Enjoying a nice sticky treat for being a good girl in the echo lab!

Yikes!

Where has time gone??! I can't believe we're halfway through May already. The boys are anxiously looking forward to the end of school - and so am I! I love having all of my littles at home with me. We're hoping for a nice, relaxing summer vacation. :)

Rebekah is doing great! I am really so excited to say that she is doing fantastic! Yes, she still has high pulmonary pressures; yes, she is still on oxygen; yes, she still has feeding issues and takes four medications a day, but in spite of it all, she is thriving.

Unfortunately, our goal of weaning Rebekah's overnight feeds to an end did just that - came to an end. :( If you remember, Rebekah was at a high on her overnight feeds of 40 mL's/hour just before Christmas. By March we had weaned down to only 20 mL's/hour and things went downhill from there. It seems that Rebekah needs a certain amount of calories overnight to have the energy to eat during the day. Within a couple of days of getting down to 20 mL's, Rebekah had virtually stopped eating orally and she lost almost half a pound in two weeks. Her GI doctor recommended we increase back up to 25 mL's/hour, and Rebekah did seem to do better, but not great. When we saw Donna last week, she wanted us to bump all the way back up to 35 mL's/hour. So frustrating!! But, we want Rebekah to get all of the calories she needs, and I have to say that she is proving to us (mostly to me) that she is thriving on the additional overnight calories. She has been hungrier during the day, she is more active, has more energy and has even been skipping naps on a few days. This is in direct contrast to about six weeks ago when Rebekah slept sometimes 15-16 hours a day and would hardly eat anything orally during the day. I guess the g-tube and overnight feeds are going to be our friends for a long while to come.

Tomorrow we see Dr. Lucas (cardiology) for Rebekah's monthly check-up. I'm hoping the echo continues to show Rebekah's pulmonary pressures trending downward. I'm really excited about Dr. Lucas seeing Rebekah tomorrow. I think he's going to be pleased with how well she's doing.

I'm sure there is much more to tell you, but my brain is tired and ready for bed. :) I know I need to update on how Rebekah is doing in therapy and some developmental milestones (and a few concerns), but it will have to wait for another post. Hopefully soon. ;)

Oh, and for those of you in Greenville (or those who want to travel), there is going to be a Cruise-in Benefit at the 'Lil Rebel Restaurant in Greer on June 18th at 5:30 to help with costs related to Rebekah's medical care. I have heard that there will be door prizes, vendor booths, raffles and of course, the cars! If you were at Rebekah's birthday party last June, it is the same location. If you need directions, please click the link on the right sidebar to email me. We would love to see all of our friends there!!

Nancy