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.

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!