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.

Joel Snyder on April 11th, 2008 at 10:21 pm #

Ella, I just talked on the phone with your Mom and it seems you were sleeping in your Dads arms. Keep up the great progress with the food and PT. You look great and I am glad to hear that yhou are feeling better. I am going to the house in Lone Tree tomorrow and will check on you then. Love,Grandpa!!!!!!!!!!!!!

The Laz Fam on April 11th, 2008 at 11:26 pm #

Tina, does your tee shirt say “Got Faith?” Love it!
Great news all around ~ keep up the good work, Ella Bun!
Love ~ KTJB

The Dirrim family on April 12th, 2008 at 4:51 am #

How grest our God is! Ella’s progress is amazing. I am so excited that you all are headed back to Denver. That is my home town too and I know what it is like to miss the moutains and dry summers. I am still not used to the Atlanta summers even after 11 years.
Our family will continue to pray for steady progress and an uneventful move.
Love- The Dirrim family

LoriAnn on April 12th, 2008 at 10:37 am #

You look great, Ella! I love the pictures of the cat and her; it looks like she is reaching out for it (another milestone!). Sounds like your OT really knows his stuff. We have an OT that works with our Autistic son and she always gives us great suggestions. I agree with the pears over sweet potatoes; less mess is always good. With her doing so great and getting stronger and stronger each day, I think your worries of travelling alone with her when you go back home will be only that: worries. I think she is going to surprise you. I don’t know how long she will have to have the oxygen thing, but I bet that will be no problem at all. God’s grace to you and your little family this weekend. BTW, it is funny to read that you have to get out before it gets too warm! Wish we had that problem here. lol Today should be 70, but that won’t be until after noon. Enjoy while you can. My sister lives in Colorado Springs and they had snow for two days last week. Summer is just around the corner, though, so you and Bun will be able to go for lots of walks when you get home too. Sounds like Grandpa will be ready for some of those too. The Kuhn Family: Tom, LoriAnn, Tyler, Zackary, Seth and Jonny

Barbara Mullins on April 12th, 2008 at 3:32 pm #

Well all this talk about going back to Denver seems to be a real motivating factor for your girl! All these baby steps – she’s almost running! Keep up the good work Ella! And thanks God for your goodness to this precious family!

the Lizotte family on April 12th, 2008 at 5:08 pm #

Ms. Ella looks fantastic. She is really making big steps forward in preparation to her big trip home.

Chambers Family on April 12th, 2008 at 8:48 pm #

ONLY 103 days until she is 1 year old! She looks so happy.

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