Sunday, December 28, 2014

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'.

Thursday, December 25, 2014

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.

Tuesday, December 23, 2014

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."

Saturday, December 20, 2014

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.....

Thursday, December 11, 2014

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.

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.