So I guess it’s about time for an update, huh?
Well, Eli has been feeling better and better each day. We’re not quite back to normal yet, but we are steadily getting there. By Saturday night, Eli was feeling really bad and even back to throwing up again (still not on TPN). Lacey was researching the antibiotic that the dentist put him on and it was a particularly nasty one, specifically causing stomach issues (something we JUST started getting over). She called the dentist fellow on call and asked if we could switch it to something else. She called the dentist and home and she just said, “Oh, just quit giving it to him.” We honestly weren’t overly impressed with this dentist’s communication with the team or the way she seemed to just “wing” his surgery, but she did good dental work! The next day after stopping that antibiotic, we could tell Eli felt MUCH better. Since he still isn’t on TPN (and wasn’t eating well at all), we requested that he be put on Megace (the appetite stimulant) and they agreed whole heartedly. Even before the Megace has kicked in, though, we are noticing he is starting to eat better and better on his own. We still have Eli on hydration though, because his electrolytes are still a bit out of whack and he needs help stabilizing those. He also just simply doesn’t drink enough during the day yet to stay hydrated.
Eli’s urine tests came back high and out of the normal range, but then we realized that he had been hooked up to TPN the night we were taking the sample, which will throw them out of whack. So we redid the test this week and should find out on Friday if his VMA and HVA scores are still in the normal range. If they are high, that would suggest cancer activity is flaring up, so we are praying for low (normal) numbers!
This weekend, in typical Horn fashion, was full of activities. I’m tempted to just tell you to read up on Coleman Larson’s CarePage because Peggy did a great job of covering the activities since they were there with us for all of them. 🙂 One thing we did do on Saturday with just the 4 of us was go to the new Star Wars: Clone Wars movie. It was pretty cool and Eli really enjoyed it, although he did fall asleep by the end of it. Saturday night was a Mets game in the box seats and free food. We are totally spoiled by this now and the next time we go to a Mets game and have to take the Subway for an hour and a half each way and pay for our own $9 chicken strips, we are going to have to remind ourselves how fortunate we are to be able to get the tickets for free from such generous donors. Since this was the height of Eli’s antibiotics taking him for a ride, Eli basically slept on the comfy couch the entire time. This was probably our favorite game yet, though, because we got to go with the Larsons, Lou and Griffin Schager, AND our favorite House staffer, Rich.
Sunday was a BBQ on the river in Yonkers, NY that was a benefit for the Ronald McDonald House. They bussed over families and we got to enjoy free food, drinks, facepainting, a rock band, and a magician. The highlight for the boys was probably getting to crawl all over a fire truck and let loose with the sirens.
Monday night we were treated by the FDNY to a harbor cruise on their impressive fire boat. This thing pumps out 14,000 gallons of water a minute (the same amount as 14 fire engines) and was a big player on 9/11 when the hydrants went out. Unfortunately, Lacey had a moment of “I think I can do this” and got on the boat. That moment faded about the time the boat started pulling away from the dock and she spent the 2 hour harbor cruise kneeling by the side of the boat waiting for the inevitable. She did get to enjoy the beautiful harbor and the Statue of Liberty, though! We got to see the sunset behind the NYC skyline and saw the underside of the Brooklyn Bridge after spending a day walking on the top side of it! Eli spent a good portion of the cruise up in the Captain’s quarters with a volunteer. Leave it to him to find a bed to jump on out in the middle of the harbor.
How about a food review? Today the Larsons and the Horns set out for a lunch adventure at Big Daddy’s Diner. For those of you in the Des Moines area that remember Stella’s Blue Sky Diner, it’s a lot like that. Anyway, it looked to be pretty kid friendly from the outside and sure enough, it had a stroller parking area full of helium balloons for the kids when they left. It had a much smaller menu than the other diners on the Upper East Side, but the food was really good. Lacey had “the best pancakes she’s ever had” and I had a really good pizza burger (that could have used some oregano to be perfect). All three boys picked Mac n Cheese for their meals and not one of them really liked it. It had a smoky taste, but it almost tasted a bit like peanut butter to me. Each kid picked a different side. One had fries, one had tater tots (yeah, I had tater tots instead of fries as well and it was a good choice. They are very crunchy and tasty there!), and Eli picked alphabet soup. Eli actually asked me if we could go back there for alphabet soup some day because “it was delicious.” It’s priced about the same as the other diners and we got to walk by the big Doggie Day Care place on the way, which is always fun to peek into. If you do go with your kids, here’s a tip: Don’t read your kid’s balloon out loud once you get outside the restaurant. They read “Who’s your daddy?” and asking that question as people walk by can get some funny looks. 🙂
Tomorrow we head back into the clinic to get retested for electrolytes and see if there is anything we need to do differently with Eli’s hydration. Thanks for checking in with us and thanks to all of Coleman’s followers that have joined Eli’s Prayer Warrior Army as well.
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