Crazy busy

Justin and I had a great weekend away! It was so nice to get a break, particularly from Emily's feeding schedule. It was a time of relaxation and getting to do some things that we can't do with kids (like go in antique stores, ride the bike together, etc.) Things have been pretty chaotic since we came home. Last week Emily had a check-up with our GI. Based on her liver size, he thinks that there is fat going back into her liver. The leptin should be protecting against this, so I emailed our NIH contact to see what is going on. She said that the body makes antibodies for the leptin and most likely Emily needs an increased dose (we go to NIH in the beginning of July, so they can reassess then). Emily is having a brain and spine MRI in August, so the GI ordered a liver MRI to be done at the same time (they can then compare the amount of fat to the scan she had done in December). The nutritionist was again frustrated with her lack of weight gain (even some weight loss since another doctor visit). So she increased the calories in Emily's feeding. We were back with the GI for Luke today and I was not surprised to see that Emily had gained almost 2 lbs in 8 days, despite numerous vomiting episodes. So that being said, we are back to the normal calorie intake, as her liver is taking in the extra fat, not her limbs. Ok, back to Luke, the GI thinks that he is having migraine stomach aches. Most likely there is a trigger, just like people have with migraine headaches, so hopefully we can figure it out. Otherwise, as soon as he complains of stomach pain we have to give him tylenol or motrin to try and head off the "migraine". The GI did order a x-ray to check for malrotation, but otherwise we don't have to check in again. And Luke can stop taking the Prevacid. Emily also saw the ear doctor, and both tubes are now out; hopefully her ears with stay clear without them! We have been running around to the different therapies, my cousin's graduation, and a wedding reception. Luke is officially done with kindergarten today, and Heidi and Anna will be done tomorrow (Emily finished last week). They are all sad to leave their teachers and friends, but hopefully we can see people at the pool this summer. We were also approved to stay at the school, despite our address being within different school lines (we didn't want to switch schools twice in one year, assuming we move in December). Work is busy for Justin, he is doing a lot of driving, and continuing to be tough on safety aspects (he has been called the Terminator and Hitler). Our summer is panning out to be a busy one, with quite a few doctor appointments and tests, our trip in NIH, another wedding, birthday parties and a weekend or two away. I am off to finish up teacher's gifts!