Superstar

Once again, I'm here to brag about Ruby and her amazingness.

Ruby's physical therapy is still going really well. She is sitting up (assisted) so much better, holding her neck VERY high for longer periods of time, rolling and rolling and rolling, and grabbing onto (and holding) beads and shirts/blankets constantly.

This week we introduced a new seat for Ruby. In the past, we've worked on her neck, back, and core muscles for sitting by having her straddle my leg and supporting her rib cage. Then I could place my fingers under her chin to assist her head control as needed (usually not until she fatigued). That was a big step for us, but now she is even stronger! Her therapist brought us a bumbo-ish seat that has a support/play-area that moves all around (very similar to an exercauser). We stuffed the seat a little to help make up for the gaps, added a stiff magazine behind her to allow for head support when she got tired and away we went! I keep that seat upstairs for her to play in and downstairs I keep her regular bumbo, with the tray, for her to hang out in while I cook. The combo of using those seats at least once a day (and we're talking about no more than 10 minutes at a time) has strengthened Ruby's midsection so much, in just a week!

One of Ruby's newest tricks is one she didn't even pick up in PT; she just came about it like any other baby would. Ruby is doing crunches! When I put her on any surface that is not 100% flat, she contracts her abdominals and pulls herself up, as if to sit up. Check out her moves!!

This morning Ruby's therapist (Sherri) was blown away by the progress Ruby had made in such a short time. We started working on a few more things (mostly supported knee sitting while leaning on a sturdy flat surface) because of how strong she has become. Sherri couldn't believe how well Ruby supported herself in this new position, without assistance, for such a long time. And her free play wiht her hands is comign along too - go pectoral muscles :)

What If We Knew...

Many people have asked me if we tested for Down syndrome before Ruby was born. We opted to not have any of the prenatal tests: I thought about doing the screening, but quickly realized that it was not totally accurate and we knew it wouldn't change the outcome anyway.

With Eli, we knew about his clubfeet at 20wks, and it helped us to research and prepare for doctors and casting. It was a huge blessing for us to know ahead of time so that we could hit the ground running with his treatment. Not that all clubfeet are the same, but the initial protocol for our chosen path of correction is pretty straight forward for all clubfeet. I am so thankful we did not know about Ruby's diagnosis ahead of time for the pretty much the same reason. Her diagnosis does not have a 'standard' treatment plan, nor does it have typical presentation. Had we known, we would not have chosen a different outcome for her, but the stress endured would have been bad for my pregnancy and all for naught, as we wouldn't have known what *exactly* we would be dealing with. We still don't. Just like with Eli and Maddux, we have to watch our kids develop, one milestone at a time. We know of things Ruby will likely struggle with, but there was nothing we could have done while she was in utero to help her during her first few years.

When we first found out about Ruby's extra chromosome, one of the main things that kept me strong, that kept me joyful, that kept me from giving in to the fear was having Ruby physically present with me. Her soft skin, her baby smell, her little fingers and toes, her big eyes....all of those things made it much easier to focus on the baby and not the diagnosis. Had we opted for prenatal testing to determine if she may have Down syndrome ahead of time, I think everything would have been so different, and not for the better. I think the diagnosis would have overshadowed the baby. I think we could have easily over worried, over stressed, over planned, over researched. All for scenarios that didn't end up applying to Ruby. I think I could have succumbed more to grieving for the baby I'd planned on having. I could have spent days, weeks, months disconnected from my kids and husband, struggling with fear and sadness...time wasted. (That is not to say I have not grieved, or struggled, but I think it has come and GONE in smaller chunks here and there because every time I hold Ruby, the joy outweighs everything.)

Something we were not afforded (outside of the first hour) but we tried to give to some friends and family was the opportunity to see Ruby via pictures and videos, or to meet Ruby and get to know her before knowing her diagnosis. Our intention with that was to establish a connection, a familiarity, a bond, without anything else getting in the way. And when I say 'anything else', I mean the baggage most of us have tied to so many medical conditions or diagnoses. I had it...I still have it. When I heard the words "Down syndrome" certain thing immediately popped into my head: physical characteristics, delays, handicaps. Because it is something that I had no prior personal connection to, stereotypes are all I had to base my reaction on. Without that prior experience, we are all guilty of that when we see or hear about a particular condition. I think it's why termination rates are so high in pregnancies where DS or other abnormalities are detected. Sky high, actually. I can't help but grieve for those parents because of the amazing children they are missing out on due to fear. Because of ignorance. While termination would not have been our choice, the fear and ignorance would have still been there. And they would have been a much bigger part of my reaction to Ruby had I known about her DS before she was born. They may have gotten in the way of me really seeing her when she was born. Of course, my 'vision' was still clouded in the hospital.....I still had many dark moments of fear and ignorance. But there is something about holding a tiny squirming ball of warmth that softens any news.

Thankfully, I've been able to learn more about Ruby AND her diagnosis one step at a time, all of the while holding my baby in my arms. Realizing, as I read about some possible outcomes, that she is Ruby above all else. Just as Eli's clubfeet are just one thing that makes him up, Ruby's DS is just one of the many things that make her who she is.

Lice-pocolipse

Oye. I thought we were going to be safe since we'd already made it eight years with kids and without lice, EVEN through several class and neighborhood bouts of it. But no one is immune; this week lice entered our home.

A few weeks ago I caught wind of someone in Eli's class possibly having lice so I started looking through Eli and Maddux's heads each night. Since I'd never looked for lice before I didn't really know what I was looking for, but I still searched thoroughly. Nothing, nada, zilch.

Fast forward to this Tuesday when Eli comes home, plays all afternoon and then tells me at dinner that his head was itchy. Since he'd been running around all afternoon, getting his longer hair sweaty, I didn't think much of it. But I still checked. I checked for over ten minutes before I found one live lice bug. Holy moly. It was the EXACT same color as Eli's hair, so it was very hard to see, but I found him. Off to the shower to buzz his head. He didn't need much convincing and I knew it would make the whole process go much smoother.

I frantically checked Maddux's head for several minutes before sending her to bed to stay out of the way of any thing that could take residence in her hair. (She still has yet to show any signs of any lice existence.)

Once we buzzed him, we coated Eli's head in olive oil and vinegar (to smother anything living and then to loosen any eggs still there). After an hour we rewashed and then I combed, and combed, and combed, and combed (finding nothing further). All sheets, blankets, stuffed animals and backpacks were banished to the garage and/or washing machine and dryer. Are we having fun yet?

The next morning, I combed Eli's hair (nothing) and decided to keep him home, just to be sure. Maddux was still clear, and I hadn't yet found anything concrete in my hair either. Days and days (and days!) of combing *to be sure* followed, along with me pulling almost all of my hair out during the combing process as well.

Aren't you jealous?

Gotta Keep Your Head Up

Ruby is still trucking right along with PT, doing therapy sessions with Babies Can't Wait once a week, and once or twice a day at home with me (and Lehr and the kids too!). All of her hard work is definitely paying off! Most of the exercises we are doing know resemble some type of tummy time and focus on her neck, back, and trunk strength. We dabble in some sitting exercises (very assisted, of course), and a few 'pec' workouts while she's lying on her back or side.

This morning I had Ruby on the floor in my room, doing our rolling exercises. That girl was amazing! I didn't catch it on video, but she would barely be on her stomach before pushing off and rolling to her back again. She and I played back and forth with that routine for a good 3-4 minutes straight, her meeting my roll with a roll of her own every time. Finally she slowed down and hung out on her stomach for tummy time. That's when I pulled out the camera. Check out how controlled, high and stable her head and neck are!!!

Ruby's Big Day Out

Today Ruby had her first appointment at the Emory Down Syndrome Center. We heard about the center when she was born, but had to wait until now to visit for her initial appointment due to her age. This center is just one more reason we love living in Atlanta; there are so many medical resources offered to us, regardless of what diagnosis gets thrown our way!

The appointment promised to be a lengthy one due to all of the information, questions, and exam that would occur during our visit. We were told the Emory Center would be a type of 'one-stop shop' for us in regards to keeping all of our various doctor appointments and tests on-point, and we found that to be true. First we saw a nurse who took some vitals, then a few genetic counselors, and finally the doctor. Dr. V is a developmental pediatrician who also specializes in genetics and Down syndrome. She was awesome and answered all questions we had (and even some we didn't). Ruby slept through part, fussed through part, ate through part, and performed through part; two hours is a long time for someone not even three months old!

Dr. V was pleased with what we told her was happening with our physical therapy, Babies Can't Wait, and Ruby's nursing. She urged us to call them if/when questions come up for us; she assured us that they are happy and willing to be our first call for anything concerning Ruby and her development. To celebrate the appointment, Ruby slept the rest of the day.

Favorite Things

I know this happened with at least one of the other kids, but I can't find a blog post about it anywhere. Just one of the many 'forgotten' moments, I guess....

Right now one of my favorite things about nursing Ruby is her hands. More specifically, what she does with them while she's eating. I know she does not totally get the correlation between her movement and the end result, but she is very consistent in what she does. Ruby's top hand always comes up and grabs my shirt and 'holds on' while she's eating. I often grab her little fist and kiss it during nursing, so maybe that's why she stretches it up towards me? Either way, I love it. The other hand, the one that is usually 'down' is starting to end up around my back (just a little, since her arms are not that long yet). Once it's there, she opens and shuts her hand, somewhat randomly, which ends up like a little massage or back-rub. Love, love, love.

Triathlon

Last year, Eli competed in his first Triathlon. We trained all summer and he had a great experience. Maddux wasn't old enough, but we have been talking about her competing as well all year. Unfortunately, with the arrival of Ruby, our training has not been nearly as consistent this time around. Truth be told, it's been almost non-existent. The kids swam enough with swim team to train up for that part, so 'check'. We went for a few longer bike rides, so we'll call that 'close enough'. Two or three times, Lehr or I have taken them to the school to run their track four times (1/2 mile - the distance of the final tri leg): 'that'll do'. Finally, I had them work on their transitions last week, using the driveway as the transition area and the cul-de-sac as the race course. Eli sailed right through, remembering his strategy from last year. He and I tried to help Maddux keep her area orderly, but she opted for a more relaxed workspace. (She made it through her clothing change, but it did take longer because she was a little spread out.)

Today was the day to put all four components to the test. We got up at 5AM, all 5 of us, and loaded into the car. Check-in for body marking and transition loading was 6:15AM; race started at 7:40. It was actually a little chilly this morning, but both kids brought sweatshirts to wear before the sun came up. They lined up together (their numbers were only 5 apart); Drew also completed the race and had a number near them, which Eli was very happy about. The kids sailed through their swim, did great on their bike, and sprinted their run. The boys did very well, which was expected given that they were basically neck and neck the whole race (Drew finished first). Maddux was a bit behind them, but she really held her own. I felt bad that we hadn't trained her as much, but the great number of volunteers helped keep her on course. She walked a little of the run, but ended strong and earned her medal. (The race distance was 100m swim, 3 mile bike, .5 mile run. Eli: 28:51, Maddux: 42:07)

Sam

I grew up with dogs in my family. Little dogs, big dogs, yappy dogs and a dog who never barked. Because we had no less than 1/2 a dozen dogs throughout my childhood, I'm familiar with having a lost dog. One who got off of the leash, one who got out of the yard and ran away, one who disappeared from the backyard (likely at the hands of someone else who wanted that dog).... And while we never had it happen to us, I know from friends that sometimes these lost dogs magically appear days or even weeks later on your doorstep. What I didn't know was that the return story applied to stuffed dogs too.

Several years ago, six to be exact, Eli received a stuffed dog as a gift. Maddux had joined our family that week and Grandma Cathie bought Eli a little token. He named the dog "Sam" and of all the stuffed animals that have cycled through the house, he has been the only one to 'stick'. Eli adored him, but somewhere around two years ago, Sam went missing. We searched high and low, in and out, but no trace of Sam. Eli was old enough to not be inconsolable about his lost dog, but he was sad. When we found out that Ruby would be joining our family, I went in an all-out online search for a stuffed dog that looked similar enough to Sam; Ruby would give her brother a replacement dog. (Maddux also misplaced Knuffle Bunny on an airplane about a year ago and Ruby brought her a new one too.) Eli's replacement Sam, while cute, is not the same, but Eli loves his new Sam. End of story, right?

This morning, while the kids and Lehr were away, Ruby and I went outside to work in the yard. As we walked back towards the house from the mailbox, I saw something nestled up on the front door stoop. Upon further inspection, I saw that the item was, amazingly, Eli's lost Sam. I kept flipping him over and over, sure that this was an impostor...there was no way. But while he was a bit tattered, and covered in dog (or something) hair, he was definitely Sam. (And actually, considering the two-ish years he's been without a home or owner, he looks darn good.) The evidence was clear: when Eli was about four, he found a black sharpie and branded Sam with "Eli" across the dog's midsection. Those letters were faded, but still visible. Welcome home, Sam...we've missed you!

Worth A Thousand Words....

Ruby is smiling! But don't ask her to, because she smiles when she wants ONLY. I've had a phone nearby a few times to catch a quick video here or there, but since it's so unpredictable, no 'real' pictures yet. Soon, I hope!!

Test, One, Two...

Third Grade. While it's still not 'grown up' with letter grades or lockers, Eli's class this year is a step up in the maturity department. No longer does he have any type of centers or hand holding in the class. He and his classmates are expected to write their own homework down in their "navigator" (day-planner type notebook calendar), they get percentage grades on assignment and they will have standardized tests out the wazoo over the course of the year. The biggest thing right now is social studies tests. Eli's teacher started teaching on Greek Democracy right out of the gate, and Eli brought home a study guide after the first two days of school. We then found out that Eli was supposed to be reviewing that on his own as he'd have a test on the information from class(also included in the guide) at the end of the unit in a few weeks. We set up a folder on Eli's desk in his room where he could store these study guides, and we talked about how we (and he) needed to review them at least a few times each week.

Between other homework and life's busy-ness, I didn't get a chance to work with him until today. I asked Eli to pull out his study guide before he went outside to play with William, and he lightly protested, saying he knew it already. I told him that if he did, this 'quiz' would go by quickly, but I still had to check in on his progress. He wasn't bluffing! The study guide just reads like a text book, providing paragraphs of info about the topic, so I skimmed through and asked random questions of my own. He answered every one of them correctly and in his own words. Love it! I'm totally impressed with my little man's work ethic so far; he's starting off the year wonderfully!

Crazy Eights

I always say that birthdays sneak up on me, but eight? Seriously? 8?!?! That seems so impossible, especially because I can still remember when you were as small as Ruby...

Eli, your eighth year was another amazing one. You were in a second grade class with a group of older, bigger boys. Some kids might have backed off from being true to themselves when faced with some of the situations you were faced with during the school year, but you held your ground and you made it through the year, still 'Eli'. Academically, you impressed the teacher and us with your love for math, reading, and social studies. Whether it was learning about weather systems or buying books about the Civil War, your love for knowledge was obvious.

In the last year you had two seasons in the Pinto league of baseball. Big Time. You were incredibly fortunate to have a group of 5 or 6 boys on both teams with you, allowing you guys to strengthen as a team and grow together. You showed some great leadership on the field, and you really matured as a player. (Plus, you caught your first line drive out in a game!) And your coach for the second season hand-picked you for that team because of how well you complimented the previous team. He recognized you as a great utility player because of your skill and attention to the game and because you were (ARE) a great team player.

This year found you playing in a few praise and worship sessions at church. It started with Kids Jam, where you and a few other youth got to practice two worship songs on stage, but from there you've gone on to play a handful of times (as the ONLY drummer) in the Kids Ministry room. Wow. You've amazed everyone with your skills on the set. We love love love how much you love music! Many days you come home from school and all you want to do is go to the laundry room and run through songs.

You and Maddux are the best and worst of friends, for sure. You bicker like cats and dogs sometimes, but most days you find plenty of time to hang out and play together. I love seeing your relationship grow the way it has this year!

Spring brings Jazz Fest for our family, and this year was no different. You picked your favorite bands to watch on the big stage, and you hung in there pretty well, even when the weather was crazy. My favorite part of the weekend was when you asked me, all 7 1/2 months pregnant of me, to dance with you in the Economy Hall tent. I think we've danced every year that we've gone there.

Just before the end of school, we had spring break and you and I took a trip together. We went to Pigeon Forge, TN and spent a few days doing silly but fun touristy things. You were very attentive to me and took great care of your pregnant mommy, even when we hiked and you were tired. I realized on that trip how much of a "Risk Manager" you are, and how similar you and I are. Eli, you think things through before you do them and weigh the risks. That is not a bad thing!

As expected, your swim season was another great one. You practiced with the same age bracket as last year, but this was your first year swimming 'up'. The events that you thought would be hard or scary turned out to be your favorites. The team was lucky to have you for the butterfly leg of the relay, and your 100 IM was amazing, especially for a 7-year-old. You, Drew, Brooks and Grant made a great 7-8 Boys team; I loved the camaraderie you four had.

By far, the biggest thing that happened to you in the last year was becoming a big brother again. You were so excited when we told you that you were going to meet your newest sibling; both you and Maddux beamed with anticipation. When we found out Ruby was going to be a girl, you were a little disappointed, but that didn't last long at all. And then when she arrived....there are no words. Your joy in meeting your sister for the first time was so cool to see. And the smile on your face, the one that never left, only got bigger as you said, over and over again, "She's so cute!" I will never forget the day you held her for the first time, Eli. And we have seen you grow in maturity since she joined our family; you take care of her so lovingly and protectively. We know she will always have her big brother watching out for her.

On this day, your eighth birthday, your dad and I are so proud to claim you as ours. You are my sunshine. I love you more than Harry Potter.

Night Shift

When Ruby was born, Lehr and I decided that once we thought she was ready for a bottle, he would feed her at the 11PM time slot, to allow me a little extra sleep. (My alarm clock goes off at 4:30am with or without her.) She's a rockstar, chugging that bottle for him, and it's been quite a while since she's needed anything other than that between the hours of 8PM and 7AM. Unfortunately, because we do reserve the bottle for that late night slot, the kids hadn't had a chance to feed her much yet. After Eli's party, however, I had a dinner to go to, so the kids got to help Daddy feed her just before bedtime. They love, love, love doing that. Maddux really got into it, dabbing her lips when some spilled. And Eli got all snuggled in his bed before Daddy brought Ruby to him, because he wants so much to have her sleep with him some night.

A few nights later, Maddux got to feed Ruby again, purely unplanned. Lehr had just started to give Ruby her 11PM-er when Maddux woke up to go to the bathroom. Lehr called her in and let her take over for him. I didn't get to witness it, but Lehr said both girls slept through the feeding.

Eli's Party

Eli has been planning his 8th Birthday party for months. When he turned 6, we rented a local indoor soccer field and he had about 18 kids join him in a huge soccer game, all the while raising money to buy soccer balls to send to Kenya. It was a blast and one of the most memorable birthdays we've had in our family. This year, Eli wanted to play flag football. Then he wanted to play baseball. Then he decided on whiffle ball. Back and forth, around and around, but the core idea was the same: he wanted boys and their dads to get together to play some sports.

Since we've been very last minute this summer, the party didn't come together until a week before it happened. Eli decided on flag football, with a possible side of kickball. We rented the same space and bought some flags in preparation for the big event. Because we were so last minute, we only ended up with about 8 of Eli's friends (plus Maddux), but he didn't mind. The boys (and dads) played football, then kickball, then soccer before having ice cream sundaes on the sidelines. We got water bottles for all of the boys, and Eli asked for donations for charity:water instead of gifts. He raised about $300. WOW! We had several conversations about donations vs. gifts, and in the end, he was very excited about the amount that was raised. He checked his website daily to see if anyone else had contributed and updated us all each time the numbers increased.

Tri Training

The kids are getting excited about their triathlon in a few weeks. This will be Eli's second and Maddux's first. While we didn't do as extensive of a training schedule as last year, the kids swim laps weekly, if not daily, and biking is part of their regular routine. The last two weeks have found the kids at their school after hours a few times; they like to practice their running on "Big Red". Eli has a time in mind for his 1/2 mile run, so he's been trying to beat that. Maddux is just trying to make it the whole way without walking....we're not there yet.

This week we practiced our transitions. Eli remembered everything from last year and set up his station like a pro. Organized and thought-out, I'd have expected nothing less from my first-born. Maddux's was a bit more disheveled (the towel 'base' was even folded up and disorderly) and random; also just as I'd expected. They both had a great time going through the motions of swimming, transition, biking, transition, running. I think they're going to have a blast.

A Day In The Life

It's not all-inclusive, but I did get a few minutes of Ruby doing some of her tummy time part of her physical therapy today. She even looks at the camera a few times! (And yes, I'm aware that Ruby is licking the carpet much of the time; I forgot to put a blanket down after I snapped a few photos. However, I prefer to view it as a way to expose her to different textures. A type of oral-motor therapy, if you will.)
2013 08 Ruby Therapy from Nicole Eliason on Vimeo.

ENT

One of the many things on our check list of 'things to do the first year' with Ruby is visit the Ear, Nose and Throat doctor. While we've not noticed any issues, it did take Ruby three tries to pass her hearing test at birth and the pediatrician has commented how small her ear canals are. We weren't quite sure what to expect going in, but we were hoping for good 'answers'. (Lehr was able to sneak away from work to accompany me to this appointment.)

When the ENT tried to look into Ruby's ears, she wasn't able to see the ear drum because of how small her ear canals are. If that process didn't upset Ruby enough, going down the hall to the 'microscope room' was traumatic, at best. I got the lovely job of holding her arms by her side while an assistant held her head and the ENT used the regular cone-shaped tool to look into her ears with a more magnified viewer. She then used a small 'poker' to gently move a few flecks of wax out of the way. Holy Moly. My girl who rarely fusses gave us a performance. She cried the saddest cry I've ever heard from her and was absolutely terrified. One side down and I could barely walk around the table to subject her to the exam for the other ear.

Upon viewing her ears, the ENT thought they looked fine, but had a tech of sorts perform one more 'test' on Ruby to verify that her ear drums were in good working order and free of fluid. This test allowed me to hold Ruby in my lap while she inserted small ear buds (like the kind you'd use for an iPod) into her ears, one at a time, to check for movement in the ear drum. Both ears checked out great. Ruby started to cry for this test, but ended up passing out from pure exhaustion instead.

She slept almost the entire rest of the day.

For REAL

Ruby has been giving me little 'reflexive' smiles for about a month now. As she's drifting off to sleep she would turn up one, and sometimes both, corners of her mouth and give me an adorable grin. Today she gave me an extra helping of those just after therapy when she was half asleep/half awake. But I know none of those was a 'real' smile out of pure joy.

Fast forward to tonight. Just before Ruby's bath (after the big kids went to bed), Lehr and I were hanging out with her in her room. I had Ruby on my shoulder and she was messing around, holding her neck up and checking things out, like any other 'big girl' would do. At one point she locked eyes with me and was absolutely rocking a steady neck...it was unbelievable. Then she totally, 100% smiled, SMILED, at me. (Lehr was there; he can vouch for me.) It was so awesome and so so so adorable. I don't know how I've gone the last two months without getting to see it. And now that I know she can do it, you know I won't let her go a day without flashing me that toothless grin.

Next time, I'll have a camera.

Rock Star Ruby

Ruby has been doing some physical therapy for four weeks now. I've been very consistent and we almost always do two-a-days, unless we're out of the house for appointments and such. All of her hard work is paying off; this girl is rocking and rolling! Keep in mind that I cannot get her to do any of these things on command, but Ruby picks her head up while on her stomach, moves it from the right side to the left, rolls from stomach to back (both ways), holds her head up when I hold her in a sitting position, and grabs on and holds toys and blankets (and my shirt and my necklaces and my hair). Rock star.

Butterfly Kisses

My newest (and Ruby's first) favorite thing:

When I'm nursing Ruby and she gives my upper arm butterfly kisses with her long lashes. Life is good.

First Day of School

Maddux and Eli got on the big yellow bus this morning, off to another year of school. Even though this is only the second year of 'real' school for Maddux, it seems like she's been going for years. She's a pro at the Meet-n-Greet and the bus and all of the back-to-school prep stuff. Eli is too, but this was his 4th (4th!?!?) August catching the bus.

Both kids love their teachers, and they each have a few friends in their class. Eli's teacher is a male this year; not something you often come across at the elementary level, so he is very excited. Maddux is in a class with her good friend, Davis. We'll see if that's a good thing or not.

Our bus stop grew by two this year, making it very full. The year that Eli started, there were only three kids there!!