Monday, June 30, 2014

Just Another Maddux Funny

That girl....
I make up 'morning work' for the kids each morning. In an effort for them to not lose everything they learned in the last year(s), they do some math and/or reading and/or logic each morning while they eat breakfast. Nothing crazy, but enough to keep their brains from rotting.
This morning I incorporated some good ole language arts. Maddux's work required her to identify some adverbs, some pronouns and some synonyms. She had forgotten what each of those was, so we went through them one by one.
When we got to synonyms, I asked her if she knew what that was. She looked at me a little quizzically and then said, "Shhhh Shh Shh", as she made a shaking motion with her hand. "You know, like on yogurt." And then she put her hand down and looked at me very seriously, indicating that she absolutely meant what she just proclaimed.
They don't make many like this one....

Sunday, June 29, 2014

VBX 2014

So fun.
Every year this week is SO fun.

Ruby got to hang out with the other babies for the first time this year. She did not think that was SO fun. She did ok, but considering the hours were 5:30-8:30PM (bedtime, anyone?), and most of the other babies had fussy moments, she opted to voice her protest a few times as well. The awesome mommies that were in the nursery each night walked with her and rocked with her and kept her happy, but I don't think VBX is on her favorite things list yet.
Eli and Maddux, on the other time, still love it. This year's theme was Pirates and X Marks The Spot. Maddux had many friends in her group, as did Eli. Water balloons, pirate ships, eye patch wisdom, worship song and was awesome. The week was made even better when Lehr volunteered himself for a guide-game which turned out to be a dance contest. 

Oh yes, it did deliver.

Pincer Grab

One of the many things we are working on is improving Ruby's ability to pick up things with her pointer finger and thumb. When she's shoveling in finger foods eating, she still tends to 'rake', using her other fingers. Sometimes she uses the pointer and middle finger, but her palm is always involved.
We've tried to give her one puff at a time with varying success. Oh my, how time consuming is that! We still do this sometimes, but whenever we give her something on her tray, she reverts to the rake.

We then tried taping her fingers. She did ok with the tape, but because of the whole-fist approach she takes to eating, the tape was soaking wet after just a minute. That made tape-removal very difficult; taping was a one-time thing.
For now we have landed on the socks. I put two small holes in the feet of old Ruby socks for her thumb and pointer fingers. Then we put puffs or other finger foods on her tray and she has some practice using the pincer grab. The socks do get quite dirty, requiring washing after almost every use, and it's not perfect because she still can push against her palm a little, but for now, it's our best option.

Saturday, June 28, 2014

Bright Eyes

Ruby had a minor surgery on her eyes this week to 'unplug' her tear ducts. Even though the other kids had weepy eyes for the better part of their first year, they self-corrected just before surgery was needed. Ruby still looks like she's always got a tear on her cheek. In this process I've learned that our eyes are constantly tearing, to clean the lens, etc. The part that's plugged is the 'drain' for the tears. Instead of Ruby's draining (into her nose, actually), they pool up and spill onto her cheeks.
The whole family went to the surgery. It was such a quick procedure that Lehr and I figured it was easier to just go than to try and find kid coverage so early in the morning. Ruby and I got to the surgery center bright and early, and Lehr and the older kids trailed behind, arriving just before Ruby was taken back to be put under. Once they took her, we were moved to a post-op room and Ruby returned to us within a half hour. Adorable little sleeping baby on a big stretcher. She woke up pretty quickly after that, cried for a few minutes (very briefly, actually) and then sipped on some juice. Good as gold. The kids and I took her home and she was happy and herself the rest of the day.

Monday, June 23, 2014

Look Out!

One of the most anticipated moments of her short life so far occurred this afternoon; Ruby crawled!!

Pretty much every exercise we've done with Ruby, almost every single PT session, and the majority of our 'play' has been in an effort to prepare Ruby for mobility. While she's been rolling, sitting up, and inching her arms and toes to move around her play area for quite some time now, she has yet to army crawl or even inch worm so far. Today things took a big turn.

Just before nap time I told the kids that I was going to do some PT with Ruby for about 20 minutes. I started with her version of pull-ups and progressed to working on cruising. (She stands forever, but doesn't appear to want to cruise.) It was a particularly frustrating session as Ruby was not showing any progress on the cruising things I've been working very hard on with her every day for the last week. To finish out our time, I enticed her with some puffs to do some army crawling. This is another area I've been working with the same set of exercises with for a looong time with no progress. Much to my surprise, Ruby resisted almost immediately, but it was because she decided to try the REAL crawl instead of the army crawl. HOOAH!!

After a few passes, I had the kids video a few attempts. Of course her best runs were not caught on film, but we still got a good representation.

Wednesday, June 11, 2014

Summer Swim

Here we are, in another swim season. Every year we start off with a bang, practicing after school each day for the last few weeks of school and transitioning straight into the fast-paced June craziness. This is one of the 'bonus' years for Eli and Maddux; with summer birthdays, every other year they will be at the top of their age group. This means that they opt to practice 'up', but usually still swim with their actual age group. This year, however, they asked Maddux to swim up for half of the meets! She got to participate in several relays (both medley and freestyle) with the older age group.
Eli always swam in events within his own age group, but he remains to be one of the few swimmers proclaiming to enjoy the IM (Individually Medley). He doesn't always finish first, but he loves swimming and his skill set is so impressive.


The past two weeks have been action packed! Grandma Cathie and Grandpa Jim came to visit, just in time for Ruby's first birthday. As always happens, we thought we had plenty of time to hang out, but the days flew by and they were gone again before we knew it.
While they were in town, we did several fun things. Bowling, pool visits, dinner dates, walks, 18 holes of golf, a Gigi's visit, roller skating....and that's probably only half of it! Each kid got ample one-on-one time with Grandma and Grandpa (including Ruby), and Lehr and I even snuck away for 48-hours. Life is good!

Monday, June 09, 2014

Stuffed Scribbles

For Ruby's first birthday, I wanted to help the kids get her something really special...hopefully something that she'd have for years and be able to one day know that they gave her when she turned one. I randomly saw a stuffed animal made from a drawing online around the time she was born, and that sounded like the perfect gift. Tracking down a vendor that was still creating them OR not in too high a demand that they were still accepting orders was a little tricky, but by March, I'd secured someone who could guarantee a May delivery: Stuffed Scribbles.

When I posed the idea to Maddux and Eli, they both thought on it and came up with the idea to make dolls of themselves rather than an animal. Their reasoning was that she would be lonely when they were in school all day, so the dolls would help her have them with her always.


They did a few rough drafts, but ended up with these drawings.

The final products arrived a few weeks before her birthday.

Ruby loves them.

Sunday, June 08, 2014

Therapy Update

Try as I might, I cannot seem to keep up with Ruby's therapy updates. She moves so fast through her milestones, meeting goal after goal! This update has a little less progress, but that's only in comparison.

Physical Therapy
She has not made much strides in this area lately. She is not crawling or cruising, BUT she is taking one 'step' crawl here and there. We are still working tirelessly on army and regular crawling. Ruby will stand at a short table or couch level support and play for a long time, and she will pull from sitting on a seat to standing as many times as you'll let her.

Occupational Therapy
Ruby is waving. A lot. She loves to wave at people and will do so again and again and again. She will imitate some actions (banging toys when we do, dragging toys when we do, etc.), but has yet to imitate sounds on cue.

Speech Therapy
Ruby is saying 'MUHH!' and signing more. She will give 'dadadada' all day long, but not in reaction to Lehr (so it's just a babble at this point). She will sometimes sign all done, and she will sometimes point to her hair or nose when asked to.

Ruby's First Shindig

When Lehr and I started to plan Ruby's first birthday, we initially thought of keeping things small, as I usually prefer to do. But individually, the wheels started turning for both of us in the direction of including much more of the larger "Team Ruby". That type of thing always stresses me out because we do not have a basement or any other adequate space in our house to host such events. Even with our plan of the backyard as location, the threat of rain is always a factor. Lehr assured me that summertime travel and weekend schedules would keep our numbers small, so we'd be lucky to have even half of our invite list attend.

After one day, five families had already responded 'yes', and halfway through the week, we were up to ten.

The night before her party, only one family had responded in the negative and our number was 51. AND the forecast was for rain.
Thankfully for my sanity, we woke up to a breezy but sunny morning. Grandpa Jim and I blew up 50 helium balloons and put them all around the yard. We set out muffins, protein bars and fruit cups on the back porch and hung a few clothes lines of Ruby pictures for decoration.
Starting at 9:30, all of Ruby's guests arrived and enjoyed our outside accommodations while Lehr and I tried to make the rounds with her. We centered her high chair in the midst of her fan club and let her have her own cake. She was very observant and quiet during the whole singing and candle blowing fanfare; I can only imagine how confusing that must be! Regarding her response to the cake, she didn't have much of one. She slowly and methodically picked up pieces of frosting and sometimes a little cake and ate them, very much like she would any other food. The kids surrounded her for the whole process; they wouldn't even be swayed by a cupcake of their own!
We let her go at it for about thirty minutes until most of her guests started to clear out. When we took her out of her chair, much clean up was necessary, as she had the orange frosting everywhere. The timing worked out perfectly for her to sleep off the party excitement just after the last guest left.
When Ruby woke up, the kids were chomping at the bit for her to open her presents. They each got her a personalized stuffed 'doll'. (They drew themselves and I found a woman to create a doll based on their drawings.)
All joking aside, Lehr and I were so amazed and humbled by the response to Ruby's party. Most of the families that came had one, if not two, other commitments that day, but they still made sure to come by, even if just to see Ruby and her cake. The amount of love and support we have felt from Team Ruby is unparalleled and we couldn't have asked for a more perfect celebration.

Saturday, June 07, 2014

Already A Year

Dear Ruby,

Where do I even begin... Your first year with us has been full, oh so full. Full of 'new', full of baby, full of therapy, full of doctors, full of wonder, full of discovery, full of hope. At the center is you, glorious you.

When we first brought you home from the hospital, Maddux and Eli were enamoured and totally interested in your every move and sound. I thought that would wear off at some point, but it hasn't. They want to see you the minute they get home from school, they want to hug or kiss you as soon as you are in the same air space as them, they want to be touching you any chance they get. In fact, when asking Maddux if she wanted to do the 1-week or 2-week sleep away camp, she told me, "Two weeks is too long. I'd miss Ruby."

You have such an effect on everyone around you. This last year has found a group of admirers (Team Ruby) rallying, following, supporting and loving you, every step along the way. I even had to create a Team Ruby Facebook page because the requests for photos and videos of you was filling up my feed. Your smile, your hard-work, your sweet spirit has captivated everyone who comes in contact with you, even if only through the computer.

Most of all, you've changed us, your family. You have made Maddux a big sister which is a role she was absolutely made fore. You have allowed Eli to be a big brother in a way he wasn't able to be with Maddux because of their closeness in age. You have given your Dad the opportunity to dote on another little girl, which is so fortunate for both of you because he is the best daddy, especially for you and Maddux.

And you have trained me to be a physical, speech and occupational therapist. You've trained me to look at every moment of my day in a very different way; I thought I was efficient with my time before, but you've shown me that every moment counts when it comes to working with and loving you. We have such a strong bond, you and I, and I know it's greatly due to the amount of work you put in each day with me. Yes, I'm present for the work, but you are the one pushing me to find new ways to challenge you with your therapy; you are such a determined little rock star!

You're training me to be an advocate. And to be more accepting of differences in others that scare me. Before you, I had never really interacted with kids with special needs. I definitely had a fear associated with saying or doing the wrong thing... A year later, I'm drawn towards kids with Down syndrome. I seek them out in a crowd, and when they are within reach at Gigi's, I grab them for a snuggle. How you have changed me, Ruby. I'm constantly finding myself in contact with parents new to the diagnosis and I enjoy being able to show them the amazing ride they are in for. All because of you.

Happy Birthday, Ruby!!

1 day old!

1 year old

Friday, June 06, 2014

Golf Pro

When the kids went to visit my parents last summer, my dad took Eli golfing...the whole experience with the golf cart and everything. Unfortunately it was a crowded day, and Eli may have felt a little overwhelmed. Not that you'd know it from talking to him; he has been asking to go again all year. So when Grandpa Jim booked his tickets for Ruby's birthday, Eli's first request was another day of golfing. As luck would have it, a friend of mine just handed down a great set of smaller clubs for Eli.
The two of them opted to tackle 18 holes and, as luck would have it, the day was slated to have some dicey weather, so the course was pretty empty. This allowed for Eli and Grandpa to enjoy golf at their own pace. However, Eli started the morning with chipping a ball in on the first hole. Not too shabby, especially for an 8-year-old rookie!

Monday, June 02, 2014

Heart Check

When Ruby was born, one of the many specialists that came to check her out was a cardiologist. At the time, the doctor found that Ruby was in great health; she had a small opening in her heart, but he assured us that the vast majority of infants have the same at birth. Should we have encountered any irregularities, or our general doctor heard any murmur during her routine check-ups, we would revisit before a year. That didn't happen, so our appointment on Friday was the first appointment we had since last summer.

To spare you the suspense: Ruby was given the all-clear.
The nurses and PA's and techs came and listened and hooked her up to wires and listened again and hooked her up to a few other wires and listened again. Towards the end of the listening, one of them commented that her appointment may end up being one of the shortest ever. (That would be a GOOD thing.) And when the cardiologist came in to meet us (the same one we saw when Ruby was born), he confirmed that we would not have to complete any more tests: Ruby's heart is perfect. He then went on to inform us that she wouldn't need to see a cardiologist again EVER unless something new developed. Music to our ears!

Sunday, June 01, 2014


As most little girls are these days, Maddux is fully in the know when it comes to Frozen music. She knows the words by heart and sings them multiple times each day. Last week, Lehr turned on the camera and got her singing the snowman song. Unfortunately, he accidentally edited it to replay on the first half of the song, back to back. Good news, bad news: you get to hear her twice, but you have to watch her wipe her nose, scratch her ear, and pick her nose twice.