Posted (Tina) in All Posts on April-11-2008

Life is just a bowl of cherries;
Don’t make it serious;
Life’s too mysterious.
You work, you save, you worry so,
But you can’t take your dough when you go, go, go.
So keep repeating it’s the berries;
The strongest oak must fall.
The sweet things in life
To you were just loaned,
So how can you lose what you’ve never owned?
Life is just a bowl of cherries,
So live and laugh at it all.
by Lew Brown and Ray Henderson, sung by Ethel Merman in Scandals (1931).

Ella and I took our walk around the community earlier today at 8:30am before it got too warm outside. Both of us sported our sunglasses and Ella faced out on the Baby Bjorn. I think she is really enjoying the view. She doesn’t complain much. She just looks around and concentrates on keeping her neck up. I take that as a good sign, considering that she would melt down when even stepping foot outside early on.

The OT appointment was good. She took 20ccs for the OT session. He did make a couple of suggestions this week. First, he asked that we always increase her oxygen when we are giving her the bottle (double her oxygen to 800ml). He noticed how she has to stop sucking on the bottle, just to catch her breath. While she is learning to drink from the bottle, it would be better to give her more air so that she doesn’t have to worry about that part. I definitely agree: I can see her stop and breathe. She literally has to decide whether to take more of the bottle or breathe.

Also, he asked if we had continued feeding with the various foods orally. I explained that we had stopped for a bit because we didn’t want to add too many variables at once (e.g. corn oil) and not know which item might be causing a problem. He asked which times were best for bottle feeding throughout the day. Typically, I think that the 9am and 12pm have the highest occurrence of her doing well.

So, he advised to take one of the other feeding sessions each day and try feeding her orally again. He instructed me to mix rice cereal with the fruit or vegetable to help make it the right texture. As far as technique, he asked that we specifically try to place the spoon in her mouth so the food hits her palette. This stimulates her to move her tongue around. Later on when she has more skill, we can place it in the side of her cheek. After she tries eating a fruit or veggie, even if it is a tiny amount, the OT wants me to feed her formula via the g-tube (he doesn’t want me to try the bottle during that session; eating foods orally is enough work for one session).

I took his advice and used our 6pm feeding to try pears. Just like with the bottle, I left her lying down in her crib (her most comfortable position). It was a success! She still made faces at me and wasn’t too sure what to think. After several attempts, she actually started to open her mouth for me. So far, she likes pears way better than even the sweet potatoes. Plus, I liked that they were less messy! It will be interesting to try this for one feeding session each day to see how she progresses.

Ella did great with her PT exercises today. She sat in her chair for a total of 90 minutes throughout the day! That is a long time for her. She also sat in her swing for a bit. Plus, the walk this morning really makes her use her neck muscles. I think she is getting stronger each day in this regard. We’ll see if there is any marked difference for the PT to notice on Monday.

The cats are getting more comfortable with Ella. She gets excited when they come near her. It is fun to watch her get entertained, like she did tonight with Macy.

Today was the first day this week that Ella has seemed like herself again. She must be feeling better; she was not fussy at all. That is a great relief because I think it means that she is truly okay. Even tonight, her saturations and heart rate look really good. I don’t have a definite explanation for what happened for most of the week and why she seemed “off” clinically, but I think she is back on track.

When the Bun is on track, life is just a bowl of cherries.

Deuteronomy 32:3-4
I will proclaim the name of the LORD.
Oh, praise the greatness of our God!

He is the Rock, his works are perfect,
and all his ways are just.
A faithful God who does no wrong,
upright and just is he.