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!