Just RK

One week ago yesterday, Braska had her last tube feeding. I thought we were going to have to change that yesterday, as she really wasn’t in the mood to be drinking. I’ve said before, and it’s not overstated, that to make her mouth, tongue, throat, and all the incorporated muscles of lesser known names work together and allow for her to take fluid in and swallow it properly is a lot of work for her. It does not come naturally. It is not a reflex. She does not “just get it” now, she is working hard to get it. Very hard. At times, when she’s holding a mouthful of milk, just sitting there, waiting for me to take the sippy cup away, her eyes will go from side to side, her neck twitches and moves, her jaw slides from side to side or clenches a bit. It’s all like a bit of quiet chaos as she tries to organize everything in order to get that swallow done right, without choking, and allow more drink to come in. It’s a very slow process. Don’t think that she’s just up and guzzling do...

Hot Rod. Padre. Pa Beagle. Dad is what I call him most often.  And today he qualifies for the senior discount at the YMCA.  Congratulations! So here’s a little look back at when it was just us, and Mom, of course. But someone had to take the pictures.  From October 73 to Easter 75, when he was a preacher boy in his mid-twenties. Good times. And from June 2011… with Mom, Julia, and the girls.  Happy birthday, Dad.  Hope you have a super great day! And yes, you may link this on FB if you’d like to share your young handsome self with your friends.  (Happy birthday to Marci, too.  Wherever you are.  We still miss you.)

The overstuffed recliner is between their little beds.  When I sit there, I can reach each of them as they lay in their beds, holding one of each of their little hands as we say their prayers each night.  The room is only 9 feet wide. Tonight we prayed for their sweet dreams, restful sleep, thanking God for a good day, all four of us healthy.  We thanked God for our friends and that our sweet friend Jamee had a good day after a few tough ones.  We prayed for my friend Jennifer far away.  We asked for extra doses of comfort and peace of heart for our dear, precious friends who will walk painfully through the next 9 days, though all their days are harder without their prettiest little one.  We asked for lots of extra angels to be sent to those little ones who are mistreated or alone in places without mommies and daddies to love them.  We never forget these precious ones.  We prayed for the “tummy babies” whose mommies are scared of what the doctor...

I used to be in bed by 10 or 10:30 pm regularly.  And I was still feeling like it was later than it should have been. Now it’s been midnight or later for a few weeks, and it’s just wearing me out.  So why can I know that, think about it often, and still it’s not changing?  That kind of thing frustrates me. So instead of ranting more about it, I’ll go to bed. There’s a novel idea. Just for kicks… when do YOU usually go to bed?

If you’re one of the few who check in here but not over on Braska’s blog , be sure to pop over there and read the last few posts about our big, exciting changes.  She’s rocking a cup. Sporting a gulp.  And I’m really proud of her.

This girl is amazing. This girl is tolerating a very different way of doing things and she’s smiling through it. (Most of the time…) This girl has to work harder at taking a drink of milk than you  or I do during a one-hour workout.  But…This girl is doing it. And well.     This girl adores her big sister.  This girl can do just about everything better and faster than her big sister. But this girl cheers her big sister on consistently, celebrating every little thing like it’s a major event.     These little girls make me smile. These little girls make me crazy sometimes. These little girls frustrate me to no end on some days. But these little girls are blessings. Just as they are. Lord, give me the wisdom to raise these little girls in the way you know is best.

I referenced the tiny-ness of Braska in  this post (And if you haven’t seen it, you MUST !  Big news in our world!!)  So I decided to look back and see just how my girls measure up.  The Normie and the Downsie, not in comparison to each other, though that’s often fun, but according to the “official” growth charts. (ETA: In case you’re new…Yes, we affectionately refer to the girls in that way, as stated above. Yes, we know it might not be everyone’s preference. They are derived of love and pride in both of them, combined with the dry wit that lives in our house, and originating from self-advocates with DS who are proud to own the “Downsie” term for themselves and their close friends.) Braska was 7 lb 0 oz at birth.  At 1 year, she was 15 lbs. At 2 years, she was 19 lbs. At 3 years she was 22 lbs. At 4 years, she was 24 lbs. As of today, at 3 months shy of 5, she is 25 lbs 10 oz  and 36.75 inches tall. (That weight is also a BIG deal!) ...