Visitors

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!

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.

Perfection.

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.

 

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.

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

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!

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!

Songbird

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.

Race Car Driver

Just a little post-dinner fun one night.... I think her head only bonked the camera once.

201405RubyCar from Nicole Eliason on Vimeo.

Swim Time

 

The kids are so excited to be back in the pool! We had two weeks of practices after school and tonight we had a practice meet. Both Eli and Maddux are at the older end of their age group, so they will do well this season. 

They usually opt to swim "up" during practices, but they still have to compete in their actual age bracket. This means that Maddux still only swims in three events all night.

Eli's favorite is still the IM (Individual Medley), which is the event that most of his teammates dread.

Ruby did VERY well during the practice meet, hanging with Lehr while he served as lane judge all night.

School's Out.... For The Summer!!

The last day of school is here! Both kids had a very fun week, signing memory books and class shirts, playing outside more than working inside, and participating in class party type activities. As has happened on a few 'last days', I wasn't able to meet them at the bus stop with Popsicles; Ruby had a big ENT appointment at the same time as bus drop off today. To ease my mommy-guilt, I arranged for a friend/neighbor to take the kids after school which meant that Maddux and Eli got almost 2 hours of playtime with their best friends. (Probably better than mom and Popsicles, actually.)

The first thing we did this summer? Bucket list. This year's includes "breakfast for dinner AND dinner for breakfast", "family badminton" and "nap outside". I think I'm going to like this summer!

First Tooth

FINALLY Ruby's first tooth broke through this week. Her bottom two center teeth have been just below the surface of her gums for the last month, at least. Sometime Tuesday night or Wednesday morning, the tip of one of those teeth made its way to the surface. Leading up to the breakthrough, Ruby wasn't too unhappy, but now that it's out and moving up quickly, she's had some fussy moments.

Therapy Update

I seriously keep waiting for some type of plateau, but so far, Ruby hasn't found one.

A few weeks back we started working with a tension rod in Ruby's closet. Before that we  used a wooden stick to help her work between sitting on a bench to standing. She LOVES this activity and will do it as long as someone will sit with her.

Lehr built this cute little bench for her and we use it for sitting and for kneeling in front of (as a 'table' to play on and support herself). It is the perfect height for her right now because it allows her hips to be just higher than her knees. He knows he will be building new benches very often because this girl is a growing machine. She can also sit on that bench and reach for something flat on the ground successfully. (This requires a LOT of stability and balance.)

Ruby is still not crawling, but she tolerates us or the therapist 'helping' her to crawl. In fact, she doesn't seem to mind. (When we first started trying this months ago, she would cry and cry and cry.) Ruby can now push herself back into sitting from a belly-on-the-ground position. She is very proud of this trick and does it all day long. From sitting, she will rotate herself around and get onto all fours, but she usually doesn't stay there too long.

Regarding eating and speech, Ruby is eating all kinds of new foods. She still doesn't have any teeth (though one is about to pop!), so we are still a little limited in hardness of foods. She will eat most fruits that are soft in large chunks. She just 'chews' them with her back gums: mangoes, pears (her fave), peach, nectarines, berries... And she recently started eating Gardenburgers too. So far she LOVES them. Beans, rice, scrambled eggs, oatmeal, yogurt, wheat germ...as long as it doesn't require teeth, she'll eat it.

Ruby is drinking water from a straw much more successfully too. In fact, she can even hold the cup most of the time (though she prefers to throw drop it, as most kids do).

Ruby is signing 'more' for food, but not for play or anything else. She sometimes signs 'all done' at the end of a meal also. During a round of "Row Row Row Your Boat" the other day, I really think she was communicating back and forth with me at the end, but no video yet.

Both therapists are happy with her progress. In fact, the last time the PT came, she couldn't believe what Ruby could do. And after 'testing' her with a few things, witnessed her pull herself to standing from the floor, all on her own. At that point she said she expected Ruby to answer the door the next time she came to visit.

Eli, the Poet

In Eli's Target class, they worked on some different types of poems this semester. He brought home his collection of poems last week; my favorites are below.

Bronchiolitis

I totally had to google that so that I would spell it correctly.

Bronchiolitis.

Two days before we left for Jazz Fest I ended up at the pediatrician's office with Ruby. She woke up with a little bit of a weepy eye. Not anything to cause too much concern, but with us leaving town, Lehr and I agreed we should probably get it checked out. The pediatrician agreed that Ruby didn't have pink eye, but was likely starting to fight off some kind of virus. She prescribed some eye drops for us to keep her eyes 'clean' and sent us on our way.

 The morning of our departure, Ruby started coughing and was a bit congested. Still nothing major, as she'd been working on her first tooth for a few weeks. She woke up once during the night on Wednesday, but went back down easily. She was a rock star on Thursday, enjoying Jazz Fest and eating everything in site. Thursday night, however, she woke up three or four times, coughing and stuffed up.

Friday morning found Ruby fine again; as long as she was sitting up, her congestion was tolerable and she was her usual self. Unfortunately Friday night was too much to ignore any longer. Unless Lehr or I was holding her on our chest (upright), Ruby could not sleep. Her congestion would not let up, which meant she was coughing and snorting all night. I ended up with the last shift before morning, and when I brought Ruby into the room where Lehr was sleeping, I told him that we were going to have to go home. He immediately agreed. We woke the kids just after 7 and grabbed breakfast quickly so we could get on the road.

We planned to drive straight to the after hours care that our pediatrician recommended in the past. They were only open until 7PM, so we knew we'd be cutting it close. When we were about two hours away, I had Lehr call our doctor to make sure they still recommended urgent care, given her symptoms. As any parent would expect, the nurse on-call recommended going straight to the ER. (Any time you're dealing with respiratory stuff, it's better to be safe than sorry.) So I dropped the family off and Ruby and I went straight to Children's Healthcare of Atlanta. (SOO blessed to have that available to us!)

The ER docs and nurses suctioned her nose, gave her a breathing treatment, and one dose of antibiotics. The doc saw fluid in one of her ears, but it wasn't infected. She didn't want us to wait and see though; better to treat it as though it were already infected. Outside of the fact that Ruby was exhausted (it was 7:30 before we even pulled up to the hospital and she's normally asleep at 7), it was a painless process. Two weeks later she was off of the inhaler and only had a slight lingering cough.

Jazz Fest 2014

Ruby's first fest did not disappoint! We had AMAZING weather this year; far better than any year ever (and this was our 8th Jazz Fest with kids!). We arrived as the gates opened on Thursday. Between the early arrival and it being a weekday, the crowds were VERY minimal. I think the high was 72-degrees and there was an amazing breeze. (Seriously thought we were in San Diego for a minute.) Ruby napped on and off a few times, ate some red beans and rice, and posed for many pictures. We hit 4 or 5 stages that day, leaving fest somewhere around 430PM. The highlight was probably Stanton Moore, in the Jazz Tent. Eli and Lehr sat up front for that one, taking in all of the drum acrobatics.

We left fest to grab a quick dinner before an evening show. Lehr planned ahead and got us front row 'reserved' tickets at Preservation Hall for their 8:15 show. We walked past a line of about 75 people to go through the velvet rope and sit up close for the awesome performance. Ruby nodded off at the end, but I think she enjoyed it.

The next morning we got up early enough to get breakfast and still arrive at fest just as things were getting kicked off. We danced and did a few second lines in the Economy Hall tent, ate some delicious food, sang along with Cowboy Mouth, painted our faces, ate some more, met up with friends, danced some more, blew some bubbles, hula hooped....did I mention that we ate? I think we lasted until 5:30 this day. By that point, we'd done so much and the kids were itching to hit the pool at the hotel. (You'd think it was some great pool the way they built it up.... It's a very standard, indoor pool, but I guess they have so many memories of it that the excitement takes over.)

The underlying story here is Ruby's sickness. We left town Wednesday afternoon and she was a bit congested and was starting to cough a little. While she was happy and 'fine' throughout the day(s), each night got worse and worse for sleeping. By Friday night, Lehr and I traded off almost the entire night; she could not sleep if she was lying down, so we held her upright so she could doze off here and there. By the time the sun came up on Saturday morning, Lehr and I agreed that we needed to head home to get her to a doctor. Unfortunately that meant we missed out on a trolley ride, beignets, and a bang-up line up for Saturday's Jazz Fest. The kids were great sports about it though, never complaining at all.

2014NolaJazzFestWEB from Nicole Eliason on Vimeo.

Final Baseball Game

Eli had his last baseball game for the season this morning.

The team played well, but they lost, eliminating them from the post season. Eli was mostly at third base and pitcher this time around, proving once again to be a pretty solid utility man. This was not just Eli's last game as a Yankee, but his last as a Pinto league player; next season he'll be in the Mustang league. That's kid-pitch...crazy!

One positive of being eliminated: swim team starts on Monday. Now we don't have to fit both sports in at once.

Family Band

Eli has played with the worship band a few times at church; several occasions in C3 (the kids' service) and once or twice with Lehr in the main service. This weekend, however, Maddux joined him on stage! She hasn't really expressed much interest in participating in the service so far...even when she was taking keyboard lessons, she preferred to play in her room rather than give a 'concert' to Lehr or I. (Very contradictory to her personality, I know.) But she begged to go to Eli's rehearsal with him since she'd been singing along in the laundry room every time he practiced the songs on the drum set. Lehr obliged, and Eli (ELI!) encouraged her to sing with the vocal team that week because she was good. (ELI said that....shock and awe!)

As it ended up, the only other singer was a mom we know well. She was very patient and encouraging with Maddux, and by the end of the rehearsal, not only did Maddux participate, but she was not scheduled to sing on Sunday as well!!

There were moments of greatness, there were moments of randomness; all in all, Maddux did well for both services. The first service found her wearing her big floppy white hat (no video) and really getting into the hand motions. The second service found her fidgeting a little less, but no more hat. Eli was great, showing how much hard work he'd put in all week.

So so proud of Maddux for taking up this responsibility. So so proud of Eli for showing his sister love in a way he very rarely does.

Sidenote: the week after her debut, Maddux was out on the back deck with her easle....this is what I found later:

Easter

 We actually remembered to dye eggs this year! Though Eli wasn't really into it. I even found a 'tie-dye' kit to use, but after doing one egg, Eli opted to play outside.
The day before Easter was supposed to be our neighborhood egg hunt, but rain caused a cancellation. That meant that we had 30-40 prepackaged eggs waiting to be hunted. Luckily we had planned to have some friends come over the next afternoon, and those friends have two young kids. Before they came, I hid some 'hard to find' eggs the kids received from Grandma Cathie and Grandpa Jim. I think I had as much fun as they did! The eggs were colored to blend into outdoor landscape: total success. There were only 12 eggs, which I re-hid three times, and each time it took at least 10 minutes to find all eggs (sometimes with big hints from Mommy).

When our friends arrived, the adults hid our eggs (we had 30ish and they had at least as many) all over the back yard. Then all four kids collected for the better part of our time before dinner. No egg hunts for Ruby this year, but the kids shared their (empty) eggs with her.

Game Ball

Eli had a late game tonight, meaning only one adult could attend while the other stayed home with the girls so they could have a normal bedtime. Since it was so nice out, I asked to go so I could take pictures. Amazing night. Amazing game.

Eli played really well. His glove recently broke down, so he's been experimenting with some others in the last few weeks. Tonight he ended up using the new one he got me for my birthday. He didn't have much of a chance to practice with it, so there were a few fumbled catches at first base in the first inning. But he went on to hit a double, hit another one almost out of the park (RIGHT at the fence!), and make several outs at first. One of the best plays of the night was the catch he made in left field. There was a strong pop fly hit deep, almost to the wall, and Eli made a diving catch for the out, shocking everyone. Grins from ear to ear.

Appropriately so, Eli earned the game ball. (The coaches do their best to make sure every boy earns at least one ball per season. That sometimes means the ball doesn't always match the play.)

On the ride home I told him how proud I was of him. He worked hard to have a good game, but the best part was how he learned from the mistakes he made in the first inning or so and moved on. Eli has struggled in teh past to 'move on' from small mistakes, often times letting them get the best of him for the whole game. Tonight was the opposite; he totally rallied, as did the team, and Eli's team came back to win after being behind and then having a very close game for a few innings.

Happy Trails

Over Spring Break, Lehr and some landscapers cleared out a bunch of the land we have just outside of our back fence. The kids play back there often and Lehr has always wanted to create a fun space for them over there.

After the land was cleaned up (not totally cleared, but 75% of the 'junk' removed), Lehr laid down some walkways that he repurposed from our 'old' backyard. They fit perfectly in the initial part of the trail created. 

Maddux was a big fan of playing over there before this, but now that it's cleared, she's over there even more. The other day she and Lehr went out there with a bunch of wood and a level and started plans for some type of playhouse. Life is good.

Roller Skating

What a fun spring break! The kids and I really enjoyed several days of just hanging out and having fun. We mostly played in the yard and at the house, but on Tuesday, I did take them roller skating. Eli went once when he was four, but nothing since then. Maddux has been in the cul de sac since she got her roller skates, but she'd never been to a rink.

So. Fun.

Eli was less steady on his feet, requiring the use of a PVC 'walker' with wheels on the bottom to help with balance. Maddux zoomed right along, only falling a few times. Since I had Ruby in the backpack carrier, I opted to stay in tennis shoes. Both kids skated for almost two full hours and talked the whole drive home about going again some time soon.

As luck would have it, Lehr took Friday off and we went again. Since Lehr's knee still isn't in the best shape for skating, he held Ruby while I skated with the kids. I invited the kids' friends, so there were five total kids on skates.

So. Much. Fun.

Eli and Drew were the oldest of the five by at least two years, but they were the least steady on their feet. Too funny. Maddux was probably the best again; that girl has great balance on skates, even though she tends to be klutzy on solid ground.

One Of Many Talks

We initially chose to not have a sit-down formal discussion with Eli and Maddux about DS, but a few months into school, I had a fear that a child that saw Ruby may have some connection with DS and mention it to one of the kids, catching them off guard. In an effort to be proactively 'in charge' of the distributor of info for them, we brought it up during dinner one night. Nothing over the top, but just a 'hey, you know how ruby gets PT each week, that's because she has something called Down syndrome'. Very light, very generic, but we introduced the term. Since then we've had a handful of little conversations, but they've all been very little and not focusing on the science of it, or anything beyond Ruby right now.

 I got the opportunity this last week to be (hopefully) a calming voice for a local mom whose unborn child was recently diagnosed. Since that opportunity came to me via email while the kids were with me, I chose to share why I 'checked out' for a few moments to answer said email. I talked with Eli and Maddux about how they know that Ruby has Down syndrome and I asked them what that meant. They said "PT' and Eli added that she may learn things a little slower. I then asked if that was a big deal and they both said no. I tried to explain how it's not, but some adults (like me!) think it's a big deal if they don't know a Ruby...they get scared sometimes and this mom was scared. I asked them what I should tell her to make her not scared..if they had any advice. One of the questions I asked them was "How would you tell one of your friends to play with a baby with Down syndrome?" Eli shrugged up his shoulders and said in disbelief, "Like any other baby!"