Posted (Tina) in All Posts on May-14-2009

Ella had a rough night. She was up a handful of times, so she needed more rest this morning. Our OT session was canceled and that may not have been a bad thing. I didn’t get the sense that she would have tolerated the session. This gave Ella more time to wake up, relax and decide that she wanted to work this afternoon for PT. Once again, she did really well and the pictures are evidence of her starting to tolerate the weight-bearing exercises more often.

We’ve increased Ella’s bolus feeds during the day to try and eliminate the nightly feed via the food pump. We haven’t quite reached our goal, however, we decided to try and bolus 6 times per day instead of 5 times. It has been tough to get the last feed in late at night before she goes to sleep, but we have managed to try it a few times this week with success. As she continues to grow, it is easier to see how getting rid of the food pump at night might start to become a reality. That reality is exciting!

Ella has ceased gaining weight over the past week to ten days, so it might be time to increase her volume of food. We will not get a weight on her for about 10 days while we are on vacation, so if she has not increased her weight by the time we return, I will need to place a call to her doctor to see if we can increase the volume. Since she is so fluid sensitive and we do not have any conclusive results from the post-op SVC procedure, he may decide that weight gain is not a priority.

We’ve had a few good bath times over the past week. Not all of them, but we’ve had more than a sporadic occurrence. It is so much more enjoyable to give a bath without a child screaming and not breathing!

We’re excited to wake up and start our drive tomorrow. It will be interesting to see how Ella does since the first shift of driving is long. Although we will stop for breaks to feed her, change diapers, etc., I’m very interested to see how she does over the long haul. The only time we’ve done a long drive is on our way back from Florida. We limited each day to 4-5 hours of solid driving with breaks. Our first day tomorrow will be nearly twice that amount. She is older and enjoys the car more, but that is still asking a lot of the Bun! And we will be in remote areas where nothing exists, so please pray for our safe travels and for Ella to be in a good mood!

Joan and Steve Odell on May 14th, 2009 at 5:47 pm #

Dear Hearts – safe journeys and enjoy your trip – it is good to have a break and new scenery for all of you!! As you know – go with the flow!! Take care and Lord Bless – Stebe and Joan

Julie on May 14th, 2009 at 7:13 pm #

Hope it all goes well. You all deserve a nice family vacation.

Amber Riley on May 14th, 2009 at 7:51 pm #

Have a safe journey. Hope Ella enjoys the ride…

Kellie Myers on May 14th, 2009 at 8:17 pm #

The last picture of Ella sticking out her tongue is priceless. I hope you have a safe and enjoyable trip! I’ll be having Ella withdrawals if you don’t blog 🙂

Christe Mitchell on May 14th, 2009 at 8:45 pm #

Praying you guys have a safe trip and a great vacation time.

Melissa Morris on May 14th, 2009 at 10:29 pm #

I hope and pray that Ella does well on your trip.
Hopefully you all are able to relax and enjoy your vacation.
Be safe and drive carefully.
Have a wonderful visit with everyone that you are able to get together with.

Kathy in West Texas on May 15th, 2009 at 4:01 am #

She looks darling in those pictures! Did she get a hair cut, cause she just looks too cute!

I will keep you in my prayers for a safe trip!

God bless you all!


Liz Nelson on May 15th, 2009 at 10:30 am #

Praying you have a nice and safe trip. We will be prayinng Ella does well on her first long road trip. Have a fun and relax. We will be going to So Cal next week. That will be our first major trip with Nayeli.

Joel Snyder on May 15th, 2009 at 3:55 pm #

Ella, I am home waiting for the girl to come and clean the house. Maggie is on the chair with me and Manny is in the back yard sunbathing. I hope your first day on the road is going well and that you have a great trip. I will check on you later. Love,Grandpa!!!!

Fran Jarrett on May 15th, 2009 at 9:31 pm #

Safe journey my friends. You all certainly deserve a change of scenery and some relaxation. Prayers are with you.
Love your hair Ella!!

Kara on May 17th, 2009 at 12:09 pm #

I love the Gene Simmons tongue!

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