One week is in the books

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 down her fluids. To get about 4 ounces in her takes about 10 to 15 minutes of constant work. She gets a break and then it is time to try again, with either more fluids or something to eat. We have to do food/drink in staggered amounts because she doesn’t hold very much at one time.

Because of that, the non-use of the tube has definitely created more work for me, and for M when he’s in the feeding role. Much more time is devoted to getting her food/drink in orally than when we can rely on the tube. But we are sticking with it, and she hasn’t fought us too hard yet. I think we can get there, even if it is slowly.

We’re already in to this process almost 5 years. Now we’ve got one week toward the next chapter… I’ll take that.

Happy Birthday, Dad!

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.)

Within reach

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 doctors have told them and for those mommies to be held and loved and supported and given wise counsel. 

We don’t always use those kinds of words.  We say it as the girls understand and join in.  They remember people we’ve talked about during the day, or friends that we’ve been praying for lately.  They remind me even mid-prayer of people to remember and mention. 

Tonight, Braska, who had gone without a nap today and was very very tired, fell asleep holding my hand during the prayers. Kinlee was on the other side holding my right hand, moving my thumb along the back of her hand when I would pause from the gentle motion that she likes so much. 

I sat there for a while longer than I normally do, listening to Kinlee talk to herself, sing a few little songs, and watching Braska sleep.  My girls are within reach.  I do not take for granted that they are right here with me, well cared for, comfortable in their home and in their parents’ love.  It is nothing to take lightly.    Every moment is a blessing.

And I thought to myself, how thankful I am, that for those tonight who desperately wish their precious ones, either young or old, were within reach, there is a God who is ALWAYS within reach. He is closer than the air around us. Available at your quietest whisper or loudest cry.  Just reach out and hold His hand.

New bedtime please

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?

Love the gulp

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…

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.

My little muffins. Both of them.

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!)

That ranks her far from even hitting the “typical” chart for weight.  5th percentile would be about 33 lbs.  50th percentile would be 40 lbs.  Her height also falls far below the “typical” chart.  5th percentile would be 39.5 inches, 50th percentile would be about 42.5 inches.

On the DS chart, Braska currently ranks right at the 8th percentile for weight and at 25th percentile for height.  She’s small by pretty much any standards!

Kinlee was 7 lb 6 oz at birth.
At 1 year, she was just over 18 lbs.  She hit 20 lbs about 16 months, as I remember.
At 2 years, she was about 23 lbs.
As of today, at just over 2 1/2, she is 25 lbs 6 oz, about 35.5 inches tall. 

That ranks her at about 10th percentile for weight and about 20th for height.  And they don’t come any healthier than this chick.

So for all the discussions I’ve had lately with people worrying over their kids’ weight gain or the “all important” growth chart rankings (they are NOT that important, in my opinion), celebrate the health and progress of your kiddo.  And give them a break!

Great things come in small packages!!!

My pretty princess flower girl

SO much happening lately. A weekend of family reunion for my side of the family, followed by the next weekend of in-laws a-plenty for M's brother's wedding. That was this past Saturday. Tons of pics and stories and I'm sure I'll forget something I want to remember. I'm glad it all went pretty well, and I'm glad it's over. I'm worn out, and I'm ready for some simple family-of-four time at home. Not that I don't love our families, because we are pretty blessed as that goes. But wow, that was alot of time in a short little span. So now it's time to decompress!

I'm working on getting all the photos/videos uploaded to share with all you lovely family members. Thanks for being patient. They'll be ready soon. In the meantime, here's some of the cutest moments of the day Saturday in video form. (If you have trouble seeing the video, refresh the blog page, and if it still won't work for you, let me know, please! Email is in the margin over to the right.)

Make a video - it's fun, easy and free!
www.onetruemedia.com

(What you can't really hear well at the beginning is Kinlee saying loudly and proudly... "We're doing it! We're doing it!" And the crowd loved it. It'll be a classic family story for years to come I'm sure.)

Discipline. Down syndrome or not.

One of the forums I frequent (or in-frequent?) is Life’s Journey with Down Syndrome.  It’s a small, private board, very close knit, and many of us have met personally after getting to know each other online.  The group there talks about many things, and discussions are always interesting but respectful, which I appreciate a great deal. (If you’re interested in joining, fill out the registration, or drop me a line and I can put in a good word for ya with the “powers that be.” )

I don’t get to go over there and join the discussions nearly as often as I’d like, but today I popped in.  There was a thread about one of the topics I’m most passionate about… discipline/proper behavior, etc.  I won’t share the others’ comments since it is private, but since I wrote out a bit about my thoughts, I thought I’d share them here too so see if there was more discussion or thoughts that YOU might want to throw in…

(Someone had asked about if the members disciplined their children with DS…the same as their other kids, differently, less than, or not at all.  And discussion ensued about how each of us feels about the discipline/behavior topic.  Then a comment was made about how one member feels strongly about behavior and will at times avoid spending time with friends’ families/kids who are not well behaved or exhibit unacceptable behaviors.)

Part of my (edited for privacy) response is below… feel free to comment, politely, of course. 

I could go on for days about this topic! What *** said above is so true for me... I'm famous, for better or for worse, for avoiding kids that don't act in a way that I find acceptable. I have several friends who I would spend alot more time with but their kids either just really annoy me (sorry, being brutally honest) or are flat-out inappropriate to the extent that I don't want my girls to see that behavior. And often, it's the interaction between parent and child that bothers me more than just the behavior of the child. The unwillingness of a parent to be firm and respond beyond a half-hearted "Oh Billy, I wish you wouldn't do that," is really hard to watch. I always think, "If you WISH they wouldn't do it, make sure they don't. BE the parent!"

I'm a stickler for behavior. If I've said no, I mean it and it will be enforced pronto if it's not obeyed. Period. Do I mess up and sometimes get tired? Of course. But thankfully, my husband and I are on the same page about most of this stuff [so pleased!] so he is always consistent with them as well. There are acceptable and unacceptable behaviors for both my girls, and unacceptable behaviors will meet a quick consequence every time.

Granted, some things are dealt with differently for each of them, for both personality and developmental reasons. But the rules are the same. Braska is very easy. She has gained a bit more of an attitude lately, but it's still generally easily addressed, and though she might pout a bit, she minds pretty well. Kinlee is VERY strong willed and too smart and manipulative for her age, but she is expected to behave in a proper manner, regardless of the fact that she's "only 2".

This goes as far as to speak politely when spoken to, to say please and thank you, no yelling in the house, no pushing, hitting, etc. The girls will repeat the mantra when I ask them... "When I give you an instruction, what do you do?" "Listen and obey," they chime. [Some people] think we're too strict and that we're not allowing them to have all the fun they apparently should be having, but we make sure they get plenty of "fun" and plenty of playtime to be silly girls, with the correlation to appropriateness of time and environment.

Though Kinlee can be very tough, she isn't [quite as] brazen anymore. We have worked hard to teach what is acceptable and stick with it. If a toy is treated in a manner that isn't appropriate, thrown, jumped on, etc, a firm verbal instruction might be given (Don't throw the block.) but if it is not immediately heeded, the physical will be there in seconds. The toy is removed, the child is removed from the area, the instruction is repeated clearly, at the very least. It doesn't have to be a big scene, loud or emotional, just clear information to the child that I mean what I say. What works for one might not work for all, but consistency works better than it's alternative every time.

Suffice it to say that behavior, proper and respectful behavior, is hugely important to us. I'd much rather be thought of as too strict and have well behaved kids who can mind themselves in most any adult or child situation than be seen as the easy-going mom and have kids that others are avoiding. It's all a balance, for sure, and I pray every day that I'm finding the right spot.

What’s your feeling about discipline and special needs/Down syndrome?  Or is the disability a non-issue?

New friends nearby

A week ago, on Sunday, after working the afternoon shift, I met up with a new friend.  I had a rough and weird day at work, and with the crazy heat that has been hanging around here, I was not at my best social self.  The girls also showed some of their less attractive features here and there.  But regardless, it was a nice visit with some very lovely new friends.  I’m so looking forward to the next time.

This has been the strangest week, really very odd. I’ve worked more than I’d prefer in the last few days. Since I’m worn out and clearly not having any great wit tonight, I’ll refrain from giving my version of last Sunday evening as I’d thought I’d do.

When the words of another say what should be said even more eloquently, let them alone.  Right?

Please visit Trial Run for the great post that shares of our playdate.  And the pictures… you will not be disappointed with the cuteness quotient!  It was hot, but there was water.