Therapy Update

Ruby is still rocking through her therapies....so many new things every week! Speech Therapy is going well; she is still eating all types of textures and temperatures with no problems, and the therapist was impressed with small improvements she's made in her eating 'techniques'. She is babbling a lot more now too: "b" and "bl" sounds. One of her therapists said to start working on her pincer grab with finger foods. When we put them on her tray, she uses her third and fourth fingers to rake them up and get them into her mouth. I've tried many different strategies, but she hasn't responded successfully to any of them. Our least favorite was taping her hand/fingers. She didn't mind it at all, but she also didn't have any success. We'll keep trying things....

Physical Therapy is moving along well too. Ruby is not crawling or army crawling, but she is progressing with so many other things. When she's on her stomach, I barely have to prompt her at her hips to get her to pull her knees in so that she's on all-fours. And she will hang out on hands and knees a lot longer, even rocking back and forth. From that position she will also push back into a sitting position all on her own. Ruby's protective response is immproving too; from a kneeling position, she will catch herself in all fours when she 'falls' forward most of the time. Finally, she sits on raised surface (bench or upside down bin) well and is working on pulling standing from that surface.

Dishwasher

A few weeks ago our dishwasher started giving us some issues, so we've been handwashing everything. As one might expect, dishes pile up QUICKLY with three kids, so I try to wash things right away, after each meal. It doesn't take long, but during spring break Maddux commented how she wanted me to not wash the dishes. 

A few days later, Maddux pulled out her step stool and asked if she could help wash the dishes. Of course I said 'yes'! I showed her the basics and she got started on the breakfast bowls right away. I picked up other things around the kitchen while she was washing, checking in with her every few minutes.

At one point I told her she didn't have to wash all of them if she didn't want to. She told me, "No, I'm going to wash them all because I don't want you to do it, Mommy!" Love. That. Girl.

World Down Syndrome Day

Today was our first World Down Syndrome Day (3/21) and we wore big, mismatched socks in support. (The goal was to bring attention to the socks so people would ask about them. Then we could tell them why we were wearing them and start a conversation, hopefully opening some eyes to the 'reality' of Down syndrome.) I briefly explained the reason for 3/21 to the kids a few days beforehand, touching on chromosomes and the numbers and the fact that Ruby has one more than us. I was hoping they'd be excited and want to participate; they totally wore mismatched socks 'for Ruby'. I was very impressed when they got home and we talked about the special day; Eli remembered some of the details very well. He even wore socks to baseball practice that didn't match.

Funny side story: when the girls and I were outside after school, I was still wearing my socks. Maddux remarked that my socks weren't really crazy because they were both black and white (one was striped and one was dots). I told her, "You be your crazy and I'll be mine." Without missing a beat, Maddux said, "Your crazy is plain." Called out by the queen...

Hard Work

I probably mention Ruby's hard work in 5 out of every 4 blogs....in case it's not obvious, we're kind of impressed by the work this girl puts in! Ruby's latest trick is pushing herself into a sitting position. She's been sitting on her own since before Christmas...somewhere in January she became a total pro at it, holding herself in an upright sitting position for at least three or four minutes at a time.

In the midst of working on her four-point hold (aka crawling position), we've shown her how to get into and out of hands-and-knees. Into: she is on her stomach and she pushes up with her arms (think 'up dog'), then I give her a little support at her hips and she pulls her knees under her. Out of: she's in hands-and-knees and I gently push back on one hip and help her walk her hands back into a seated position.

Over the weekend she was working hard in the bath one night. I had her on her stomach in shallow water (the girl likes to 'swim'!) and she kept trying to anchor her knees and push back to sit up. So the next day when I was working with her on her elevated four-point (hands up on a thick book or other taller than the ground surface), she kept pushing herself to the side to sit without any prompt from me. Fast forward a few hours when all I had to do was get her into hands-and-knees and she'd push back immediately. *By the way, when I aide her hips up, she barely needs my assist. That girl's abs are STRONG!

I got a quick video; it shows the natural progression of us working on it and then her doing it on her own. However, it was shot in reverse. The working on it part came later in the session when she was exhausted. She started out with success and then started to fatigue (which is when I started to assist her). This girl is a rockstar!

Pressure

Since the beginning of time, or at least time as far as Eli's concerned, we've seen the struggle with anger. He is a very happy kid; people are always commenting on his ever-present smile. But if he's overly tired or frustrated, he can lash out. We have definitely seen him come a long way in controlling his anger behavior, but he still has his moments. (Don't we all?!)

Unfortunately, this season we've seen this manifest on the baseball field. When Eli gets to his 'point', he is not listening, argumentative over EVERYthing, and very much in the mindset of finger-pointing. This is Eli's last season in the pinto baseball league, meaning he is the 'big kid' on the team. We talked to him in great length about how cool an opportunity it is, to be the example for the team. Normally, he's a great sportsman and doesn't get down on himself or stress out too much about the game. However, we've had two games where that wasn't the case. The first time wasn't too bad; he missed a few balls and got a little upset, but turned it around. The second time, I almost pulled him from the game. He missed a few balls at first base, and then got called out at second on a close play. He came back to the dugout very frustrated and mouthed off to me about 'the ump saw it wrong'. (This is a BIG point of contention for Lehr and I as we've seen too many boys in this league 'blame' the coaches or umps. Not okay.) When Eli is in this state, there really is no reasoning with him, but I very calmly and very sternly let him know that his reaction was out of line and he needed to turn it around. (We talk all of the time about how his 'job' is to play and have fun and the ump's job is to make the calls. Right or wrong, the ump is RIGHT.)

Eli calmed himself down and the game continued, but Eli's example for the team was poor at best. No, he didn't call out the ump in a public way. No, he didn't come back to the dugout and yell or kick or throw things. But his attitude of expecting nothing but perfect plays from himself was starting to happen too often for our taste. And while his reaction in that game wasn't overboard, we don't want to ignore something that could escalate. I love that he takes his performance seriously, and I love that he strives to be the best he can be. Our disagreement comes in the purpose of mistakes. I try to remind him that 'sometimes you win and the other times you learn'...he doesn't like that too much.

I had a loooong talk with Eli on the way home. (It was just the two of us in the car.) He was receptive to everything I was saying because he'd totally calmed down by that point. I reminded him that baseball was a game that was intended to be fun. At the end of it, I told him that I would be talking to Dad more about it, but there would not be anymore baseball (practices or games) if we saw anything close to that on the field again. Lehr had the AWESOME idea the next morning to have Eli do a little research as part of his consequence. I don't remember all of the details, but Eli had to dig around on a few baseball sites to find out the stats on some of his favorite players (those that are seen as very successful). Then he needed to define a batting average and what an ump's job is. It was followed up by a big talk with Lehr about the 'assignment' and about what happened. We have not seen any issues like that again this season. Score one for Daddy.

MORE! MORE!

So we've been working with Ruby on a few signs, and then started focusing just on 'more' about a week ago. I didn't expect much since both other kids didn't start till closer to a year, with just as much pre-work from mom and dad. Last night Maddux and I were eating dinner outside with Ruby when, as I cued Ruby to sign 'more' to receive a puff, she did!! And to make sure it wasn't a fluke, I prompted again, and again, and again...all with success! I didn't want to disrupt the moment too much by running to get the camera, so I just grabbed a few examples with my phone while feeding her with the other hand. Amazing!!

Airborn

Eli has had four games so far; one last weekend and then three days in a row this weekend. Each one has been on a beautiful spring-weather day....we love it!

I've been shooting as much as I can during the games. I was especially excited for our last one because Eli was playing against his BFF's brother. So when said brother got up to the plate in the first inning, I fixed my lens on his batting stance and started shooting him. Wouldn't you know it, on the second swing he hit a monster of a high line drive to the far side of second base. I turned my head just in time to see Eli jump from his spot between 1st and 2nd all of the way over to the ball and catch it midair for the out. He seriously was parallel to the ground!

Even after the game, coaches and parents from both teams were coming up to Eli to compliment him on the amazing catch he'd made. Eli earned the honor of 'team captain' for that catch; he gets to wear the team sweatband until the next game.

The photographer in me wished so much that I could have gotten that shot, but I think Eli will remember that catch for a while, even without the picture.

A Look Inside

For over a year now, I've been encouraging the kids to journal. With me, without me....whatever. It started as an attempt to help Eli work through his anger/frustrating when it becomes too much for him. Not much success with him, but Maddux does a great job of writing Lehr or I a note or letter in the book and returning it quickly so that we can do the same for her.

About a month ago a friend turned me onto a journal for moms and daughters that gave some prompts and other ideas to write about, to allow for some conversations that might be skipped otherwise. One of the first pages for us to journal on was a simple list. Maddux took about three 'tries' to complete this list (hence the different pen colors), but she returned it completed to me this weekend. (Since this page is not one she would mind me sharing, I took a picture of it because I never want to forget it.)

Oh how I love it. I love that she wrote "God" for what she believed. I love that she wrote 'bacen', and 'penup buder'. I love (and am not surprised) that her favorite word is 'happy'. I love that she wrote "Ruby" for what she loved. And I love (and marvel) that she wrote down the I am 'nice'. So many days, more days than not, I feel like all I do is squash who Maddux is with my rules and manners and expectations. So many days I do not feel like my dealings with her are 'nice'. I am so so so grateful that she sees past that and chooses not to focus on my imperfections.

Speech! Speech!

Sometime before Christmas I asked the Babies Can't Wait coordinator to assist us in scheduling a session for Ruby with the Speech Therapist. Scheduling issues and snow storms got in the way, but we were finally able to meet with her last week.

Of course I've been reading up on things to do with Ruby, and we've been working on some oral 'exercises' before feeding to help stimulate her muscles so they can perform at their best. But I was looking forward to having a person come see what Ruby does and tell me what we're doing right and wrong.

Ruby tolerated the first session pretty well. The ST asked if we'd been working on signs and I told her we had: mostly "more" and "please". No response from Ruby yet, but when I was demonstrating how I sign with Ruby, she totally nodded. Never before have I seen that (and the therapist is my witness that Ruby was very intentional!). I asked her, "Ruby, do you want more?", and the girl looked at me and slowly nodded 'yes'. Crazy!

The second session was a little harder, as we asked Ruby to do more in the way of working for the food. We've been placing puffs and cut up fruit towards the back and side of her mouth; this is to get her tongue more involved in moving the food around in her mouth. (Never a resting moment for Ruby!)

Unfortunately for Ruby, we had another session the day right after her second speech therapy with Babies Can't Wait. When I ran into scheduling issues originally, I tried to line something up with a private therapist and local mom, and the two sessions just ended up next to each other on the calendar. This session was more on communication and OT, whereas the Babies Can't Wait sessions have been more about feeding and strengthening the mouth. Both VERY important and necessary.

During this session, Ruby fought back and was not so happy. I don't blame her though; it was a LOT of work, all at once. We worked more on signing ('more'), different feeding techniques, and then we worked on her pincer grab. That is something I haven't focused on at all, but the therapist said that Ruby is old enough now to not grab her puffs with her last three fingers; she should be using her first two now. That made Ruby very upset. We then did some play therapy, and when the therapist left, Ruby slept for almost two hours. Tired girl!

Lunch Dates

Ruby and I got to have lunch with the kids on Monday. We haven't been able to make it to the school for lunch since the holidays; between snow days and doctors' appointments and therapy, we've been busy! I loved sitting between them at the lunch table. They were both so excited and surprised to see Ruby and I.....it was a good reminder that I need to be more intentional with lunch dates. Mondays are the best time because both kids are in Target that day and their lunchtimes overlap. (Other days their lunchtimes are more than an hour apart!)

Fast forward to this evening. The kids and Lehr were chatting during a card game. Maddux asked Lehr when he could come to school for lunch...he asked if lots of other mommies and daddies came. She said 'yes' and then Eli interjected that I'd been there once this week. They talked for a minute about how Mommy used to come to Eli's lunch with Maddux a long time ago. Maddux told Lehr how I'd timed my entry perfectly so that I was walking out of the office just as her class walked into the lunchroom (instead of me getting there early and waiting on the front bench). Lehr asked if they liked it when I came. They both said 'yes', and then Eli added, "Every day when I go to lunch I hope that I'll see Mommy sitting on that bench."

Melt. My. Heart.

It was a good reminder that I need to slow down and enjoy these moments with my little man. I get so focused on my worry that Eli is growing up so quickly that sometime I forget to notice all of the areas that he's reminding me how 'little' he still is.

Spring Fever

We are back in the game!!

Eli opted to return to baseball this season. After our parent-imposed fall away from sports, Eli returned to his first love. And even though he talked about football, or maybe even soccer, after the very first practice, he was back to hitting off of the tee, setting up baseball diamonds, and begging me to throw him pop ups, grounders and 'hard' line drives. That boy loves the game.

I am very excited to be back at the ball park too. Eli is so focused and so 'into' the game; it's an absolute joy to watch him play. And this is his final season in this league, so he is definitely the big kid on the team. Even if not too much in size, definitely in age. I hope he finds his way into a leadership role, from an encouraging standpoint.

As expected, I am back behind the camera. This season Lehr is pitching during the games, so Ruby will end up riding on my back as I shoot. So far she doesn't mind.

Look, Ma...No Hands!

Well, actually both hands. But who's counting!

We've been offering Ruby puffs on her tray since almost the first time she ate solids, about three months ago. She quickly figured out that she could use her hands to affect those puffs, and after some practice, she even got them into her mouth! We then moved onto all types of finger food, with varying degrees of success and mess.

Until recently, the floor to mouth ratio has been pretty even, but as of last week, this girl is a pro. Suddenly I noticed that after meals I only found a few random pieces of finger food in her chair or on the floor instead of the dozens I was used to. Team Ruby, rockin' again....

Crawling Track

Ruby has added a new piece of equipment to her ever-changing home gym. She now practices crawling on what we are referring to as a 'crawling track'. Our therapist had a client years ago that constructed several pieces of 'track' to go around a large family bed. Said pieces are not broken apart and she lends them out to clients as needed. The track is basically just some wood nailed together, covered in a a light padding and vinyl. We prop one side up so that she can 'crawl' downhill, allowing gravity to help, or we keep it flat; it works both ways :)

Let's be clear here: Ruby is NOT yet crawling. She's not even scooting, but we all know she's a quick study and it will only be a matter of time. Until then, she'll practice both skills (with much assistance from us) on her track. Go, Ruby, GO!

Dancer

Maddux opted to take a gymnastics class this spring instead of doing a team sport. I was able to find a class that offered gymnastics AND ballet/hip-hop, which she's come to really enjoy. Every other week she wears ballet shoes and practices her plies and sautes. On the other week(s), she dons sneakers and does some basic hip hop style moves. Every week she does gymnastics for the second half of class.

This girl is a natural when it comes to basic gymnastics: her upper body strength is great and she can balance fairly well on the beam. (This is a bit surprising since she walks into walls and will trip over her own feet sometimes. It just goes to show that her focus is necessary to stay injury-free.)

No pictures or video yet; the glass between me and the class is not easy to shoot through.

Stolen Moments

As usually happens when a new baby enters the house, things around here have been busy to say the least. And as stay-and-attempt-to-work-at-home mommy, my schedule is probably most affected. Gone have been the days of lounging around with the older kids, playing games or reading books or picking up for a picnic at the park at a moments notice. Not that any of us mind; we have been more than happy to make this shift in the name of Ruby. But I have missed reading with the kids before bed, running out for quick little 'dates', and playing outside after school with them like we used to. I think I'm still doing a pretty good job keeping them on track with their homework and making sure boo-boos are kissed and 'I love you' is said. And they are getting a lot of great time with Daddy, not to mention the serious bonding time with Ruby I'm racking up 4-5 times each day while she nurses, so no one is really 'lacking'. But I am missing my one on one, my intentional time, my time to just 'be' with Eli and Maddux.

This week has given us a turn-around in that department. Even though we had two baseball practices and a gymnastics class, this week has been a very intentional family week, specifically regarding the two older kids and me. I had a dinner with just me and the three kids, focusing on the oldest two. I started a chapter book with them at bed, and read (and snuggled!!) three nights out of four. I had a day off of camp and got up early to wake them both, snuggling in their beds for a few minutes before they got up, and then having breakfast together and walking them up to the bus. One day Maddux and I even got to flip through a girls' magazine together. She saw a page on how to do some fancy hairstyles, so we took 20 minutes and tried them out on her hair. Bam! Moments into memories.

And finally I got to do a full PT session AND throw the baseball with Eli on two separate days. Big time! I love playing catch and throwing practice pop-ups and grounder and line drives to my boy.  I remember when he was four and I'd play catch with him...I would always think about the time in the future when I could throw without fear of hitting him or without worry he wouldn't catch it. Those days are here and I lam happy, happy, happy.

Doctor, Doctor

It's been one of those weeks. One full of car seats in and out of the back seat, into this parking garage for this doctor, onto that massive parking lot for that doctor, finally in that waiting room for that doctor.....

This is not a complaint: only one appointment was due to Ruby not feeling well. The others were check-ups. But even if they were all sick visits, we are so blessed to live in Atlanta where we can access this doctor and that doctor (and the other doctor, too).

The check-ups this week for Ruby were the endocrinologist and the ENT. At her 6-month check-up, the doctor ordered another CBC for Ruby and included a thyroid check. The levels came back slightly high (possible indicator of hypothyroid issues), so she recommended we establish an endocrinologist and discuss a plan. The doc was great, as expected, and was not concerned with what the test showed. He did order another test to get more information, and said he'd like to run the same one again in 3-6 months so that we can check the consistencies. I was SO impressed with that doctor and his staff. Every single person in the office was so kind, so gentle and SO kid-friendly. It was like being at Disney World; no one broke character!

Ruby's appointment today was with the ENT. She's been once before, but it was six months ago and it was not too fun. Today was to be some of the same: clean her ears, use a microscope to see the ear drum, do a hearing test with ear drum moment measurements. The doctor was amazing and gentle with Ruby. So much so that she didn't even cry during the cleaning and microscope! The hearing test was not as 'positive' as we'd like, but the doctor wasn't too taken aback by it; he said many factors could have been affecting the outcome. He was able to get a good look at her ear drums during the exam and they looked very healthy to him. He will see her again in three months to compare as well.

My girl was such a trooper. We were at that office from 10AM until just before 1PM. Through her morning nap and second nursing of the day (neither of which she got at the office). She dozed on my shoulder for about five minutes between the hearing test and our final visit with the ENT, but even when she woke as he entered the room, she didn't fuss. Ruby rocks!

The GREAT news he gave us is that we are cleared to get her in the pool. We have avoided any submersion so far in fear of ear infections. He said ear infections from fluid caused by sickness is what they worry about at this age much more than water trapped from a bath or swimming. Game on!!

Random Notes of Kindness

I find the most awesome, the most creatively spelled, and the most random notes all around the house. Sometimes they are to me, sometimes they are to Lehr, sometimes they are to Eli or Ruby, and sometimes they just are....

This week I found one of those notes in Maddux's room. As always, the spelling was perfection, and as always, Maddux's heart shone right through the words:

That Girl

How many posts do I have with that title? If I had to guess, I'd say a dozen or more (per year)...

Maddux and I had a quiet afternoon with Ruby today; after school Eli stayed for a cardio program. While we talked about the day's events, I asked if she made good choices? She assured me she did, and we went through what that meant. One of my questions to her was, "Did you have your listening ears on?"

In true Maddux fashion, her answer was an emphatic, "Yes!" Then she followed up with, "I did not have my not listening ears on...." I laughed and asked her if she left those at home. She assured me they were saved for bedtime.

Snow Days

What a crazy week. We got a few inches of snow on Tuesday. It immediately turned to ice. The interstate froze over. Six million people were in their cars on their way to pick up kids and get home. The city stopped. To a grinding halt.
It took Lehr eleven hours to get home Tuesday night. That was a bit stressful for this mama, but once he got here, the rest of the week was a great little gift. Red noses, snow ball fights, sledding...it was a rare thing in Atlanta, but we welcomed it.

The kids were dismissed at noon on Tuesday, and it was already coming down in buckets. By the time we got to the backyard, you barely needed to swipe the railing before it recovered and fill back up with snow from the sky. All three kids and I played for a few minutes outside, and then they wanted to come in and do your homework before they went to play outside again. Yes, I just said that and I meant it: they want to do their homework. I said nothing to prompt them in that way at all. Eli kept saying "This is awesome!", as he'd look up from his math work. The boy was totally excited

After I put Ruby down for a nap, Eli, Maddux and I went back outside to play. We threw snowballs, slid on the front hill, and made snow angels. We met up with the neighbor kids had a blast for a good hour. Just before I went inside to get Ruby, Maddux had to go to the bathroom. She hesitated, switching her weight back-and-forth before finally saying "Okay, I have to go. You guys stop the fun for now. Wait till I get back. Can you guys pause the fun now?"
Love that girl.

I fed the kids soup or pasta or something warm that night and tucked them into fuzzy beds before coming downstairs to wait the long night before Lehr arrived home. The next morning there was no school, no boot camp, no work....

We spent the morning eating a lazy breakfast before suiting up to go outside. The older kids and I went to another street to sled with friends from the neighborhood. Watching Eli and Maddux try to walk up the icy hill was entertainment enough for me!
After lunch, we returned outside to sled some more. The kids' best buddies came over and we played all afternoon. Even Ruby came out in her snowsuit to check out the action.

The following two days found the kids out of school still, but by Friday afternoon, the snow had melted. No one was complaining too much; the amount of 'snow time' that was realized in less than three days was enough to last a year.

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.

MLK Day

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.

Awesome.

Exponential

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!

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.

Toys!

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. :)


Z-vib
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.

Hurt

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...