Mad Dog

I really wish I'd remember to write down the stuff that comes out of that girl's mouth because it is always Awe. Some.

For now, this is all I can remember from the last few weeks:

• The other night I was rushing her a little to get out of the shower and get her PJ's on so that we could finish up Little House in the Prairie before it was due at the library. She and I had been planning (and looking forward) to reading two or three whole chapters before bed. But she was dawdling while drying her hair and she asked me several times if we could only read one and save the others for tomorrow after school. We had a few minutes of back and forth until I finally asked why she didn't want to read that night. In a very serious tone she said, "Because I want to join the party downstairs." (Lehr had some music on while he and Ruby hung out before her bath.)
• After Maddux attended a ballet performance of Snow White with her class, we were discussing the details. At one point she told me that there were some 5, 6, and 7 year olds dancing too. I asked which part(s) they were playing and she told me, "lions". My memory of Snow White doesn't include lions, so I asked her if there were really lions in Snow White. She looked at me, batted her eyelashes and said, "Think outside of the box!"

Therapy Update

I don't even know where to begin. This girl and her progress...amazing!

Physical Therapy:
I would call Ruby an official walker now. She takes more than 10 steps at a time and chooses to walk way more than crawl as a means for transportation. Last week Ruby was still walking, but it was no more than 6-8 steps and she still 'crashed' a lot. Not a full on walk till she ran out of steam, but there was no regrouping if/when she lost her balance.

This week has found her taking slightly smaller steps and often slowing to a stop to regain her composure before continuing to her destination. Sometimes she still only gets 4-6 steps, but other times she makes it across the room. We've been working with holding objects while she walks, to improve her core strength and overall stability. Black bean cans, tennis balls, small buckets and weighted 'soft' balls are all in her tool belt.

Occupational Therapy:
While we don't have any official sessions of this, Ruby's therapist is incorporating it more and more, and I've been working on some things with her as well. The last two weeks we've been working on stacking objects (boxes and cans), putting objects on top of the couch, and clothes pins. That last one has been the most fun for Ruby: she loves to pull the clothes pins off of her shoes or shirt.

I've been working mostly on feeding skills, trying to get her to self-load the fork. One of those control strategies is using toothpicks to eat from. I load up a few with cheese or apple or meat and she picks them up and eats from the end. Obviously she has to bring it to her mouth correctly (which she already does very well with a fork), but she also has to use her fingers intentionally to pick up the end of the toothpick. I let her color a few times each week too, to work on that grip strength.

Speech Therapy:
Ruby has a new speech therapist. While our first one (through Babies Can't Wait) focused mostly on oral motor strengthening for eating and speech prep, this new one is more speech/sounds oriented. So far, so good. She is amazing at getting Ruby to S.L.O.W. down and listen. I try to replicate on my own, but I am not as proficient. Ruby has added more signs: music, bird (just like duck), night-night. And she does some hand motions with our songs that we sing: Itsy Bitsy Spider, Pat-a-Cake, and Row Your Boat. She is also getting better about giving me the 'B' sound. She now nods 'yes' (she brings her head back but doesn't get the nod part as well yet), and when I ask her what the cow says (or if she sees one in a book), she says "bmbmbooooo". As happy as I am about that one (her first animal sound), I'm confused because "mmm" has been her best (and often only) consonant for so long. You'd think she'd make the 'moo' sound more pronounced.

Growth

At Eli's annual check-up, his pediatrician noted that he had not grown a sufficient amount in the previous year. It was not cause for any concern, just a follow-up visit in six months. That appointment took place a few weeks ago. Once again, Eli was not showing the rate of growth he's shown in his life so far. As a result, his doc took some blood and ordered an x-ray of his wrist (growth plate).

The whole ordeal was simple enough; one of the great benefits of living in Atlanta is our Children's Hospital. I didn't even have to make an appointment for Eli's x-ray. We just showed up at 5:30 on a Friday night and less than an hour later, we were done. The radiologist and staff was awesome. They let me stay in the room with him and even showed us his hand/wrist x-ray on the computer right away.

A few weeks later we got a call from the pediatrician's office letting us know that everything came back very normal. We will follow up with her in a few months, but for now it appears that Eli is following in his parents' footsteps. Short like Mommy with a 'late bloomer' growth tendency like Daddy.

How Far She Reaches

Yet another post I've started and stopped about a dozen times. The subject of Ruby and how she affects those around her is a concept that is played out before us weekly, sometimes daily. And it's in so many different ways that every time I think I have a handle on it, something else happens that makes me realize that my perspective was stopping me from seeing other angles that were equally, if not more, amazing.

Since her birth - since the night she was born - Ruby has been changing those around her. It started with us, Lehr and I. She showed us right away that while she carried an extra chromosome, she was still 'just' a baby. Two families we love very much got a first glimpse at her and us in those first 48 hours, and started walking this walk along side us. When we finally let everyone know the diagnosis during the month that followed, that allowed her to change others around us, one at a time: my mom, one of our pastors, more friends, more family.

Most of our friends and family had no prior connection to anyone like Ruby, so she became their ambassador through this diagnosis. And she did it in the most gentle way. Just as we didn't know about Ruby's diagnosis when we first saw her, almost every person we introduced Ruby to didn't know until we told them. Ruby was sure to put everyone she met under her spell, captivating them, not letting on that she had an extra chromosome until at least 20-30 minutes after they'd been able to hold her and connect with her.

A few weeks after she was born, we made the news more public by sharing her full birth story on the blog. And before I knew it, people from everywhere, friends of friends of friends were 'friending' me on Facebook, all for the purpose of following my photos and one-liners about Ruby. It became so much that I ended up creating a separate "Team Ruby" page just for her adoring fans. I still get messages and comments on her page daily from people I've never met, remarking how much they love learning about Ruby.

When we started planning for the Atlanta Buddy Walk, I hoped we would have a group of friends join us. And I prayed that we would raise a respectable amount of money for the local agencies and organizations. We were blown away - BLOWN AWAY - by the amount of money pouring in. Every week more and more donations were made in Ruby's name. Until the night before the walk, Ruby supporters raised the 5th most funds in all of Atlanta. And Team Ruby walkers? We topped out at 100. Unbelievable. On the morning of the walk, red Team Ruby shirts were seen all around our church, and our pastor even mentioned Team Ruby and the Buddy Walk in his sermon.

As we zoom in, Ruby has worked her way very deeply into the hearts and lives of several people. Some of these friends are experiencing Ruby's diagnosis for the first time through her and some are furthering their heart for the Down syndrome community. Sometimes this comes in the form of acquaintances and friends (both female and male!) trying to sneak in snuggles at church. Sometimes it's friends of mine, vying for a chance to Ruby-sit for an hour or so. Sometimes it manifests itself as kids at church lying on the floor and playing with her. And sometimes it's the way I cannot walk through Publix, or sit down in a restaurant, or go to the post office without someone following us and starting up a conversation with her because they can't break eye contact with her.

One of Ruby's strongest connections with someone she only sees weekly, at best, is with Russell. A boy who Lehr and I have had the pleasure of seeing grow up over the past 8-ish years. He has always been a rock star older kid (he's just a little older than Eli) to our family, but what we've seen when he's with Ruby has brought us more comfort than anything. Russell's mom recently shared with us that he has been drawn to kids with T21 through most of his life. And much like his connection with Ruby, his interactions with these other children have been magnetic. She wrote what I'm trying to say WAY better than I ever could:

Russell asks almost daily if there is any "news" about Ruby on her Facebook page. Funny pictures, cute videos. "Anything today, Mom?" I love that they have this forehead thing happening right now on the floor after church.  Magnets. Russell loves Ruby. I do believe that God goes before us, prepares people to have influence in our lives and allows us to be specifically loved by those who might not be obvious choices. I believe that God has prepared Russell to specifically love Ruby and kiddos just like her. What a delight she is to our lives. To his life, especially as he gets to love in a specific way that God crafted him. It's not an accident that we are friends. Not an accident that God made my boy the way He did and your girl the way He did and they dig each other. Ruby has a huge fan club.  HUGE. But I truly believe she will have a life long friend and advocate in Russell. Thanks for letting him love on her, manhandle her, carry her around when unnecessary, get all up in her face.... I think God made him that way.

Ski Trip

Day 2...can't believe the kids woke up! Skiing almost 12 hours yesterday should have found them sleeping until noon, but they were awake by 8, ready for more. Lehr took Eli and Maddux up and down the mountain all morning again. We had to drive home today, but that didn't stop them from skiing from 9 until 1. Maddux stopped around noon, the fatigue from Saturday kicking in, but the boys went until the last minute. Can't put into words how proud I am of those kids...they both had a great weekend because they just focused on the fun and the excitement of a new experience.

Ski Bunnies

For Christmas, Lehr and I gave the older kids a weekend ski trip. We chose a nearby 'resort': Cataloochee, in North Carolina. The kids were SO excited.

We scored some amazing ski gear on Craigslist and were able to outfit both of them with anything they could want or need (including helmets!). The gear was from a family with two girls, so the stuff had a slight feminine feel, but nothing over the top. The jacket Eli ended up in had some bright colors in it; he looked like a snowboarder. And his helmet was the lightest of pink (almost white), but he didn't mind. He actually said, "I don't care; I just want to ski."

We drove up after work on Thursday and planned to ski Friday and Saturday. Unfortunately, it poured all day Friday, which would not have made for a successful first day. We ended up just hanging around the cabin all day, watching movies, playing games, and dipping in the hot tub a few times.

Saturday was the opposite: a tiny bit of snow to start the day, but then bright blue skies and 36degrees with NO wind. We put the kids in a half day of ski school, just to get them acclimated. Even though we both got lift tickets for the morning, we ended up just watching them do their ski school thing all morning.

I was impressed with how well they both did!

When Maddux and Eli finished with 'school' at lunchtime, they asked to go down their school bunny slope a few more times (on their own) to make sure before going up top. That's all it took and then Lehr took them up (one at a time the first time) the chair lift to the top. I couldn't believe how quickly they came down...only a few falls each! Ruby was done at that point, so I took her back to the cabin for lunch and a nap while Lehr stayed and skied with the kids. They had a blast and even managed to get on and off of the chair lift without any injuries.

At 5PM, Ruby and I picked the three up from the mountain and brought them home for a quick dinner. They were back on the slopes between 6:30 and 7 and stayed until 9:30. That's a looong time! Maddux and Eli seriously had a blast. Lehr said they were both totally into it and enjoyed every fall, every bobble, everything.

(Don't) Give That Girl A Hand

Because she doesn't need it!

Ruby had PT on Tuesday morning this week. Our therapist always gives us a handful of 'exercises' to work on for the next week, and we usually rotate through them in the course of our day. This week, however, I kinda stuck on one in particular: helping Ruby to stand without assistance or pulling up. (Or rather, helping Ruby to realize she doesn't NEED assistance to stand.)

Fast forward to Thursday after dinner (just over 48 hours after we started working on it!), Lehr and I were standing in the kitchen having a conversation. Ruby is crawling around and playing at our feet. Suddenly I see her out of the corner of my eye, in the middle of the floor, stand up from the ground and take 3 or 4 steps towards me! She was all smiles and giggle, very proud of herself.

I got her to repeat the stand a few more times before bed, and then our Friday was spent repeating again and again. I got all cheesy and used the prompt, "How big is Ruby??!?" to get her to stand and walk towards me. (Hey, it works!) Now she does it non-stop, which means she is taking more steps than ever.

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.