Thursday, September 26, 2013

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!

video
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 :)

Monday, September 16, 2013

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.

Thursday, September 12, 2013

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?

Tuesday, September 03, 2013

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.

video
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!!!