Wednesday, September 17, 2014

Beach 2014 - First Half

We have been so lucky to be able to visit the beach every year since Eli was born. There have even been a few times where we've been able to swing both a short spring AND fall visit...these kids are blessed! This year we lined up our trip with the kids' Fall Break from school, and we stayed for a whole week!
The first half of the week it was just our family in the house. We actually knew of 3 or 4 other families visiting Watercolor at the same time, and we ran into them at the beach and the pool a few times, but for the most part, we just hung out with us. Us time, just us, is not something we get a lot of in our everyday life, so we were happy to take a few days for just the five of us.
When we arrived, storms were blowing in, so we only got about 45 minutes at the beach before we went back to the house to get dinner. Ruby LOVED the sand and the waves...she kept crawling right into the water. Eli and Maddux have saltwater in their blood; they can't stay out of the water. We took a family trip to Publix to load up for the week and then Lehr put Ruby down while the older kids and I took an extended bike trip through the trails and over all of the bridges. We ended the night with a family game....LOVE vacation!
When we woke up the first day, it was 6AM...this happens every time we come. The early sunrise and excitement gets the kids out of bed early. Eli and Maddux stayed in the bunk room across the hall from our room, and we asked them to stay quiet until 7AM if they woke up early (in the hopes that Ruby would sleep until 7). Not only did they get up and stay quiet (shock!!), but they played together really nicely, making loom bracelets on the top bunk together (awe!!).

That first full day found us at the beach at 8AM. It was great to get out there before the crowds and intense heat. Eli and Maddux traded off with the Boogie Board, and Ruby ate her weight in sand. We sat and watched dolphins just off of the shore (seriously, no deeper than Lehr had been just a few minutes before) for about 20 minutes. A whole pod of them was enjoying some type of snack because they hung out in the same area for so long. Eventually we went to get lunch and then returned to the pool. At one point the older two were actually enjoying each others' company and floated together in inner tubes next to one another. (GASP!)
More of the same for the next few days: mostly beach with some pools mixed in. We did have bad storms one afternoon, so the kids watched a movie and then Ruby napped, mixed in with Eli napping for about 15, and Maddux joining in for about 10(seconds!). We followed that up with pizza on the beach for dinner. This is seriously a life I could get used to!
Ruby enjoyed the sand and the beach, but definitely tired quickly. Lehr would bring her out into the ocean and she would giggle when the waves would hit her. Then she would crawl on the sand and eat a bite here and there. However, she would eventually stop and just sit; the fatigue would hit her hard. She never fussed, but her eyes would get a little glazed over and she would turn from participant to observer. Most of her naps were in the bike trailer because even when we tried to bring her back to the house for a quality nap, she would crash as soon as we buckled her in.
Ruby's friend, Norah (from Gigi's), was stayed in the house right across the street from us; how crazy is that! The girls hung out a little at the beach a few days, trading sand from hand to hand and mouth to mouth.
Each day when we loaded up for the beach, most of our equipment ended up in the bike trailer, as it has in years past. Lucky Ruby got to ride along with it all. Some days were more crowded than others.
I loved getting some one-on-one with Eli and Maddux; that's not something I get the chance to do very often! The second morning, Eli and I got up when Ruby woke up (6AM) and we went to the soccer field for a sprint workout. He and I traded off leading some exercises in between sprints for about 30 minutes. Then we rode our bikes all over the property, ending at a beach side market where we shared a muffin. The next morning it was Maddux's turn: she helped lead an interval workout mixed in with our bike ride. Good times. We also ended up at the beach market.  Loved loved loved stealing these precious early morning moments with each of my littles!

Tuesday, September 02, 2014

The List

When Ruby was born, they handed us a pamphlet and a book outlining the characteristics of Down syndrome and set us loose. Not exactly the best welcome to a community that is so oh so much more. But now that Ruby has been in our lives for a year, I've been thinking more on those lists, those characteristics, those 'markers'.

Since Ruby was the first person I'd ever met with Down syndrome, I was definitely someone who identified T21 with certain physical characteristics. Because of this, I was probably more scared by these lists...they all seemed like a checklist of what Ruby would be defined by. Now I know this list to be the tip of the iceberg. I came across another blogger recently who detailed the awesomeness of her daughter's 'list'; it is my pleasure to do the same.

Short fingers/hands:
Ruby's baby hands are precious. Who doesn't mourn the day they find their baby's knuckle dimples have disappeared? I think we are still very far from that day...

Upward-slanting eyes: Ruby's eyes are gorgeous almond-shaped blue eyes. They are so similar to Maddux and Eli's, while at the same time being uniquely her own. Those eyes look right into my soul every time Ruby looks up at me. Those eyes crinkle in the corners every time she smiles, which is all of the time. Those eyes take in everything around her when she's in a new environment, learning and exploring.

Low muscle tone: Ruby is strong, of that I'm sure. I mean, this girl was flexing her stomach and trying to sit up from the time she was a month old! But she does fatigue easily, and it does take some extra work to train her muscles to work successfully. Because of this, I get to carry her more (and she MELTS into anyone who picks her up). Because of this, she's taken a little longer to crawl and walk. Because of this, Ruby has given us longer in each stage. Because of this, we've enjoyed every second.

Excessive flexibility: Ruby can put her foot in her mouth and does so on a regular basis, impressing anyone who sees her perform such a trick.

Brushfield spots: These tiny white-spots in the colored parts of Ruby's eyes make them absolutely beautiful and irresistible.

Short in stature: Welcome to the family, Ruby. We all are.

Large and/or protruding tongue: This tongue reaches out and touches her nose when she's especially verbal. It also works so hard in speech and feeding therapy, and it helps Ruby when she says "mamamamama" and "mohr!".


Intellectual disability: So far, the only thing we've noticed in the area of Ruby's ability to learn has been is that she's a quick study. Her physical therapist comments on it routinely, as she masters a skill almost immediately upon being shown the ropes.

Thursday, August 28, 2014

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.

Wednesday, August 20, 2014

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.

Tuesday, August 12, 2014

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.

Sunday, August 10, 2014

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.

Wednesday, August 06, 2014

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.

Monday, August 04, 2014

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!

Sunday, August 03, 2014

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!

Saturday, August 02, 2014

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 :)