Already March...

I'm not really sure what happened to February. But it is already March. That means warmer days, longer days (we've survived daylight savings, whew!). Here's a quick "what's been up 'round here" kind of post...

 We met some new puppies at the Humane Society while we were there for a birthday party (how fun is that?!)

 We took Parker to meet Payton's doctors and nurses at one of her appointments. Thank goodness Aunt Bo could go help. 

It went from inches and inches of snow, to shedding the winter coats and playing when there wasn't one cloud in the sky this past weekend. 

 We played bingo using M&Ms, and cut Payton's hair big time!

We passed out Valentine's and special presents to all Payton's nurses in the Hematology clinic. 

Parker went to check in with the surgeons at Children's. He's been officially discharged! We celebrated with hot chocolate. Dr. A gave Parker the option of having him remove his tube in the office of having me do it at home. Parker chose to do it at home. So after dinner, we put on our brave, goofy faces and with a little help holding him down, I removed his g-tube for the last time. 

(And not to be left out, Payton made her silly face to go along).

Several people have asked about his stomach. Once the tube was removed, it took about a day and next to no drainage and it has completely sealed itself, so there won't be any need to go in and surgically close the site. The tube was in for just shy of 5 years. His stomach now looks a little like he has another belly button. Between his bowel perforation, other surgery for fundoplication and now this he's got 6 scars on his abdomen. I told him they were good practice ninja scars, which he seems to like. To celebrate the tube coming out, we decided to go out to lunch and go bowling - a major hit!

Not to be out done by her brother, 4 days later, during a regularly scheduled doctor's appointment, we got a surprise. Dr. Lowas said she's doing so good and hasn't needed any transfusions for a while that her picc line could come out. In one quick movement the nurses had it out and she was tube free too. She has just a little spot on her arm from where the tube was coming out. After 4 months of dressing changes and round the clock care of it, she was tube free.

This past weekend Payton and I had a little girl time and got to meet baby Oakley. Payton is now well versed in baby holding and working out her babysitting schedule with Victoria.

After 5 years, having kids without any tubes of any kind for the first time EVER has been a little weird. The closet once dedicated to medical supplies has been cleaned out. It is good, and a little odd, to have to shut off the little voice in my head that was always keeping an extra eye on those tubes. Let's hope everything stays that way.

Also, we're going through some growing pains here - new schedules, new people, new places. If y'all have a few extra happy thoughts, prayers, sparkles, or whatever else you have and wanted to throw a little our way, we'd happily take them.

Life As We Know It

The past month has been a complete whirlwind. Between the twins' birthday, Payton starting treatment, Halloween and day-to-day life, things have been a little more than average crazy.

Thanks to a really beyond wonderful fall, we were able to spend a lot of time, up until the past couple days, outside and enjoying the sunshine.

We spent one afternoon at the zoo with out cousins. And as has been so many traditions, they had their picture taken on the lion statues near the front.

 

There have been a few happy days after school with a piece of Halloween candy.

 

We've hit the closest Scooters. Coffee for me - seriously you can't go wrong with a white chocolate mocha - and muffins for them.

 

 

Payton is doing fine after her treatment. We are going to Children's twice a week for blood draws and monitoring where she marches around like she owns the place. I'm pretty sure I only go because she can't see over the steering wheel to drive herself.  We finally finished a month of steroids this week - YAY!!! Last week she did get a platelet transfusion because her counts were so low. Her blood counts had held steady for a while but have started to drop off again. We added daily Neupogen injections which we are doing at home. She is doing really well with her picc line. She will continue to be monitored for the next couple months to see if her body wakes up and starts doing what it's supposed to. If not, we'll discuss options and see where we go next. But for now, it's a wait and see.

 

 

 

And, for a minute when it was about mom....

I put on my gear, including my necklace with my two P charms for the twins, and ran my first half marathon in Lincoln. It was amazing. Almost better, was Payton asking if when she gets her "tube" out (picc line) if she can run the finish with me sometime. She also wanted to wear my headband and finishers medal when I got home.

 

 



9 days and one treatment done

Last Monday Payton and I checked in to Children's Hospital for what would be a very long 9 days.

Monday night was spent getting settled and prepped for everything that was coming Tuesday. The worst part of our night was the 6 attempts it took to get her IV started. This led to her asking every single person for the next 8 days getting asked by her "what are you going to do to me?"

Tuesday started early with getting platelets to prepare her for getting her picc line. Thank goodness for Madeline, a nursing student, who painted her nails and hung out with us all day. she was even able to go with Payton to the operating room when it was time to do her picc line.  It took them a few tries to get the line just right and placed. She was pretty happy it meant her IV could come out, but she was really loopy for a while when she was done.

Tuesday afternoon as we started running her infusion medicine, they were on the lookout for any kind of reaction and they weren't disappointed. Payton had a hard time tolerating the medicine at the full rate they wanted to run it at. She broke out in some monster hives that started on her face and rolled all the way down before they were done. We had to take a break, slow it down and take a few rounds of Benadryl and hydrocortisone to get it under control. (There were them at a good moment as they started coming out).

We spend a lot of time trying to waste time. Painting, playing, eating pancakes....

After her initial reaction, she did really well and tolerated things with all the medicine. She was a favorite with the nurses as she was quickly scanning her own meds, running the machines, etc. Payton is really a good patient, if you can get past the occasional flare up of attitude from the steroids she's on.

Sunday afternoon got a little long and she quickly was having IV pole races in the hallway with her neighbor, who ironically was named Parker and is also 5. We got to be buddies with him and his parents and they were quickly making the nurses a little nuts.

Monday afternoon and evening they decided to give her blood and more platelets to top her off before sending her home. She took a good nap while we waited around.

When she woke up we got a special visit from the UNO hockey team. We even got a picture with them and her new friend Parker. They brought goodie bags, signed posters, and even tickets to a game in a few weeks. So cool!

After dinner, Molly came to see her to make a special tutu. It was totally a hit. She wants to make them for all the nurses and take them back there (thank you Molly!!!). After Molly left, we took the tutu out for a test spin around the floor.

Tuesday morning we got the official ok that we could go home after some final stuff was arranged. We'd be out shortly after lunch time. After getting blood, platelets, eating dinner and getting some sleep, she was in overdrive. We spent two hours lapping the 6th floor. When the doctor showed up and asked how she was doing she told him "I've been doing this for hours. What do you think?!?!". Thank goodness for a doctor with a sense of humor!

We were able to go down to a special carnival they had in the lobby while we waited for final supplies and orders. It was a life saver at helping fill in some time while we waited, since she knew she was getting to leave soon.

 

Shortly after lunch, I'd done my education with homecare, we had all her scripts and we were ready to roll. After 9 days we were breaking out of there.

 

As we were leaving, she told me the sunshine felt so good and all she wanted to do was go to the library. The first thing we did when we got home was to take a bath so she could be clean and wash off a weeks worth of hospital stuff. She's fine to leave the picc line out, but some friends from my work let me borrow some Edema Wear. It's soft, woven, flexible and acts as a good sleeve to protect it so she doesn't catch it on anything. She was a little nervous about her "tube" in her arm, but then we talked about how now her and Parker have special tubes, and some of her friends at school have tubes, she's ok with it now. That and it means no more pokes for now on a regular basis.

We go back to the doctor on Friday. We'll resume twice weekly labs for the duration. She's on 3 more weeks of steroids - heaven help me. It is a wait and see game at this point it this therapy triggers her body to do what it's supposed to do or we move on to another step.

For all the cups of better coffee, messages, tutus, boxes of sunshine, balloons, and turns sitting with her so that I could step away......thank you.

To Kylie, Danielle, Lynn, Lynette, Kerry, Jess and all the other amazing nurses who take care of both of us for 9 days.....thank you will never be enough. You are now included in a list of nurses who will forever be in our hearts.