Therapy Update

Ruby had to miss Gigi's for several weeks before the holidays due to doctor appointments and sickness, and speech was on a little hold because of teething and a change in therapists with Babies Cant' Wait. Fortunately she's been able to maintain her Physical Therapy. She's still taking 4-5 steps at a time, but never without my prompting. The area she's improved in big time is standing. She still needs to pull up or push up on something to get to a standing position, but once there, she almost immediately let's go and stands unsupported while she's playing.

And even though she hasn't had any speech therapies in the last month, Ruby's signing is exploding. Her intentionality with the motions is huge and she has many words. As of this week she signs: more, please, eat/food, pig, help, hot, fish, all done, dog, book, wash, milk. It's been really cool to see her start to use them more on her own. She is still all kinds of vocal, babbling all of the time and using several consonants, but no words other than 'moh' or 'mama'.

Christmas 2014

Although we have never formally made a list of things we like to do leading up to Christmas, I think the kids would agree that there are certain things that belong on a bucket list of sorts when it comes to experiencing all we like to experience in December. Just a few of our traditions are light-looking (several trips, at least one involving hot cocoa), making cookies and chocolate covered pretzels, adopting a Children's Wish family to buy for, watching holiday shows/movies, hanging lights outside, making gingerbread houses, preparing Operation Christmas Child shoe boxes, decorating the house, reading the many Christmas books we have, homemade spaghetti and meatballs for Christmas dinner.... I guess that's more than just a few.

This year we increased the library of holiday movies to include Home Alone, Elf and The Christmas Story. Good stuff. The kids especially liked Elf. (The list now includes Prep and Landing, Charlie Brown's Christmas, Prancer, Polar Express, The Grinch and the three new ones.)

Maddux and Eli decorated small Christmas trees in their rooms, including lights. Next year Eli tells me he wants to 'really blow it out' with the outdoor lights. Interesting since I'm the only one ever setting them up. I told him he'd have to be more involved if he wants me to add to the many strands I already put up.

Grandma Cathie has given the kids matching holiday PJ's for as long as we can remember, and this year was no exception. All three crazies wore candy-cane-striped flannels the entire week of Christmas. And she made them their annual prize ball too. As 'simple' (and inexpensive!) as that gift is, they always comment that it's their favorite.
Each year we have the kids open their gifts to each other on Christmas Eve, mostly as a way for those gifts to be set apart from the rest and for them to be able to really focus on the thought behind them. This year, both older kids chose to give each other experiential gifts (with no prompting!). Maddux got Eli a fun football game and a dinner date to Doc Cheys. Eli made Maddux a small blanket (weaved) and a dinner date to Chipotle. They both loved their gifts. Maddux was SO excited for Eli to open hers; she sat next to him on the couch and watched his expression when he opened it, smiling at the slightest indication that he liked his gift (which he did). That girl loves her brother! Ruby got the kids walkie talkies which they were crazy excited about. They kept them in their rooms, chatting for a while after we put them to bed. Eli and Maddux got Ruby a small bean bag chair (which she loved).

After a fish dinner early afternoon, we went to Christmas Eve service. Maddux got to sing on stage for the last song (Silent Night) with the kids' choir. This was her first time on the stage at church, which she was nervous about. That struck me as so odd, considering her personality. As expected, she did great. Christmas Eve also held another first for Maddux: her first communion. (We talked to her about it ahead of time and made sure she understood the importance of it.) Eli was a bit out of sorts all week, but especially on Christmas Eve. He had a horrible mouth sore that made his speech almost unintelligible, and every movement (including eating) hurt.

Christmas morning started with Ruby putting Baby Jesus in the manger (Eli and Maddux were adamant that she be the one to do it). Stockings, breakfast, gifts, food, games and more eating followed. Ruby had a great time unwrapping her gifts. When Maddux let her, anyway. That girl was so excited for Ruby to see her gifts that she 'helped' her with everything, no matter how many times we tried to explain that, for Ruby, the fun was in the opening, not the seeing of the actual gift. We ended the day with a slice of Jesus birthday cake. The kids opted for chocolate this year instead of the festive red and green velvet we did last year.

And I know our days of full-Santa-trust are numbered...the kids peppered us with questions several weeks ago. But I know they still want to believe. Santa left a great note again this year, and as far as we know, there is at least a shred of belief in their hearts.

Jumbled Lyrics

Once again, Maddux rocks my socks off.

Several months ago, she sang along to Cake's "Going the Distance" by serenading us with "She's all alone. All alone in a pile of leaves!"

This time she's back with jumbled lyrics to one of my favorites: Outkast's Hey Ya. Yesterday she told me to "Shake it. Shake it. Shake it like a polar bear picture."

Maddux's Big Ole Heart

That girl. She's always had a big heart. Always been a bit of a 'little mommy'. Always taken care of and looked out for those around her.

As soon as she could write, Maddux has been making cards (randomly) for teachers. In the last year or so, that has expanded to friends. Now we've moved on to neighbors. She will not just make one for the neighbor kid friends she has, but for their whole family. Most of the time I'm totally unaware; the receiving neighbor will text me and thank me for Maddux's nice card left in their mailbox or on their front porch. Almost 100% of the time, that text will catch me by surprise.

Maddux's awesome heart also includes her family. She will leave Lehr or I (or Lehr AND I) notes and pictures all of the time. Their sentiment ranges from "You are the best mom/dad/parents!" to "I can't wait until fall when we can jump in the leaves together!" to "Mommy and Maddux are GIRLS!" They can be random or very focused, but they are always awesome.
Maddux's heart centers on Eli often. Recently on a night when we are coming down on Eli a little harder due to his inability to not talk back, I found her in her room making him a card, telling him that he is the best brother ever. (This, coming from the sister who does everything in her power to make his life better, to the brother that does not exactly return that favor.)

That girl is a keeper.....

Rainbows and Lollipops

Ruby has Down syndrome.
That sentence is a heavy one.

For most of us (us 'special needs parents'), when we first get our diagnosis, it shakes us. Most likely because of what we think that diagnosis means. Or what the well-meaning doctor who delivered it may have told us it means. Or maybe it's because of what Dr. Google tells us it means.

And you know something, in some ways, they're all right.

The scary delays, the verbal and physical hurdles, the medical ramifications they speak of will affect all of us. We will have good days and bad days. Some of those bad days will be very bad days. (Those are usually due to our own expectations or self-imposed ideals about what our child's life should and shouldn't look like.)

Before you stop reading and write me off altogether, hear me out. I'm not saying that we should put all of our eggs in the basket with stereotypes. But I'm not going to sugarcoat things either. Down syndrome is not all rainbows and lollipops.

Ruby's road is hard, and it will get harder. We are in the easy stage right now. Her delays are only starting to be apparent. The gap between her and her peers will only grow with each month and year that passes. And even as she works every week with several therapists and countless home sessions, that gap will never not exist.

And I worry. I worry about Ruby all of the time. Every cough, every sniffle. Is this the time when she'll get sick, I mean, REALLY sick? Is this the cold that will turn into a full blown infection in her sinuses or chest and result in hospitalization? She is sick with small stuff way more than my other kids were, which makes me feel like an awesome parent....

And then there's the fun worry about if we're doing enough. Enough speech therapy, enough physical therapy, enough occupational therapy, enough music therapy, enough playgroups, enough homework. Is she working hard enough? Am I working hard enough? I'm ashamed to admit how many dollars have been spent in the last 18 months after 9PM when I'm alone with my worry about not doing enough. I search out the toy or therapy tool that I'm convinced I should have owned already and two days later it arrives on our door. I think most of that says a lot about me: maybe I'm not ok with accepting all of DS. Maybe I'm still trying to 'fix' her diagnosis. (Hello, bitter pill.)

Bottom line: all of the doctors' appointments and therapists and not-fun 'stuff' that comes along with a child with Down syndrome is hard. Really hard.

But what is NOT hard is everything else.

She makes loving her, snuggling her, caring for her so stinkin' easy. Seriously. 

How many minutes I spend each hour just marveling in her perseverance. How often have I stopped my task to watch her thumbing through yet another book and 'reading' out loud. The girl is curious as the day is long, busy as any other baby I know, and as outgoing and social as Maddux.

And she's EASY. Who knows if it's because she is the third child, or because I'm a parent for the third time and I've relaxed my style, or if it's just because she's Ruby. But when I think about the struggles I went through with my other kids at this age, I'm amazed at how easy a toddler Ruby is so far. (And out of the three of them at this moment in time, she's the easiest also!)

They say parenting is the hardest, most rewarding job ever. (Man, 'they' have a lot to say!) Same goes for parenting a child with Down syndrome. It can be crazy hard, but when she reaches a milestone, it is amazing. And when she's working towards that milestone, it is crazy amazing.

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.

Melts In Your Mouth

In true Daddy fashion, when I was out of the house the other night, Lehr secured his title of "Fun Daddy".

He pulled out the chocolate chips and let Ruby get her hands on some sweet goodness.

Seems like she took to it pretty well.

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!!

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.

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.

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.

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.

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!

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.

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.

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!