Wednesday, January 22, 2014

Nom Nom

Ruby is an eating machine. She started a little slow, but her speed of consumption is up there with McQueen these days. She eats three meals most days (along with nursing) and has yet to 'reject' a food. So far she's tried sweet potatoes, avocados, winter squash, zucchini, pears, peas, carrots, oatmeal, pinto beans, pumpkin, mango, peaches and pears. Add to that, she's sipping water or breast milk through a straw during at least one of those meals. Rockstar.

The video clip quickly shows the 'exercises' Lehr and I do with her before she eats. Sometimes we use a small spongy type tool to do the inner-mouth work, but mostly I use my fingers these days. These exercises are designed to help the muscles that Ruby uses for eating 'wake up' before she eats. Given her success, I'd say they're working!

The second clip shows Maddux helping Lehr feed Ruby. You'll notice her doing some sign language. We used some ASL with the other kids and have already started with Ruby, mostly during meal times. Maddux is always such a good helper and she loves to use the signs also. However, what you'll see on the video is a combo of real signs, signs that are 'close' and then Maddux just making some stuff up because it makes sense to her. She also goes through about 25 tissues when left to her own devices...good times.

Tuesday, January 21, 2014


60 degrees. Sun. Midway through January. On a day off from school and work. Awesome.

That pretty much sums it up. I would have to say that our day was perfection. I went to camp (I didn't have the day off) and came home to a lazy morning crew. We made pumpkin pancakes and eggs and rolled through some mandatory laundry folding. Then I went for a training run with the kids (the kids are going to run a 5K with me this spring), followed by Lehr making us smoothies for lunch. I suggested we enjoy them on the front porch because of the sun.

We never came back inside.

We played. And played. And played. At one point, we invited a handful of boys over to play football, and some neighborhood girls came down to play also; we had five boys and four girls and Ruby.


That is honestly the only word I can use to describe Ruby's progress in many many areas over the last week.

When I guide Ruby into a sitting position, no longer do I need to hold her trunk to make sure she doesn't fall. No longer do I need to put something behind her so she doesn't topple backwards. No longer do I even need to place a few fingers on her hips/thighs to make sure she stays 'anchored' down. Nope. My girl is sitting for over a minute without toppling. Much longer than that at times, in fact. AND (and this is a big "AND") she is playing in that position. She's so balanced that she can lift her arms up from her knees or legs and use them. (That's big time.)

When I guide Ruby into an all-fours position, she will weight bear on her hands/arms for many many seconds, but not quite a minute yet. She will tolerate staying on her knees for a loooong time, but I do need to give her arms a break now and then. She will play in this position, which means she has to balance on one of the arms so she can use the other. And her newest trick is using her core to pull her knees in when I prompt her at the hips, which means she is doing most of the work getting into the position. She also pushes up into 'up dog' and holds it there for a looong time.
Ruby likes to say 'mmmm', but she is also giving some 'gggg' (usually when she's eating a toy), blowing lots of raspberries, and occasionally throwing a 'lllla' in there. Also, she gives a cute little cough/laugh very intentionally to Lehr or I and waits for a response from us. Total communication.

This girl can put her hands up like the ceiling can't hold her.... She is reaching for things over her head when standing (in the exersaucer) or sitting, or when I'm holding her in a standing position. And she's discovered her hands so she studies them so so intently. All of the time. And she eats her toes and that's just cute.

It's been a crazy busy week or so for Ruby; she's impressed the therapist thoroughly two weeks in a row and even her friends at group therapy have noticed her big changes. This girl is on a roll!

Monday, January 20, 2014

Baby Ruby

Most contacts I made online after Ruby was born told me that I would cherish each and every milestone Ruby reaches, even more than I would expect. They were right, as watching that little girl works so hard so much already at PT has been at least as exciting for me as watching Eli grow through baseball or Maddux learn to ride a bike. There is something about intentionally watching your child's every move that makes you so aware of the amount of work and learning they are doing every second of every day. No wonder they take a few naps each day!

It has become so obvious to me even just six months how incredibly blessed our family is, and what a blessing it is to be a part of this amazing new community that we've barely scratched the surface of. How awesome it has been to see through group therapy, and online through news stories and Facebook so many cool, cool things coming out of the Down syndrome family. What a gift it has been to have our eyes open to the world in a very different way.

I feel our family is so incredibly lucky to have Ruby and to be a part of her world, and I am so thankful that we are blessed in this way. It's almost to the point where I wish more of our friends and family were able to experience this in their houses as well. That is not to say that I wish a diagnosis that brings health problems or sorrow or sadness for anyone, but most parents of children with down syndrome would agree that this diagnosis is a bigger blessing than they could've ever imagined.
Outside of the milestones that we're constantly celebrating with Ruby, the best thing that I've experienced in the last seven months is Ruby's slower growth. My girl was born little. L.I.T.T.L.E. She wasn't even 10 pounds until she was over two months old! And while she is amazing with how much she is able to do, there has been some physical delays here and there, even if only for a few weeks or a month. Those two combined have allowed me to cherish Ruby's baby stage longer than usual. I feel like I blinked and Maddux was crawling, probably because I was dealing with two babies at the time. So this extended baby phase has been a welcomed gift.

Saturday, January 18, 2014


When we first started therapy for Ruby, I felt overwhelmed by the thought of picking out the *right* type of toys to help her advance in her gross and fine motor skills. We got rid of 99% of Eli and Maddux's baby toys, so we were starting from scratch anyway, might as well make sure we made our purchases count. I read blogs and reviews for hours on end about the pros and cons of most any toy you can think of for a 0-12month old. I'm sure I learned what most other parents of ANY child learns: to each their own. What works for some may not work for others, and Ruby is going to like and learn from what Ruby likes and learns from.

That being said, we've definitely found some tools that proved to be more beneficial for Ruby. I'll list them below and briefly give a reason. Hopefully this will help other new parents looking for a place to start.

LeapFrog Spin and Sing Alphabet
Ruby. Loves. This. I definitely credit this toy to Ruby's progress with reaching while in a prone position, and sitting in a kneeling or side-sitting position for longer than she would have without it. This toy is not too loud, has 3 settings of songs (though they all run together when your child plays with this toy on end, like Ruby does), and it's the perfect height to access while lying down or while sitting. PLUS, it's hard to knock over, so when Ruby was younger she could swipe at it with all of her might and it would stay upright for her.

Fisher Price 1-2-3 Crawl Along Snail
This is another of Ruby's all-time favorites. This snail moves as it 'sings', and she becomes mesmerized by it. The one thing that isn't great is it moves so much that it often ends up on the other side of the room when Ruby pushes it. This will come in handy once she starts crawling, but for now, Mommy ends up chasing it.

Therapy Chewy Tubes
We picked these up as soon as I noticed Ruby starting to gnaw on my fingers during her oral exercises. These tubes allow her to chomp down as hard as she'd like while she practices her chewing skills, and the different sizes and textures give her sensory therapy.

Vtech Move & Crawl Ball
This is becoming another favorite of Ruby's. This ball rolls around (on it's own) and signs and talks, but with a tolerable volume. (That is VERY important to Mommy's ears!) The ball continues to move as long as it is touched or pushed, but stops when it isn't played with. It moves in a circular pattern, so it ends up rolling away from Ruby and then back to her. She's gotten bonked on the head by it a few times, but it moves so gently that she's never minded. :)

I started using the Z-vibe with Ruby when she was about 3-months old. Before she would nurse, I would pop that gentle vibrating thing on her lips, then inside of her cheeks, and on her tongue for maybe two minutes total. This helps 'wake up' her oral muscles to more efficiently nurse.

Summer Infant Seat
Our Physical Therapist brought us this seat when Ruby was just a few months old. While we had a bumbo, it didn't seem to offer the right support for her when she was younger. This seat was shaped just different enough so that we could stuff a few burp cloths and wash clothes in there to make it work. Plus the spinnable 'tray' has fun things on there. I still use this with Ruby when I'm getting dinner prepped; now that she's big enough to not need any fillers, she works on her sitting while in there.

Honey Bear Straw Cup
We started Ruby with this as soon as we started offering her solids at five months. Most kids with low muscle tone are advised to use straws rather than traditional sippy cups, to help strengthen the muscles and gets them to focus their efforts in the right areas. When we first started, we put the straw on her tongue and squeezed the bear a little to let Ruby know that liquid would come through the straw. Then she figured it out and we were able to stop 'helping' her very soon after. For about a month, 90% of the liquid would fall back out of her mouth because once she stopped sucking, she would totally relax her lips and they would open. Now she's more of a pro and we only lose a few drops here and there.

Sweat Bands
This is our own invention. Our physical therapist started talking about hip helpers for Ruby right out of the gate. (Low muscle tone tends to make babies legs splay out wide, and their muscles learn to do things in a less than desirable way. Hip helpers keep their legs together which allows them to learn to move with their legs in proper alignment.) While she was not big enough for them yet, when she did tummy time, or back time, or bath time, or anytime she was not being held by us, we would wrap one of these around her upper thighs. Now that she's older and stronger, we have to twist them once or twice, to add some tension, but we still use them. Her hip-helpers are great, but between the stroller, upstairs, downstairs, and play dates, the sweat bands have served us better. We have at least a dozen of them scattered in different places so there is always one accessible.

Friday, January 10, 2014


Every kid gets hurt in sports at some point, and tonight was by no means the worst it will ever be. But now it's starting to feel worse than it did when he was younger, even though he probably got hurt more then....
Eli took a really hard fall and got piled on by his entire basketball team towards the end of practice. It was all I could do to not run out onto the court and scoop him up into my arms. When the coach pulled all the kids off of him, he laid there on the ground, crying into his hands flat in front of him. It broke my heart, but I still hesitated to go out and get him.

Why? WHY did I hesitate? How silly is that?

But there are always those moments in parenting that make you second guess your initial instinct. For me, I felt frozen between my desire to make sure he was ok and comfort him and the realization that he's in that weird place the boys always end up in where it's no longer cool or even ok to show pain or to allow your mom to comfort. In the end, I jumped up right away, but took a step and stopped, took another two and stopped...continuing this silly pattern until I was at his side. I convinced him to go over to the sidelines with me to sit out for a few minutes. First he told me he wanted to go home, through tears, but once I realized that his injury was not from a broken bone, I encouraged him to stay and support his team for the remainder of practice, which was only another 10 minutes or so. He ended up going back on the court and playing a little bit, but then returned to me because his wrist was still bothering him.
When we got into the car we talked about it; the fall, the pain, him going back out. I apologized to him for not rushing out right away, as much as I wanted to. Then I asked him if he would want me to also, and my heart melted when he told me yes. Oh how I love that sweet sweet boy. I love love love that he wanted me out there helping him. And I will not hesitate next time..I will NOT. Eli still wanting and needing his mother's comfort when he's hurt reminds me of how 'young' my growing boy still is, even for his age. Eli has always played well with older kids, but he is younger emotionally and in wisdom of the world. How my heart already breaks for the many times that his innocence will be lost through teammates teasing him or kids at school or just life.... I love how 'protected' he has been so far from those rites of passage, but knowing they will come (because that's real life) makes me sad. Some hurts I will not be able to fix...