The Park!

You know, its sad that getting to the park is such a big deal for us. I wish I could take the kids there oftener. But getting there and back really is quite the event! Awhile back we spent an afternoon at the park, had a picnic lunch and meet some friends for a play date. Oh! what fun was had by all!!! Below are some pictures to prove it.

Mic and Bless--its so much easier to be friends when on "neutral ground" where no sharing of one's own things is required. : )

"The boys"
All four kiddos in motion!

Look mom! I LOVE this!

Swinging like Boots!

Another Round

Just a quick petition for your prayer support for us. Starting today we are going to do another two week round of "therapy" with Mic. We are at home and have support from our dear therapist Lorioux via email. To explain briefly, much of her day to day progress depends heavily on our ability to maintain structure and expectations for Mic as well as attending to a host of details such as motivation, positive meal time experience, trust, hunger, textures, calorie counts etc.
If you could imagine her progress shown on a graph the idea is that the line that represents oral consumption keep stair stepping up, up, and up. We have been flat lining it for awhile now--so we are maintaining what we have gained, but we have stopped gaining. Thus the plan is to follow the technique we learned in therapy, and apply another two week calorie cut, along with high energy meals and strong motivation. We hope this will help to pop us out of where we are at and, with the Lord's help, get us moving forward again.

PS
Notice that in my list of meal time issues, vomit is no longer a day to day problem!!! Both vomit and acid reflux have become only occasional issues!!! Thank you, dear Lord!!!

Just Trying...

...To keep breakfast interesting!

This is how things look by the end of each meal...
...not that I am complaining, believe me!!! He eats, by himself...and enjoys it throughly.
What more could I ask for?
...Maybe that he use his silverware?...nah, it'll come in time!

Eating Diary

Here are some recent stats from Mics oral feeding diary:
Monday:
Volume Eaten:
Breakfast: Enriched Eggs 28 grams, Ketchup 1 TB
Lunch: Mortadella 34 grams
Supper: Homemade Tostada 2 grams, Chicken 10 grams, Cheese 18 grams, Apple 16 grams
Snack: Gummy Bear Vitamins

Day's Total Oral Calories 294.5

I don't know if you have ever bothered to weigh out a gram of anything...its not much volume. However, for a child who has had significant struggle transitioning from one flavor or texture to the next, that supper was AMAZING! She also had a bite of lettuce to go with it, which didn't give us any calories, but it did give her a grand total of five DIFFERENT foods that she dealt with in one sitting. ...its goooood!

Why pay for Six Flags???

...when you can spend roughly 70 cents on a public transportation ride. Fly down narrow streets, stop on a dime seconds away from plowing the vehicle ahead, catch air on speed bumps, and barely maintain your fanny on the the seat... Thus was our ride home from the park yesterday in the back of the VW van turned public transportation. What made it fun was that though the ride was a bit crazy our driver wasn't being down right stupid, and everyone else crammed in with us seemed to be in as good as a mood as we were, so instead of the classic swearing and confrontation that often comes with such incidents, there was much good natured laughter as we all tried to keep ourselves and each other from falling off the benches into a heap.

On other matters, today we had another outpatient appointment. Hmmmmm, how can I sum this up simply and quickly...basically we have all the same unanswered questions and no new answers. You know, I get by day by day just taking it one day at a time, trying to let the future--Mic's future, take care of itself. And most of the time that's OK, its the way it is, it is what it is, and really it is how the Lord would recommend that we live. (as opposed to being caught up and destroyed by worry) But when, like today, I sit down and hash it over for an hour with the doctor the reality's and unknowns are pretty hard to ignore and I become thus unsettled. Her growth and lack thereof, oral feeding and lack thereof, inefficient swallow, general development...these are "small" issues when compared to the fact that there are many small children laying on the beds in that hospital losing their battle for life. But none-the-less these are the unknowns that try to consume me...especially on a day like today.

The good...its almost bedtime! Soon we can go to sleep and tomorrow we can get back to "normal".

Big Girl

This is my daughter's proud face. Anytime she creates a work of art that she is proud of, she brings it directly to the fridge. The flower was so special that she didn't even want to take it off for the picture...it belongs on the fridge! She painted macaroni noodles orange, yellow and green and then glued them to make the flower outline. Her auntie helped her with this project. The chicky she made from yellow feathers.
And this picture captures much of the essence of my children. Baby "D" got into a little mischief and is now caught and he knows its. Big sis is trying desperately to fix the problem that she didn't create. She was even actually turning the tape the right direction! But alas, it was to big of a mess for even her capable hands. My daughter is one of the most thoughtful, caring, compassionate and orderly people that I know--she makes me want to be a better person, and I love her for it!

Projects

I have many home improvement aspirations, however there are certain things that are simply impossible to do without help. ...like getting that old wardrobe painted up to use for the kid's clothes.
Sooooo, new years day I took advantage of my SIL's presence as well as my husband's helping hands and we got the job done! I forgot to take the very first before picture, but here's a getting started snapshot.

SIL helping with the backside...its use as a divider in the bedroom made painting all angles necessary.

And the finished product! All the black parts are done with chalkboard paint and can be drawn on with chalk.

Another pending "to-do" has been to change out Mic's tube. It was already looking iffy before our trip, but that little balloon hung on and hung on and made it to seven months, six days before it absolutely definitely HAD to come out. That's the most time we've ever got out of a tube, so I was pleased!!! I wanted to picture journal the steps to a tube change. I thought it would be very interesting for those who have never seen it done...however my little miss was NOT cooperating so the only picture we got that's good enough to post was the preliminary balloon check. But at least you can see what the tube looks like on the inside. The "top" is what you see on her tummy when its in and the "post" and balloon are what go on the inside of her. The balloon inflates and deflates through that little valve where I have the syringe stuck.

Bittersweet

Sometimes I stop and remember...things about Mic's development...and how her little brother compares. Sometimes I stand still and just watch him doing what he does without thought or effort. It is beautiful. And sometimes...it hurts just a little...in a very odd sort of way.
Recently I noticed him crawl over a bump in the floor between the living room and and bathroom. He wanted to get to me and could care less that he had to go over a little step to do it. And I was transported back to the physical therapy days at Salem Rehab. The hours and agony. Wondering if she would ever be able to crawl over an obstical...any obstical, no matter how small. And guess what! She did...eventually...in her own time.
I watch him shoving food in his mouth so mindlessly, effortlessly. I worry he isn't eating enough even though I know that he is. And he doesnt think twice about chewing or swallowing. And I am dying to see her do the same thing.
And I have faith. I really do. I know it will happen...someday...
And I love each of them individually for who they are......but even so, sometimes it hurts...just a little.