Braces for Ruby

While we were at the beach, Ruby had a new pair of custom braces (SMO's) being built. She was measured for them before our trip, and we picked them up the other day. I got to choose a pattern for them; I went with girly butterflies because honestly all of the patterns for girls looked the same (butterflies or flowers or hearts). The fit over her socks and then she wears shoes over them. The SMO's (Sure-Steps) are flexible plastic that molds around the 'back' half of her foot and up her ankle. They stay put by way of a velcro strap. The purpose of them is to give Ruby a little more support when she's standing while still allowing her muscles to do all of the work they need to in order to get stronger. We keep them on most of her waking hours, but if I know we'll be in the car for a lot of errands, I usually leave them off. So far, so good; the girl doesn't mind them at all!

Therapy Update

As usual, this girl is a rockstar!

Ruby has gone without therapy for two weeks because of our beach trip, but that hasn't slowed her down at all. She is still walking with her walker and climbing up stairs. She has not gotten better with her walking 'form', but her stamina is increasing daily. She will stand and play for longer periods of time AND she will walk much further before dropping down to rest.

Ruby's speech is improving. She is not saying more words, but she is performing on command more often. Her (prompted) "ohhh" is coming along quite nicely, and she's doing more things with her mouth and speech now: kissing with lips closed, blowing kisses, signing 'please' and 'all done' occasionally, and babbling non-stop. I really think Ruby is signing other things to me all day, but I'm not smart enough to catch on to what her signs are...will work more on that.

Nothing new to report for OT....she and I are still struggling with the pincer grasp and pointing. Much like I felt I was banging my head against the wall with crawling in the months leading up to her taking off, I sometimes feel like Ruby's hand just wasn't built to put her pointer finger and thumb together to grab things. (She will prove me wrong, I know.)

Beach 2014 - Second Half

Our trip was broken into two parts because the first half of the week was just the five of us, while the second half found several other families joining us. The first day of the second half ended up being just us though, and it was definitely my favorite day of all.

As usual, we woke up early and went down to the beach. The weather was amazing, but sunny. This was the day that the kids all got the most sun. No one ended up badly burned, but there is only so much your skin can take! Maddux and I built many sand castles on the beach with Ruby while Eli boarded and boarded the morning away.

Lehr rented a Yolo board before the beach got too crowded and he and the older kids paddled around on it out past the waves. Lehr would say that Eli's chicken bone is larger than Maddux's, but he comes by it honestly (I wasn't getting out there!).

After much fun on the beach, we retired to the pool and grabbed some lunch. It is a tradition of ours to split a fish sandwich at the pool, often followed by ice cream. The kids loved it and were crazy generous with sharing ice cream with Ruby.

That afternoon, Lehr took Ruby home to nap and Eli and Maddux and I rode our bikes to a shady park to play. Total awesomeness. We played shuffleboard for at least an hour (they got along great!) and then we moved over to the playground where we played "American Ninja Warrior". The kids would go to a high bar and swing themselves to see how far they could jump in the sand. (Much like a contestant 'stuck' on an obstacle an making a jump for the landing pad.) We did that forever until Maddux formed and ripped a blister mid-swing. She was fine, but could no longer compete.

The night ended at the beach; the older kids brought boards down and crashed in the waves as the sun set behind us. All of that AFTER we ate pizza on the beach. Perfect day.

The following days were filled with so much more sun, sand, sea, pool, fun, games, bikes.... David and Renee and the kids had a few other families staying with them, and all of the kids had a blast together.

We ended the trip with a full morning at the beach where the kids got to surf and all pile up on the paddle board. I swear they balanced, jumped, fell, sat on that thing in the waves for an hour.

That last day found Ruby a little more tired. She didn't get fussy, but she fell asleep in my arms while I sat at the ocean's edge and slept for almost two hours. Ruby also cut a tooth while we were on vacation, but it didn't stop her from being the biggest rock star ever!

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!

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.