Friday, February 24, 2017

Make A Wish Trip

Where do I begin? There is no way I can sufficiently describe the amazing awesomeness that was Ruby's Make-A-Wish trip to Disney. The red carpet treatment extended beyond any boundaries I could have imagined when she was given the trip towards the end of her treatment last year. (During Ruby's hospitalization we were asked to apply for a Wish for Ruby, and shortly after she finished treatment, we were given the green light that she was approved for a Disney trip. We chose to wait until this week because of school schedules and our schedules and to allow Ruby to be as recovered from the chemo as possible.)
We flew to Florida on Friday night, where we were greeted by a Make A Wish volunteer escort. She walked us directly to the baggage claim and then straight out to the rental car lot where our car (and car seat) were waiting for us. This already felt like star treatment. We then drove about 40 minutes to the Give Kids The World Village (I will dedicate a whole blog post to that place later!) where we were again greeted by someone waiting specifically for us. There was a to-go dinner in our 'villa', and a volunteer walked me through a brief orientation to give me all of the details we would need for the week.
At our disposal, we had several days of tickets for the Disney parks, Sea World, Universal Studios/Islands of Adventure, and many other 'smaller' Orlando attractions. In addition, we had free parking, free photo services, and some perks at each park. The best perk? The mack-daddy of all fast passes at each park. At Sea World it meant getting preferential seating at shows if we wanted, trays of fish to feed the sea lions and sharks, and first dibs in line for any rides. At Universal/Islands of Adventure it gave us first dibs in most lines, and special parking. And at the Disney parks it was a Genie Pass which gave us preferential treatment for photos around the park (including the photo files), fast pass lines for any rides at ALL times, and front of the line privileges to meet the characters.
For reals.

Our first day we hit Sea World, where the big kids rode their first 'real' roller coaster. They didn't mess around either; they rode one that dangled their feet and turned them every which way, AND they rode it twice! We saw several shows, fed several animals, and even got rained on a little. Eli and Maddux loved the sea lion show most. That night we made it back for dinner and having fun around the village.
Lehr and I agree that the character benefits were by far the best, especially for Ruby. Not only did she get to meet way more princesses and characters than she even had a working knowledge of, but many of them gave her lots of one-on-one attention. Our first encounter was at Epcot with Jasmine. We waited in line for a minute, unsure of how to use our pass (we hadn't done that yet), and then Lehr decided to find someone to ask. That cast member not only brought us to another entrance, but she raced us around the back way to intercept Jasmine walking to her post so that Ruby could meet her in the alley and walk with her. Unbelievable.
And when it came time to meet Elsa and Anna? We were ushered into a back room to find Anna hiding from Ruby, so Ruby got to 'hide and snow seek' with her for a minute. The look on her face when she saw Anna was perfect. (This had such a lasting impression that Ruby looked behind the curtain a few days later when she met Rapunzel.) Needless to say, Ruby absolutely loved meeting these two, as they are the only two Disney characters she really knew about before this trip. The Frozen ride was a big hit with Ruby too, as she had the opportunity to sing along to Let It Go and see her favorite characters while she rode in a boat through the scenes. It was very dark in there, but I grabbed some video anyway to get her audio reactions. We stayed well after dinner, but not late for the fireworks. It was such a good day that we didn't want to push our luck.
The big kids definitely appreciated the benefits of having this crazy fast pass access too. Time after time we walked up and boarded a ride within 10 minutes of arriving, even though the lines for everyone else were estimated to be 50-90 minutes. This allowed us to cover a lot of ground at all of the parks.
The following day we opted to split up, leaving Lehr and Ruby at the village to swim and play while I took Eli and Maddux to Universal Studios and Islands of Adventure. The two parks are right next to each other (they share an entrance and parking deck), and they each have a Harry Potter section. We'd decided to focus on that park of the parks, likely not doing many of the other rides or attractions. It's a good thing too because we got three rougher rides/coasters in a row that messed with my equilibrium so much that I ended up sitting down for about an hour afterward to regain my balance. The kids loved the HP stuff, but around 3 they both agreed we should head home to play with Daddy and Ruby. We even managed to go in the pool before dinner because it was so warm out that day! Oh, and the village had an awesome Halloween party that night that we were able to participate in.
We followed that day up with the Magic Kingdom. Another day full of sprinting around the park, hitting many rides. We counted 15 rides, lots of character meetings, two sit down meals, one parade and the fireworks. Pretty impressive...totally a perk of having that pass! Eli and Maddux and I didn't get to Space Mountain until after the fireworks, but they agreed that it was worth the wait. They LOVED it and it was a great ride to end the day on.
Our last full day was full of rain, so rather than slop through another park, we opted to stay back at the village. Unfortunately we didn't get to golf because of the rain, and we only found one hour of non-rain to swim, but there were plenty of games to play, ice cream cones to eat, and naps to take to pass the time. Oh, and the kids got to ride on horses...Ruby LOVED that! After dinner we participated in a Village Idol show and then watched Toy Story in the theater next door. (Did I mention how cool the Village was?!?) Village Idol is where any/all kids that want to perform an 'act' get up on stage and then get feedback from judges (all positive). We saw everything from jokes to light saber skills. Eli, Maddux and Ruby got up and danced to "Bad Blood" - totally impressed that the big kids would volunteer to do that.
Our flight wasn't until after lunch the next day, so we opted to get out early and hit Epcot for a few hours before heading to the airport. After all, we'll never have the access with that pass again! We saw Elsa and Anna again, rode the frozen ride, and hit Test Track...a great end to a great trip!

Wednesday, February 22, 2017


Still on our trip. Today the kids got to ride on horses, one of them with pink hair. This is the conversation Eli and Maddux had:
Eli: Pink horse. So weird...never seen that before. I wonder if it poops pink?
Maddux: (without missing a beat) Nope, it poops white. I saw it this morning

Monday, February 13, 2017

The Dogsitter

Ruby loves dogs. LOVES dogs.
Forever her favorite dog will be Mossy though. Right across the street, calm, old(er), and as tolerant and patient as can be as she puts up with Ruby's constant's no surpirse Ruby loves her so.
And when her family leaves town for the weekend, Ruby has her all to herself. Ruby will let her out to use the bathroom (and follow her around asking her if she has to go, then clapping for her when she relieves herself), Ruby will feed her water and her food, Ruby will pet her and love on her incessantly, Ruby will walk her, and Ruby will give her as many treats as she wants.

Sunday, February 05, 2017

Pirate & Princess Ball

Ruby has received many gifts, honors and recognitions in the last 18 months because of her battle with cancer. Lehr and I are always humbled and usually feel awkward accepting any of these because it all seems too generous or unnecessary or something. But when I step back and view it from the outside - when I see someone else going through something similar - I want to give the same praise, love, recognition, so we try to be as gracious as possible.
Last night Ruby was one of eight honored guests at the Pirate & Princess Ball, benefiting Team in Training (Leukemia and Lymphoma Society). That meant that she and her family were invited to attend the event for free and be recognized 'on stage' with a gift basket. Lehr and Maddux had other obligations, so Eli, Ruby and I represented. 
I was a little apprehensive about the evening, given it's later start time (7PM) and the fact that I may be chasing Ruby around and wrangling her all night, in heels, but the Ball held a secret weapon unbeknownst to us: Princesses. Shortly after we arrived, Belle and Cinderella showed up and Ruby was mesmerized. She never let them out of her sight all night, and her greeting them for the first time was SO cool. She was humble and quiet - like she was greeting royalty or something. Once the ice was broken, she still gave them mad respect, but she danced and walked and held hands until we left just before 10PM.
When they called Ruby up, she ran through the aisle to the director and even grabbed the mic. No stage fright there! Ruby's former physical therapist was in attendance and was so kind to grab this video of the stunner on stage.

Saturday, February 04, 2017

Father Daughter Dance

Maddux was so disappointed to miss her school's annual Father Daughter Dance last year, so she was very geared up to attend this time around. She even passed up the Princess and Pirate Ball to do so!
Daddy bought her a very cool, very grown up dress for the event and the two of them had a great evening, dancing, eating chicken nuggets, and taking pictures in the photo booth.

Friday, January 27, 2017

Keep On Trucking

We are still happy with the immediate outcomes of Ruby's new school situation. This girl is making HUGE strides in potty training - only two accidents total last week! Her verbal skills are improving daily, and she is happy, happy, happy.

It must be noted that Ruby is still a toddler, so she still has the occasional push or hit at school, and if someone is across the room building a block tower, she must run over and knock it down, very joyfully. But overall, she is adjusting well. She loves the kids in her class, she loves her teachers, and she leaves with a smile on her face every day.
However, the new school schedule means Ruby needs to be awake by 6:30am to arrive on time. This is about an hour earlier than she would wake naturally. While she doesn't seem to mind getting up earlier, it does mean that her body has already become accustomed to early rising, so our weekends are now 6AM wake-ups as well. Boo.
Fitting all of Ruby's therapies into her now more-full schedule has been challenging. We had to drop gymnastics, and fitting in both of her private speech therapists is a constant calendar game, but we are starting a literacy tutor at Gigi's Playhouse this week, and we are looking into private PT and/or hydrotherapy.

Tuesday, January 17, 2017


When Maddux was a talkative toddler, she would say all kinds of funny, crazy, sometimes even insightful things, as toddlers often do. I would chalk them up to "Maddux-isms" and was sad they were a phase that would pass.
If you spend extended time with Maddux, you've probably realized that is not the case. This girl still says some of the most bizarre things. Lehr and I often meet eyes over the dinner table as she's talking, making sure the other person heard the same thing.

Unfortunately, I do not take the time to write them all down anymore, so it's hard to recount for posterity. Last night's gem is still in my mind though. We were having a discussion about the upcoming career day at Maddux's school was taking place: what careers will she hear about, what's her favorite from years' past, etc.
Maddux: Mom, YOU should come for career day! You should come speak! You could tell everyone how you take pictures.
Me: I don't know... I'm not sure..
Maddux: No really! You are a photographer. You have a CAREER! My class would love to hear about what you do. And if you come you get free breakfast!
Me: laugh laugh laugh
Maddux: Seriously mom! They will feed you.
Me: So I should go because of the breakfast? Are they going to give me oatmeal? Or is it eggs? I better make sure I like it. What is the breakfast?
Maddux: I don't know. I don't have a career, so I don't get the free breakfast.

Sunday, January 15, 2017

So How's It Going?

Ruby has been in school for a week now, so I thought it was time for an update. To be clear, she hasn't really been in school for a whole week. Even this upcoming one won't be a full five days. The first week we returned to school on a Thursday, last week we missed the first two days due to icing, and this upcoming week is following a 3-day weekend. But if you add all of that together, she's been there for just a few hours short of five school days.

Ruby loves school. Did I mention that? She yells 'coooool' when we pull into the parking lot each day, and she happily walks with me, backpack on, to the front doors where we wait for her teacher each morning. When I pick her up a few hours later, she is walking in line with her classmates and smiles so big when she sees me. After saying, "Mommy" and coming right to me for a hug, she tries to return to her teachers to go back to the classroom.
The first day, the big kids were so excited to have her at the breakfast table with them. Maddux and Eli insisted on 'first day pancakes' for her, and all three had quite the celebration while they ate. In her day at school, she does centers, speech, story time, circle time (with a calendar and weather and some other daily routines), OT twice a week, and snack/lunch. I get a great report at the end of the day telling me how she handled the transitions and each of these areas. She has yet to 'struggle' with any of them. (Again, she loves school.)

The best part? (Or at least one of the best parts, because so far it is ALL the best part.) She is ROCKING the potty thing. Finally we are able to be consistent all day with her visits to the toilet! She started going at the school on day TWO, and she has consistently gone every day since, rarely wetting her pull-up at all. This means she is wearing underwear more at home and having many days where she is dry all day. Her teacher said to start sending her in underwear to school.

Can we all stand up and cheer now?!?!

It's obviously too early to say if this is a good thing in the long run, but for right now, Ruby's new school is a GREAT thing. Even if just for right now, so many prayers have been answered.

Thursday, January 05, 2017

A Scholar

Eli's middle school operates in semesters instead of quarters. This is new for him, and we were curious if the doubled time in each grading period would be a bonus or detriment. Whether it's the added time or a shift in his study habits or just maturity in general, it appears the semester schedule is a win for Eli: he made honor roll!
All semester long, Eli appeared to be working hard, spending appropriate time on his school work, even when his extracurricular activities were taking up most of his after school time. And while we can monitor his progress through an online app his school uses, the grades weren't finalized until a few weeks ago. Eli received all A's and one B (in grammar). He is frustrated with that B; he struggled so much with that class, watching his grade rise and fall each week.
Lehr and I are beyond proud of him because we honestly did not help him with school work this fall. We discussed early on with Eli that we are here for any help he needs, but he has to ask. While he occasionally asked for us to quiz him on study guides for tests or quizzes, his assignments and projects were completed without our guidance (and knowledge, most of the time!) Life is good.

Wednesday, January 04, 2017

All The Emotions

Sitting here on the eve of Ruby's first day of her new school, special needs pre-k, all a bundle of emotions. The last three nights I've been up at 3AM, unable to sleep. It doesn't take a genius to figure out that it's my anxiety about what lies ahead for us tomorrow morning keeping me up.

I am so excited, so hopeful, so encouraged about what this next step will mean for her, but I'd be lying if I said I wasn't nervous too. Nervous about how Ruby will do with this longer day of school. Worried this situation won't help her reach any more of her potential than her other school. Scared that she will pick up bad behaviors from other kids instead of good ones. Fearful that we're settling for something less instead of pushing her to reach higher. Terrified that we are doing the wrong thing.

So tonight is a Proverbs 3:5 night...