Tuesday, February 22, 2011

Black and White

Could it be that Spring is here already..or is this just a teaser with another cold snap right around the corner? I miss my hydrangeas. These were last year's batch. I hope they will still come back since I left the sprinklers on them during a hard freeze in December...more evidence of the preoccupied theme to our present mode.

All the signs of spring are popping out a little early this year. There is this calming early morning sound I can hear outside..some kind of bird I guess but it echos with a hoo hoo type sound. Gives me goose bumps.. reflections of spring.. a very southern spring morning type of sound. I can almost hear my grandmother's screen door creaking open and the smell of bacon in the kitchen. New flowers and the feel of damp dewey grass under your toes. I hope this weather will continue but I dread the coming heat of another Florida summer.

This weekend Sam was able to catch up on some much needed rest while I was fighting off my own cold and general malaise. I think I just let myself get too run down last week and I needed a few down days. Jason was the heavy with the girls, taking them to the beach and spending time in the back yard cutting back the weeds that are threatening to engulf the fence. This week has some specific stresses weighing heavy on us and I am just hoping it all works out.

Sam has some specialist appts coming up as well. Always praying for solutions. I think the biggest one leaning heavy on me today is his weight. I know they told us to throw out our growth charts but Sam is at the same weight he was at back in september and yet we are feeding him all the time. Is it just running right through with little or no absorbtion? Should we change gears on his formulas or is this just par for the course and nothing will change this? I plan to discuss it with his Cardio, Neuro and GI this week and next as our pediatrician just does not seem to have any answers. We need a peds nutritionist who understands mito dysfunction but we there are no nutritionists for peds in this part of the state. I am getting concerned that we may need to look at a trip somewhere else for more advise. I don't want to wait till he has wasted away and requires full time TPN or something worse. I am not sure if that would even help anyway. SO..praying for answers as always.

A friend called late yesterday and invited the girls to come over and have a playdate. It has been quite awhile since we got together with any friends so they were pretty excited. The weather was fabulous! I was worried about whether Sam could handle a few hours outdoors but he amazingly napped and watched everything from the sidelines quiet and contently. He is usually very good that way. He does have his fussy moments but nothing like what the girls would do at this age. We have actually grown to appreciate his fussy periods as it really indicates he is emotionally quite appropriate. I think his biggest issue is communicating the frustations and joys of daily life. His laugh is soo faint and hard to bring to the surface but his smile and laughing eyes say it all.

He has some tools that work well for him in letting us know what he needs, like reaching out when he wants to be touched or picked up. But if he wakes from a nap, he doesn't scream for anyone. He does not move from the spot where he was laid down, so if his toys are out of reach then he just contently lays there staring at the ceiling or shaking his head back and forth to soothe himself. The minute you arrive he goes silly on you with the smiles and reaching out. He really is quite social.

Getting him upright helps to bring out his personality.. but he can only hold the position for a few minutes before he looses his strength and balance. Maybe having the new equipment will help him to not worry about his body and speak out to the world in new ways.

The speech therapist says they have this recordable big button that we could use in his crib to train him to hit it when he wakes up. It would have some saying like "Good Morning Sunshine!" or "Mom, I need you.." With repetition of us hitting it when we find him awake, he should learn to hit it himself and alert us. That would be helpful. In the meantime, he is rather quiet and when he does voice anger it is one irritated grunting sound of EEEEh. The speech therapist was pleased with that actually and says she thinks he has used D, M, N and T as well. We know he has DA DA down as he uses it from time to time when he is feeling vocal.

So the weather was so nice..it was one of those memorable kind of days. I took these with just my cell phone in black and white but I thought they came out nicely and captured some sweet expressions. Black and white is very symbolic for my mindset right now. I have really dark moments full of worry and anxiety mixed with these really bright white moments of hope and appreciation for the little things. I know that in the end the, shall we say "colorful" stuff is not that important. The colorful stuff are the things that used to be paramount in our daily life. I just need to focus on the basics.. sometimes that brings out the clearest picture, where nothing competes for your attention.

Bella has this new funny smile, having lost one of her teeth the other day. Sofie was pouting in the picture above because she felt left out..There is bound to be some kind of frizzle frazzle when three girls try to play together! The other two were on the see saw and Little Miss Sofia Caroline clearly needed to learn that sometimes only two can play certain games. :)

My friend's sons and another buddy from next door had a fun day too.. but it was clearly boys and girls playing in seperate clubs!

I was thankful for a relatively normal day enjoying some friends and nice weather..can't believe I am ready to pull out the shorts already!

Can't get enough of these loving sisters - most of the time! :)

1 comment:

  1. Amanda, I love reading your posts! God is using you, Sam, and the rest of your family in more ways than you will ever know. The black and white photos are so sweet. And I cannot tell you how beautiful Sam is. His eyes are just heart-melting. God gave him beautiful eyes just for communicating with his family!