West Trip - Day 3

Location start/finish: Las Vegas - drive to Hoover Dam - drive to Grand Canyon
Activities: drive, Hoover Dam sight seeing, drive, hike topside South Grand Canyon

The snoozers were harder to get up this morning, but we had another big day planned with lots of fun.

We knew we had a longer time in the car, so we treated the kids to a big breakfast at District Doughnuts, a place they tried in New Orleans last year.

A few HUGE doughnuts and breakfast sandwiches later, we packed up and drove to Hoover Dam.

The drive wasn't too long or out of our way. The dam was impressive, as were the sights of Lake Mead and the surrounding rocks.

The visitor walking area was very hot though - we stayed on the shady side as much as we could!
From there it was a long drive to the Grand Canyon. The landscape was beautiful, so we didn't mind, and the kids really kept themselves quite occupied (even without devices).

Once in the Grand Canyon area, we saw a few elk right away. They were not scared off by the cars!

We checked into the lodge quickly so that we could get onto a few trails before dinner. I don't think you can prepare yourself with photos or videos for the vastness of the Grand Canyon. It is just that big and awesome.

I didn't realize so much of the rim trails would be paved - somehow I missed that in my research, but it really came in handy to be able to use the stroller for Ruby (both to contain near the edges and to cover more ground when she got tired).

The kids and Lehr loved it and took every opportunity to get as close as possible to the edge.

I loved it and am not scared of heights BUT I couldn't be anywhere near them when they did that because it made me so nervous. A few times I even asked them to come back to the trail so that I could enjoy it for a moment and get close myself without worrying about them.

Just amazing.

On our last trail, we decided to cut through an old fire road (away from the edge) so that we could get back for dinner before dark. Halfway in, we encountered a female elk off to the side. No worries - we kept our eyes on her and made sure she saw us before we passed by.

Once past, we saw another straight in front of us on the road. So now we are 'trapped' between the two of them, half of us watching behind us and half watching forward. We carefully eased our way out of there without any confrontation, but not before Lehr spotted a baby hidden in the weeds. (If you ask Ruby about it now, she will still act out us being quiet and then running like crazy...quite funny now.)

This night was Maddux's favorite because after dinner, we all got into bed (at 815!) and fell asleep watching a show on the Food Network - she thought the tv/bed thing was the greatest!

West Trip - Day 2

Location start/finish: Vegas
Activities: hotel pool, walking the strip

We saved this day to be a laid back Vegas day before we hit a bunch of driving. The kids woke up with some prompting...I think the previous day did them in!

The hotel pool was first on our list, but our breakfast took a little longer than planned, so we didn't arrive until just before noon. This was a problem because (as we didn't know), those places fill up quick! We walked around for 20 minutes trying to find a chair to store our stuff at. Finally we gave in and paid for a chair and umbrella. (My cheap self did not enjoy that.)

As you would expect in Vegas, the pool was crazy fun. There were five pools in all, including a lazy river and a wave pool. Ruby was too short for the wave pool, so most of our time was spent in the river, which we all loved.

Even though it was warm, clouds rolled in and when the sun wasn't out, it felt a bit chilly. So we spent a few hours there before leaving to explore the strip (with the intention of returning later).

On the way out of the room, Eli noticed the door to the stairs and somehow he and I decided to take the stairs as high as we could. We were on the 31st floor, and we got up to 45 where there was a midway roof access (no more stairs on our part of the building). Then we ran down, and by run, I mean sprint. It was a lot of fun and Eli really got a kick out of it. As fine as we felt at the time, the next few days though, we could really feel it in our calves...maybe not the best choice before a hiking trip!

Big surprise of the trip: the big kids like 'shopping'. At least for fun souvenir stuff. We walked from our hotel at one end of the strip down to the Bellagio, and we must have gone in and out of half of the stores. They were both very tickled by the Bubba Gump store (and restaurant, but we didn't eat there). Eli purchased his first souvenir there: a Run, Forrest, Run button and a BG ping pong ball.

Eli and Lehr rode the roller coaster on top of NY, NY while the girls and I found an arcade. This was a welcomed sign as the kids kept commenting how all of the slots they saw everywhere looked like video games, so it wasn't fair that they couldn't play them. After we left there, we entered the Hershey store where the big kids were in awe of all of the candy, especially the larger sizes. Maddux made her first purchase there: a Jolly Rancher slushie.

We found a local favorite taco spot on the strip that night and enjoyed a very tasty meal outside. It was another early night as we were all exhausted!

West Trip - Day 1

Location start/finish: Atlanta - fly to Las Vegas
Activities: fly, Seven Magic Mountains, Red Rocks, Delano Hotel

Once we landed and got our rental car (a bigger SUV than we own - The big kids were very spoiled and are now pressuring me to opt for a bigger vehicle when my current one dies.), we drove straight to In-N-Out Burger. The kids had never been and it was lunchtime.

Immediate love - they couldn't enjoy their food fast enough.

From there we drove to Seven Magic Mountains.

Unfortunately the rocks were being cleaned and refinished (and maybe repainted after that?), so there was a work area around the rocks/mountains blocked off. It was still an amazing sight though, and the surrounding scenery was a breathtaking change from what we typically see.

From there, we drove to Red Rocks to get some hikes under our belt.

The park was expansive, so as we drove through we only chose two or three spots to get out and hike.

The big kids tackled many large rocks and had a blast climbing to the tops of them.

Ruby's favorite activity was finding rocks and sand to make 'spaghetti' out of...she maintained this the entire trip.

We ended the day visiting the famous Las Vegas sign before a quick dinner.

so much llama drama

this girl. she can go from being 100% to less than 10% in the drop of a hat. she can spike a 102 fever, and then (after you've hemmed and hawed about it forever), she'll start to drop on her own before you've even poured the tylenol. she will be so puny she can't even stand on her own two feet, then rise to run and jump and dance with no apparent reason for the rally.

this makes it hard - so hard - to know what to brush off and what to bring to a doctor's attention. with eli and maddux, i was less than alarmed when they had the occasional fever or cough...almost every illness before ruby came along was treated with some extra steam in the shower and a nap. but ruby has had more medical challenges than we've known what to do with. the biggest (leukemia, of course) is the one that has made me run to the doctor way more often than i would like. mainly because i just don't know from one illness to the next which ones are 'real'. sometimes she seems so sick and we go in only to be told it's just a virus that needs rest and hydration. then she'll be seemingly fine and spike a random fever at school only for us to find out that she's got strep or bronchitis.

the last few weeks have found ruby a little congested, but all of us have been feeling the effects of allergies and/or poor air quality. so no reason for alarm. until this morning when she wouldn't rouse from her bed. she was awake, but lethargic at best. but even after a breathing treatment and a popsicle (tried to get her to eat ANYthing), she hadn't improved.

so ruby and i were off to the pediatrician when they opened. we were there for four hours. they didn't like her oxygen levels, so gave her another breathing treatment, which actually tanked her oxygen levels, so they wheeled the big O2 tank in. she had another treatment (or maybe saline and a treatment?) with the O2 - she slept through that because her pulse-ox was so low. then some prednisone and more saline (all the while with O2 on her because as soon as they took it off her levels tanked again).

finally, they resigned to sending us to the ER because ruby's levels could not stabilize without being hooked up to oxygen. so much so that they called for medical transport because they didn't even want her off of O2 for the 30 minute drive it would take for me to get her there myself. (all during this four hours, ruby saw every nurse and tech in the pediatrician's office, because they have all seen her so much in the last six years, and they all wanted to check on her. love them.) sidenote: ruby will tell you she rode in the ambulance 'by self'. they gave me the choice of following in my car or riding with them, but if i rode with them i'd have to be up front (not with ruby). so i opted to drive my car because i wasn't sure how we would get home from the hospital at the end without it anyway!

once at Children's, they hooked her up to oxygen and another breathing treatment and ordered a chest x-ray. the doctor was cautiously optimistic that we'd not have to stay the night, but it all hinged on those films. we stayed on breathing treatments and oxygen for what felt like forever and tried to pass the time with tv and books. once they took us for the x-ray, they decided to test ruby's oxygen levels without being hooked up. she said as long as we could keep it above 94, she'd be happy. so they left and ruby and i played the game that if she could cough for me or do deep breaths, i would give her a few goldfish. it was amazing how well she would do with that, and she kept her numbers closer to 98 the whole time. this went on for another long time, ending with the doctor returning to inform us we could go home with another (new) inhaler and some antibiotics to help clear up whatever was trying to brew in her lungs.

back to the whole 'i just can't tell' storyline. after dinner, ruby was dancing with her sister, packing a bag for a sleepover (she does this every day) and acting every bit her regular self. all less than 8 hours after she was hooked up to oxygen and sent off in an ambulance.

she keeps me on my toes, this one!

the best

i have probably blogged about it more than a dozen times, but every day you give me another reason to. maddux, you were born to be a sister, especially a big sister.

the way you dote on ruby, the way you play with her, the way you involve her in everything you do. she is so lucky to have you. the connection you two have is #siblinggoals.

i am so lucky to watch the two of you together. i hope i never stop noticing how amazing your relationship is.

little mama

you are so fun to watch.

every day you come home from school or therapy or wherever we've driven your siblings, and you ask to go upstairs. minutes later you come downstairs with a bag or a box full of toys or clothes. usually you tell me, "sleepover. grandma jim. you stay here." sometimes you tell me you're cooking. usually spaghetti.

today you started a new activity: ironing. you pulled out an old pretend iron and went right to work on gathering a few towels and rags from the kitchen. and because you often accompany your dad to the laundry room where he irons every morning, you knew how to lay out your work in front of you and iron all of the way to the corners.

don't ever change.

shine like a star

this is why we research. this is why we prepare for IEP meetings for weeks. this is why we document all work and analyze all assessments. this is why we overthink every scenario trying to figure out 'the best setting'.

we want inclusion, but what if it isn't the best for our child? what if it doesn't work the way we hear about it working with others? here's the truth that i know so far, at this very very VERY early stage in Ruby's life: the work, the bad days, the struggles, the fight...they aren't the whole story. sometimes there is a shining light in the black hole that feels like our efforts to remind you that some good is coming out of it all.

today we saw that shining light: ruby had her first elementary school performance, lasting almost an hour, and she. rocked. it. as in she sang the songs, stayed in her place(s), did the motions, stood still appropriately, all with no teacher or para helping her through, no assistance needed. couldn't have been more proud... lehr got a bunch of video that i condensed down to about 6 minutes. i will watch and rewatch this on the hard days.

(this video is looong, but it's as condensed as i could bear. my personal 'ruby highlights' are at 0:23, 2:37, 3:35, 5:08, 5:28, 6:05)

self fulfilling prophecy

sometimes i wonder how much of your tendencies, your behavior, is because you're Ruby, how much is because of Down syndrome, and how much is because of how i parent you.

if i'm being honest, i baby you in some ways. i still pick you up (though i swear most of the time that is because i know your stubborn streak will not permit you to move when i NEED you to move), i still snuggle with you until you fall asleep, and i still call you my baby girl. i'm sure an outsider could find a dozen more ways too...

so why, then, am i surprised that you still suck your thumb when you get tired (which is a lot)? it's a habit your brother dropped before he started school, and your sister minimized almost completely by now too. yet you hold onto it, despite all of my best efforts to break you of it.

play that funky music, white boy

since you joined a band, last fall, you and the six other gentlemen that make up '99 Corolla have had this event on the calendar. for you, it was the first 'gig' you have had as a musician that wasn't tied to the church. many hours put into friday night rehearsals and saturday rehearsals and recording sessions and self practice has gone into this band (and this performance). and you wouldn't have it any other way. nor would we....even though it's a far drive, i absolutely love when you have the opportunity to hang out with these guys and work on your craft. in this band you play guitar and sometimes drums. they haven't been able to talk you into vocals yet...we'll work on it. you are the youngest, the rest of the band being made up of all high schoolers, including a senior. you guys have a few covers in your tool belt, but original music seems to be what you guys all want to focus on.

this weekend you all performed at the Taste of West Cobb, which was moved indoors at the last minute because of inclement weather. while i was worried that would affect your sound, it did not. you all sounded as solid as you always do in rehearsal. you performed five songs: three covers and two originals. one of your originals was the best, in my opinion.

oh the places this experience will take you! how grateful i am for you to have this time with like-minded musicians, some leading the way for you in your faith and your craft, all walking through this journey simultaneously.

dance the night away

you had your first middle school dance this weekend. you anticipated it for a month, planning trips to get a new dress and your nails done. you let your best friend and i sway you to pick a dress that was awesome, even though it wasn't your first choice, and i couldn't have been happier as i heard your friend ask you again and again afterwards if you really liked it, because her main concern was that YOU were happy with the choice. you tried on both dresses again at home, affirming your choice and moving forward with shoe selections.

proud mama moment when you asked if you could get a new pair of Vans for the event, ones that matched, but that you could wear afterwards. you speak my language, Maddux, and you are WAY cooler than i was at your age.

even though you complained about my immanent presence at the dance as a photographer for weeks beforehand, you were excited to ask me to join you and the other sixth grade girls beforehand for photos. your group of girls is so perfect right now - i hope you all remember how nice drama-free friendships can be!
at the dance you made the rounds, danced more than you didn't, and made eye contact and came into my personal space more times than i can count. and my heart melted every time. thank you for sharing this awesome first with me, Maddux.