Tuesday, December 02, 2014

Therapy Update

Ruby started crawling just after her first birthday. That milestone was long awaited because we worked so hard on it for SO long with little or no progress before she just took off one day. Walking has been different. Ruby has been pulling to stand and walking with a walker, a gait trainer, and parallel bars (when not cruising) for almost six months. But until a month ago, no solo steps. Finally (on November 10), she took two steps when transitioning between the couch and a toy. Totally unprompted by me; we weren't even 'working'...just playing.
In the last month we have been working to get Ruby to walk holding only one of our hands, to take a step or two between couches, to stand unassisted and balance for as long as possible. Sometimes it felt (feels!) like this work is not doing anything because we don't see progress. But then Ruby will have a day where she shows you that she can do all you ask for so effortlessly, and sometimes more!
Today was one of those days. Ruby's therapist came this morning and we discussed what she's been doing since her last visit. We started with standing; I showed her how I'd been supporting Ruby to stand while she played with a toy. By the end of the 'demonstration', Ruby stood for 58-seconds with no support except one finger on the top of one toe through her shoe.
THEN, we moved over to steps. Ruby and I showed her what she's been doing and I commented how Ruby will take 3-4 steps (not too controlled) a bunch of times in one day and then go back to 'lunging' at structures for several day. Ruby obviously heard me because she showed the therapist and I exactly how much control she has. She took up to four VERY controlled steps, totally upright again and again. Never once did she fall into her ending object.

Crazy girl.

This video was taken an hour after therapy, so less of the control, more of the fatigue, but you get the idea.

Tuesday, November 11, 2014

Ruby-Cube

What an eventful time it is with this girl right now! This is not even a therapy update because these things are not all therapy-driven, BUT our lives are so intertwined with therapy, that honestly every minute of her day is shaped in some (therapy-derived) day. Soooo....update on Ruby or therapy or both, I guess.

Newest tricks for my girl include:
  • Dancing. Not really dancing, but she's not responded to music much until this last month. Now she will stop what she's doing and swing her arm (usually right) straight out in front of her when she hears music playing. Love, love, love.
  • Standing Unassisted. Really. She has been letting go of whatever support she's used in the standing position for quite some time, but lately she will 'climb' up one of us when we're down on the ground and then right herself to a standing position. She pushed herself to standing from Eli's knee the other day and he was SOO excited.
  • Walking. Wait...what? OK, not really. BUT she took her first two (totally unassisted, totally independent) steps this week. At least three separate times in the same day too! 
  • Eating Unassisted. Sorta. Ruby's been rocking the feed-herself-with-a-loaded-fork for months now, but I've been experimenting with spoons lately too. While it is a messy endeavor, it's starting to pay off. AND she has her bowl-to-mouth accuracy down because of all of the fork practice.
  • Signs. Oh, how many she has. In the last few weeks Ruby has picked up several and uses them often. She still does "all done", but it's more intentional and recognizable now. She will sign "fish" when we are reading a book with a fish photo in it, but only when prompted. She will sign "please" all day long and very emphatically. Usually it's a flipping over hand across her chest, but if she can reach her belly (as in, when she's not in her high chair), she will rub her belly like crazy. And "eat". She will bring her hand to her mouth to tell you she wants to eat. Again, and again.
  • Imitation. Ruby is showing us that she can be a very quick learner in every portion of her day. While we always put lotion on her after her bath, I just realized a few weeks ago that I never show her how she can do it herself. It only took one time and now she rubs her arms and chest as soon as she sees the lotion and/or bath soap. Love that little sponge!!

Saturday, November 01, 2014

Halloween

Awesomeness.
Nope, not the actual day, but the picture.

Finally. FINALLY. This was the third year I tried to convince my crew to do some type of group dress up. In the last 36 months we've discussed everything from Little Mermaid to Cowboys to Toy Story to ET...

As I have in the past, I started talking to them early, to try and get the idea cemented before summer was even over. This year we gravitated towards Despicable Me and it stuck. Around Labor Day I told them we were not changing our minds because I was going to start looking for costumes. (No complaints from them!)
We had a few homemade minions for the Little 5 Points parade, but they didn't make it to our Halloween celebration for some reason. (Glad I spent so long working on them!!) We did NOT win the family costume contest in our neighborhood, but I'm told we were a very close second. (The winners were lego people; they were awesome and very creative, so no hard feelings.)

The kids trick-or-treated until it started pouring on us. Lehr then ran home with Ruby (yes, in his Gru costume) and got the car. He picked up about 8 people (including Eli, but not Maddux - she wanted to walk in the rain with me), but the rain was brief. The kids continued trick-or-treating while I put Ruby to bed.
The bad news: even though the kids liked our dress up, they want to do their 'own thing' next year. Sigh.

Sunday, October 26, 2014

All of the Little Things

They add up.
In just the last week I've noticed so many 'little' things with Ruby. They are likely milestones or progress towards milestones that I didn't notice with the other kids, but when you work so hard on skills, and when you scrutinize every movement or sound your child makes, you notice a lot.

Ruby talks a lot. Most of her talking is babbling, but she has many consonants: m, d, b, l, and then vowel sounds (mostly 'uh', but sometimes 'oh'). She says "more" dozens of times every meal. It ranges from "mmmm" to "moh-rh", and I love it. Ruby says, "ah duh" when we are done with meals. We've worked forever on showing her the sign for "all done" and shaking her hands at the end of each meal. She sometimes will shake her hands randomly, but now she says "ah duh" and looks right at you. She signs "fish". Not a sign that most could recognize (it's basically one hand shaking), but I'm certain that the sign we do every day with her books is catching on with her.

She squats down lower than ever when she's picking something off of the floor. She used to plop down to sitting if she had to squat at all, but now she's able to stay on her feet much lower. And she LOVES to crawl up the stairs. Every time we go up the stairs I put her down and she scales them. So well! She knows it's a big deal too because when she gets to the top, she sits down, looks at me and smiles and giggles.
Ruby knows routines. This is good news, since I'm a routine person :) After every meal (once she says "ah duh"), I take her out of her chair and put her on her feet facing the chair. Then I help her push it back into the corner. She LOVES this and giggles the whole way. When we go upstairs after dinner, she crawls right into the bathroom and pulls herself up on the bath edge. She knows it's bath time. And when I read to her before her nap or bedtime, she knows that when I put the books away, it's time to sing a song and go to bed. She turns herself onto my shoulder, smiles and snuggles and starts to suck her thumb.

The tongue. It's one of my biggest sources of frustration for Ruby. I want her to not have her tongue wagging for the many health reasons, but even more so because I don't want people to underestimate and judge her because of it. The last 16 months have found me working to get that tongue to stay in her mouth around the clock, to the point where some days I feel like it's all I do. While we are still not 'there', Ruby's tongue is in her mouth way more than it ever has been. Not only does she pull it in pretty consistently when I tell her to, or when I tap her chin, but way less pictures that I take show the tongue out. 
I LOVE Ruby kisses! She used to give very wet kisses, as many babies do, but in the last month, she has become quite adept at making an 'mmm' sound and kissing with closed lips. She will definitely do it on command too. My favorite thing is when she looks at you, leans in slightly and says "MMMM"; she likes kisses too.

Ruby follows commands very well. She's not great at obeying 'no', but she's at least as good as my other two were at this age. And when we are doing books or flash cards, she will hand objects back to me when I ask her. We've been trying to teach Ruby to not throw her cup when she's done eating, so we've shown her where to put it on her tray; she now will do that 90% of the time. And after eating with a fork (which she does well), she will now hand it to us rather than dropping it on the floor.

Ruby is pointing! Kind of :) Another big thing we've been working on forever is Ruby using her pointer finger to point while also pulling her other fingers under her palm. We are not quite there on the finger-tucking (she's done it twice, unprompted), she is very much using her pointer finger in a more dominant way, and all on her own. She 'points' with it all of the time now.
Waving is something Ruby has done for months, but it's taken off a lot more in the last few weeks. She knows what signals a wave too. When the bus pulls up to the stop in the afternoon, Ruby waves furiously at the yellow vehicle because she knows she will see Maddux and Eli seconds later. And when she hears the garage door open, she looks at me, says "duh" and waves: Daddy's home.

Thursday, October 23, 2014

Buddy Walk

When we first got Ruby's diagnosis, a friend told us about the Buddy Walk. At that time we were still trying to process everything, and given how careful we chose to be about exposing Ruby to the general public in her first six months, we opted to skip it. But since early summer, we've been planning for Ruby's first walk this fall.
A friend designed a logo for us with Lehr's "Ruby is a Gem" motto, and we made it possible for friends and family to buy shirts. Then we established our online team so that anyone who wanted to join us could sign up for the Atlanta walk. All proceeds were to help fund several local resources, including two Ruby uses often: the Emory Clinic and Gigi's Playhouse.

Leading up to the walk, I was amazed at how many orders for Ruby shirts came in. I had voiced our desire for people to buy a shirt to wear around town in an effort to strike up conversations about Ruby and Down syndrome in general, but the amount of people who did just that blew me away. Even weeks after the walk, I still see her red shirt pop up on Facebook or at church. And I asked friends to post pictures of themselves wearing the shirts; everyday we got a few new photos from all over the United States! As of the week of the walk, 112 Ruby shirts are out there, spreading awareness....crazy!!
Since I set the team page up online I was able to see how many walkers signed up. This was another awesome surprise. Our team kept getting bigger and bigger; over 80 people signed up to walk! AND the amount of money donated in Ruby's name grew so much that it never left the leader's board. Team Ruby started at second place and eventually moved down to fourth (for most donations in Atlanta). We ended up raising over $4K which was more than 200% of our goal!

When the day of the walk finally came, we were pleasantly surprised (SHOCKED!) that all but two people who signed up were able to come to the walk, and several others showed up and registered on that day, bringing our total number of walkers to 96! Ruby grabbed a looong nap on the way to the walk (smart girl), so she was able to stay awake for the whole afternoon. We set up a small tent near the back of the park and greeted the many many Team Ruby members that came. Everyone had a blast eating and playing games, throwing the football and catching up... It was a perfect day. The walk itself started just before 4PM. We all lined up outside of the park and walked the perimeter.
I cannot quite express how blessed and loved Lehr and I realized our family was on that day. The amount of support for Ruby is something I can't wrap my brain around; it reaches so far and is so all-encompassing. Donations pouring in, people wearing my daughter's name across their chest, almost 100 people choosing to spend their Sunday with us, our pastor mentioning the walk in his sermon, countless friends surrounding Ruby on that day, just trying to get a hug, a hold, or even a smile.....these are just a few of the many ways our family has been so blessed.

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.

Wednesday, October 15, 2014

Therapy Update

Here's Ruby's latest and greatest!

In the area of speech, Ruby has improved her technique for chewing things. This is not something I would even come close to noticing without the speech therapist/oral motor specialist's help, but I'm able to notice small things like that now, as many of us that go through therapy with our kids do. This likely means she's strengthening all of the right parts of her mouth (which is necessary for speaking!). Ruby is also trying to imitate my mouth movements for sounds. When I make sounds and ask her to do the same, she is now studying my lips and mouth even more and moving her lips around. The other day she even got her tongue involved when I demonstrated "L" for her. Finally,  lollipops have made their way into our therapy. I am sure they'll be back later too. For now, every few days I take a Dum-Dum and move it around on the inside of her cheeks to try and elicit her tongue's searching out the cheeks for flavor. I also hold it out in front of her mouth and try to get her to stick her tongue out to lick it.
In Physical Therapy, Ruby is still walking with her new braces and gait trainer. The new tennis shoes I got her to seem to be slowing her down. They are a bit 'tall' and it's hard for her to lift her foot high enough to not drag it. Because of that I use the older 'short' shoes often enough to keep her interested in walking. She is also standing to play a lot more; she will let go of the fridge or couch to play with two hands sometimes too.

We do not have an Occupational Therapist, but we see one at Gigi's sometimes. I have been working for a long time with Ruby on her pincer and putting objects into containers. In the last month Ruby has started to put spiky balls or other small objects into an oatmeal container or bowl for me.
I invested in a few OT type containers and we've used them a lot. One is cylinders into round holes, one is foam 3-D shapes into shaped holes, and one is buttons into a slot.
Ruby can do all of them, to varying degrees! She just figured out the coin slot, which means buttons are fair game too. This should help her pincer, as I'm training her thumb to grab from the opposite side as her other fingers when holding small flat objects.
My favorite (and Ruby's) is the ball bottle.  I took a Gatorade bottle and put a dozen or so bouncy balls in there. Shaking them out is a little difficult sometimes, but the opening is just big enough to put the balls in, so it requires a deal of precision and dexterity. Ruby is a pro at it and she loves it!

Tuesday, October 14, 2014

Parkour!

Eli and Maddux have dabbled in gymnastics for the last few years, but outside of a few months here and there, it's never developed past that. As American Ninja Warrior fever struck us just after Ruby was born, the kids started to express interest in rock climbing and parkour-type stuff. As things often go in our house, it took me about six months to find a place that offers classes like that, and another six to sign them up.

The older kids took their first class this last Monday. Ruby and I had to wait in the front area, but there is a TV in there that plays the live feed from the inside gym where the class was being held. They had SO much fun! I wish I could have taken it; it looked like a blast! The kids and their solo classmate warmed up, practiced a few basic 'moves' and then went on to some quickly made obstacles around the gym. Go-go-go was the theme, for sure (reminded me of my boot camp!). They came out exhausted and grinning from ear to ear.

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.

Friday, September 26, 2014

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!