or doctor office. Checking out the new people, she needs a good few minutes to process what is going on. Well a relative came up to her and got right in her face. Put her hands on Quinn’s cheeks and was loudly talking to her. Quinn was not comfortable with that at all, and started coughing and acting like she would throw up. She got her message across loud and clear. Leave me alone! Don’t touch me! I had to smile and just be proud of her for standing up for herself. She did not make a good impression on that relative, but I can’t say I blame her. I’m glad she is standing up for herself.

Well, we got home last night after 11:00 and Quinn did not sleep in the car at all. We got in the house and she started singing and smiling and was so happy to be home. It’s nice to see her expressing herself more and more. I can’t say that she showed that off to many relatives over the weekend, but I sure did see it. Wow, does she ever make me smile. I have to say my extended family did a good job accepting her and loving her up. She was not ready to return the love quite yet, but I will return the love for her while she is still figuring things out.