Ruby Therapy Update

I can't keep up! She barrels through our goals so quickly that by the time I get around to posting about her therapy, the updates are too many to recall.

Ruby's latest in the area of Physical Therapy is her advances towards walking. She is crawling at light-speed; no barriers there. She will climb up stairs very fast too. I still need to stay behind her because if I don't, she may get tired halfway up and sit back (which would mean her falling down), but there is no assistance in her 'up'. She is pulling up on EVERYTHING, which makes the kitchen a very fun place for her. With all of the drawers/hardware available to her, she can play in there while I cook for a long time.

Ruby's latest piece of PT equipment is her "parallel bars". Her therapist brought them to us last week and Ruby had already mastered them before the week's end. She can walk back and forth with no assistance now, and her speed is picking up too. We are working with her to increase her step distance (she only steps about half of her foot length, instead of a full pace in front, as you or I might step).

In the area of eating, Ruby is still only rocking the two small teeth on bottom, so many foods are not possible for her. However, she likes and will try to eat anything I give her. I try to give her a fork food once/day so she can practice her fine motor skills as well. She does very well if I load the fork for her; no problems bringing it to her mouth.

Ruby is still saying 'more', fairly clearly. She gets the "mmmm" sound fine, but sometimes has to be reminded to extend to the vowel as well. We are not any closer to a pincer grasp, unfortunately. Socks on hands still a few times each week, but as soon as they come off, she reverts back to raking/fist feeding.

Nine Lives

Another year gone in the blink of an eye.

You had a great year in third grade; your teacher was a he! Your love for reading was as obvious as ever as we often heard from your teacher in conferences or notes home that you were 'sneaking' reading instead of doing your classwork. The apple doesn't fall far from the tree as that was a constant battle for me as a child. We could not be happier that you are happy to stick your nose in a book. And you've started reading more non-fiction, usually about the civil war. Daddy loves that as he has always been very interested in history. That love for history translated into you dressing up as Abe Lincoln for Halloween.

Best. Costume. Ever.

We had our first bout of lice this year, starting with you. (I think you had half the kids in your class lice-ing at one point.) Smart boy: you opted for a head shave instead of incessant lice combing.

You sat the season of fall ball out. Between some behavior issues and our 'new normal' with Ruby, it was not something we could justify doing. That left great 'holes' in our schedule for after school play and family time at night. It was REALLY nice. This also allowed for us to not be burned out in November, which meant you could try basketball for the first time. You were a quick learner and you seemed to really enjoy the season.

After the holidays you also picked up skateboarding. We bought you a board for Christmas and you've gone to the skate park several times. It's not your strength to take chances with a 'risky' sport like that, but you've done well and seem to really enjoy it.

Back on the field in the spring; baseball for the last time in the Pinto league. You had a great season, catching several line drives and stepping up your fielding ability. More games than not, you were found at first, helping to anchor the team. You even showed some leadership on the field during some of the games, reminding the younger players where the play was as each batter came up to the plate.

As always, summer found you swimming, this time at the height of your age group. Your favorite event at the meet (the IM) is the dreaded for most other swimmers. We took you to county again, and even though you didn't finish in the top 10, you improved your times so much over the summer.

Your eighth year ended with you attending two really cool camps. One was a history camp in town; very opposite of the usual sports and active type camp you normally gravitated towards. You loved it though, and you learned a ton. The other was overnight camp. You (and Drew) went away for almost an entire week. You were definitely nervous when we dropped you off (even more so because you and Drew were staying on completely opposite sides of the camp), but it was obvious through the pictures we saw online that you warmed up quickly and had an absolute blast.

Nine whole years under your belt...where does the time go. I love that you're still so innocent, so naive, so willing and interested in just being a kid. I love that you ask, or beg, to go on one-on-one dates with your dad or I. I love that you still want me to read to you before bed. I love everything about you, Eli.

Snuggle Puppy

If you've had a baby in the last ten years, you've likely received this book as a gift at some point. It's a great, short board book to sing to your kids when they are little. All three of my children have enjoyed hearing, reading and eating that book. But the theme only really applies to one of my children: Ruby.

She is a Snuggle Puppy. Big Time. When you pick her up, she throws one arm around your neck and melts into you. MELTS.

She does not need to be held all day, nor does she have to be rocked to sleep. I still pick her up numerous times throughout our day together, just to steal a hug. (Silly that I say 'steal', because she gives them away so freely.) And Lehr will rock her to sleep almost every time he puts her down at night. Not because she needs it, but because he does. And both of us (mostly him) have been known to go in and pick her up and hold her for a few minutes before we go to bed. She sleeps through it, but there is something about holding a sleeping, snuggly baby that helps everything that happened that day disappear.

Race Car Driver

Ruby LOVES her race car. We got the car when Eli was not yet two, and we've used it for all three kids. They have all given the biggest smiles and the deepest laughs when riding down the hill in the rickety plastic car. Ruby is no different: she will be exhausted and ready for bed, but if you take her out front and put her in the seat, she'll perk right up and beg for more.

Mixed Up Lyrics

A few times a year the kids cozy up in front of the computer with me and pick some songs to make a new CD for their rooms. Eli's are usually pretty predictable, and they tend to flow somewhat: The Revivalists and Kings of Leon or Jack White and The Black Keys. Maddux's tend to be more random, as one might expect. She will put the Frozen soundtrack in with Butch Walker, for example.

Maddux has all of her previous CDs still in her room, and she cycles through them often. She will put them into her player and always be surprised by what music comes out of the speaker, because she forgets which songs she used to like and used to listen to. Yesterday afternoon she put one in that she hadn't listened to in a long time. This particular CD contained music from Bon Jovi, Cake, and They Might Be Giants. At dinner time, she was singing a few songs back to us. 'Livin' on a Prayer' was a jumbled assortment of words, but 'The Distance' was very, VERY entertaining and awesome. Maddux's rendition went like this:

He's going the distance. He's going the speed. She's all alone, all alone in a pile of leaves.

She sang it with a straight face and was genuinely surprised that those weren't the exact lyrics.

Team Ruby

We are SOO excited for the Atlanta Buddy Walk. The NDSS founded the Buddy Walk to help raise awareness and raise funds for supporters. Our Buddy Walk helps fund Gigi's Playhouse, so we are very vested in fundraising. Our goal for Team Ruby this year is $1000. I'm hopeful we blow that out of the water and can set our sights higher next year.

This October we will do a mile or so walk in Centennial Olympic Park with lots of others who know someone, love someone, or support someone with Down syndrome. We've asked anyone who wants to join us to sign up for the walk...the more, the merrier! We've also designed a shirt to wear the day of the walk, or whenever the mood strikes you! We're hoping friends of Ruby all over the United States wear their shirts and start conversations about the reality of Down syndrome.

First Day of School

Second Grade.
Fourth Grade.

HOW?

Maddux and Eli both have larger classes with only one or two names they even recognize among the list of their classmates. Quite crazy, but that's how big their school is.

We kicked off the morning as we often do for special occasions, with pancakes and eggs. The kids were all smiles and they couldn't wait to walk up to the bus stop (several minutes early, of course). Our bus stop has grown so much since Eli's first day of Kindergarten, and now he only has one more first day of elementary school! Maddux and the other girls outnumber at the bus stop, so this year I have suggested heavily to Eli that he be the last to board the bus; ladies first!

Lemonade for Team Ruby

This weekend was awesomeness. It was one of those great weekends that just happened. No plans, no schedules, just neighborhood fun. Friday afternoon found the kids and I playing in the front yard, and then the backyard. Somewhere along the way, we picked up our neighbors in our games. Virginia was talking about a lemonade stand on and off, but it was suggested we hold it over the weekend to pull in more traffic.

Fast forward to Saturday, another awesome outside play-day. One activity just melted into the next and at some point the girls were in Virginia's house making signs for the lemonade stand, which was now slotted for Sunday afternoon. The girls came over to ask me for a picture of Ruby because they wanted the lemonade sale to go for the Buddy Walk.

Can you say 'awesome'?

So just after church on Sunday, we put "Ruby is a Gem" shirts on everyone and went up the hill to set up shop. Virginia had cookies, rainbow loom bracelets, and lemonade. The girls' signs were great, and we even had a tip jar!

Maddux only spilled two or three cups, and only dumped a few handfuls of ice throughout the afternoon. We had LOTS of traffic coming to support the girls. Aunt Megan came all of the way across town, and many friends came from all over East Cobb.

The final count? $130!! Somewhere along the line, Virginia's dad said his firm would match the proceeds too, so big win for Team Ruby!

Ruby's Parallel Bars

Ruby received a therapy tool from her main Physical Therapist this week: a set of parallel bars. Of course, they are tiny tiny, for someone as small as her; in fact, they are made out of a few pieces of PVC. The idea is that she can walk forward while having a support on either side of her, when she need help balancing.

These bars should help her begin to cruise/walk more, as so far she's only taken a few (supported) steps while I prompt her as I hold her hands or her torso. She has not yet shown that she understands forward or sideways mobility on her feet yet.

As of today, the only 'walking' she's done with the bars is prompted by me, moving her hands forward one at a time and slightly prompting her feet. She's taken a few random steps as I push her hands forward, but just barely. However, this set up is a cool one and I am VERY excited to see how quickly she progresses with them.

Bucket List Finale

Here we are at the final week before school starts and our Bucket List is less than half complete. This is to be expected for us though; the last three years have found the same result. We make such a big list and then things like camps and swim team and fun random play dates happen and the big stuff gets pushed to the back burner.

I'm totally ok with that though. I love the unscheduled moments of summer. Going to the pool for a quick dip and meeting several friends there which leads to us staying the entire afternoon. Or playing in the front yard before we run an errand only to remain in the yard, the cul-de-sac, the garage for the better part of a day, drawing with chalk and playing whiffle ball and throwing water balloons.

This year I very intentionally made NO plans for the final week of summer. No camps, no meet-ups with friends, no appointments. This allowed for us to pull out a few big ticket items at the last minute.

Monday night we got a sitter for Ruby and took the big kids to Stone Mountain. They've been once or twice, but just to barely walk around the bottom village area. They've never seen the laser/firework show. They had a great time lounging on the green with us and identifying the Confederate soldiers before it got dark. (OK, that was just Eli....he identified them for all of us.)

Tuesday I took them to the pool for a guaranteed three hours AND told them we could get a treat from the ice cream truck. Of course, that was the one day in the history of our neighborhood that the truck didn't show up. Usually it's there about once an hour! We played with friends and ate lunch and just enjoyed not looking at the clock.

Wednesday I took the kids to the Aquarium. It had been at least two years since we'd been; Maddux didn't even really remember it. We had a lot of fun going through all of the exhibits, and we ended with the dolphin show. Eli and Maddux had never seen dolphins perform in any way, so they absolutely loved the show with it's fin waving and spinning and jumping. Good stuff.

Thursday morning we went to Gigi's for Ruby, and then met Daddy for lunch. That's always a treat for the kids because we get to meet him at his office and walk to a restaurant.  When we got home, I filled up Ruby's plastic pool. And pulled out the tarp for a slip-n-slide. And turned on the sprinkler. Back yard fun, to the max.

We had to do the school Meet-n-Greet on Friday, so that ate up most of our day. By then we were tired from the week's events anyway :)