Posted (Tina) in All Posts on February-23-2009

Ella did not sleep great last night, but still seemed to be in a better mood than the week prior.

Kelly tried oral feeding Ella again today, just pears. Of course, she melted down. We took a bit of a break when she was having a tough time with the density of food late last week. So of course, starting up again is really painful. At least the afternoon session was a bit better than the morning session.

The PT session went pretty well too. She is still trying to get the knack of rolling over from her belly to her back. She forgets to lift her arm out of the way, but she is getting close. They also spent some time today in her bath of pinto beans. Again, this is to help Ella with her tactile stimulation.

Ella showed more weight loss this morning, down to 9.27 kilos. The pulmonologist has not answered us back for a couple of weeks now. So we’ve had to exercise our best judgment and move on.

One decision today: since she will not tolerate the increase in the density of food, we are increasing her volume of food to 920ccs, which will put her at about 100ccs per kilo per day. This was always the rule of thumb we’ve used since the NICU days, so I’m sure it is fine. Dr. Perry also thought it would be fine, especially since she will not tolerate the density increase. Hopefully, the extra volume of food will not cause Ella’s lungs too much grief. Plus, we would like to see normal weight gain each week versus weight loss. So far today, the food increase has been tolerated by her belly just fine. That is a good sign. We won’t know the impact of the additional fluid on her lungs and respiratory function for a few days yet.

In addition to the food decision, we also opted to cease her Prevacid prescription. Dr. Perry recommended that we cease it back in early January. When I asked the pulmonologist in late January to confirm, he wanted to wait until her upper GI on Feb 5th. I’ve emailed him and he hasn’t answered back. When we saw Dr. Perry again on Feb 19th, he asked if we had ceased the prescription and again emphasized that even with the GI results, the Prevacid is probably not doing much. So when the prescription ran out last Thursday, we checked the bottle – there were no refills. So, Ella has been off Prevacid since last Thursday and we have not noticed any difference. Again, hopefully these two decisions will not have any adverse impact on the Bun.

We are sure glad to get rid of one medicine. Now, we are down to Captopril, Sildenafil, Reglan, Flovent, Aldactazide, and a multi-vitamin.

One more “normal” day until Ella’s procedure. Just praying for a medical miracle for our baby girl.

Psalm 77:14 (NIV)
You are the God who performs miracles;
you display your power among the peoples.