Wednesday, April 02, 2014

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.

Saturday, March 29, 2014

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.

Friday, March 21, 2014

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...

Monday, March 17, 2014

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!

Friday, March 14, 2014

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.

Wednesday, March 12, 2014

MORE! MORE!

video
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!!

Tuesday, March 11, 2014

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.

Monday, March 10, 2014

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.

Friday, March 07, 2014

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!

Tuesday, March 04, 2014

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.