Thursday, October 16, 2014

Parlor Tricks

Ruby's got all kinds of new skills these days. They are not necessarily things anyone but me would notice; most of the things I'm noticing are because I spend so much time studying Ruby and her movements and her speech each day.
On a side note, when Ruby was born, a fellow mom told me that we would celebrate every milestone because of how hard we would see Ruby working for them. I agree with that, but I think that even more we notice every milestone...even ones we didn't necessarily notice with Eli and Maddux. It is so so cool to see Ruby turn the corner on a skill, even more when it's NOT one that I've been directly working with her on.

Ruby does not have any full words, but she says "moh" very emphatically for "more" at least 50% of the time. (The rest of the time it's "mo-mo-mo" or "MMMMM".) And (and this is big) she uses it for things other than food: toys, books. She will also say "mamamama" to me, and "da!" for Lehr. She does say "da" when referencing other things too, but she definitely knows it's "Daddy"; just last night we were playing in her room and she looked up and said, "DA?" when she heard the garage door open.

We are working on "o", "b" and "p" pretty routinely. Ruby doesn't do "o" unassisted, but when I use the tongue depressor to prompt her, she gives me a great "ohhh!" "B" and "p" are hard because when Ruby mimics what my lips do, she gives me a "ma" (instead of "ba" or "pa") sound. But when I help her out, she doesn't fight me too much and I think she's getting really close to getting it!

Ruby's not quite walking unassisted, but she will pull herself up and cruise around, side-stepping and 'front' stepping now. The side-stepping is new and very cool. And when she pulls up to stand using my hands (I don't assist; she just uses me to steady herself), she immediately starts walking forward now, and with a pretty good gait.
Also, her crawling is officially speedy; she's never in sight for more than a few seconds.
We are still working VERY hard on Ruby's pincer grasp and pointing with her pointer finger. Only minimal progress with the point, but her general grasp and control of objects is progressing nicely. The piggy bank toy she's been working with for months is now a task she can do on her own. And some of her other toys are moving through the rotation now because of her new manipulation ability.

The tongue. Oh, how I work on getting that tongue to stay in her mouth. The poor girl has been uber congested for over a month now: between small colds and new teeth (we're up to 6!), she can't catch a break. Obviously a stuffed up nose make mouth-breathing a necessity. But I'm still working with her and I'm happy to report that at least half of the time when I say "tongue in", Ruby pulls it in and closes her lips without me touching her.
One of the biggest things I'm noticing with Ruby is her increasing attention to what I'm trying to engage her with. Because she and I have always spent so much time one-on-one, she stays pretty alert to me, but now she is trying to mimic my actions. She will take the brush and 'brush' her hair, or take a sock and put it to her foot, and her newest one is taking the container of little rubber bands that I use for her hair and putting it (the container) on top of her head. Seriously adorable.

All of this to say, I love this stage. Seriously love this stage. And this girl. SERIOUSLY love this girl.

Monday, October 13, 2014

Halloween Traditions

The kids and I have made a few minimal Halloween crafts and treats over the last few years. Usually the kids want to make cupcake 'spiders', but this year they asked if we could check out Pinterest for somthing new. They opted for individual 'graveyards': pudding cups with crushed cookies and tombstones.
We made a few small crafts for in and outside too: cheesecloth and styrofoam ghosts, spiderwebs for the bushes, duct tape spider webs on a window and 3-D spiders for the walls. The kids have really gotten into decorating this year...they had a blast going to Michael's and the Halloween shop to pick out fun things to use.

Tuesday, September 23, 2014

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) "oooh" 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.)

Sunday, September 21, 2014

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!

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.