Old Eli

Hope everyone had a good weekend. We were so thrilled to be out of the hospital. I really think it was good for Eli. I notice that when he’s inpatient for several days, he really shuts down and blocks people out. A smile is pretty rare. When you get him back to the Ronald or home from a long stay at the hospital, he really starts to liven up and the laughing and playing resumes. I always say we “have our old Eli back”.

One drawback is that on Friday afternoon when we walked into the Ronald, I put Eli down and he took one step and then screamed in pain. His left foot was really hurting him. He couldn’t put any weight on it or even put it flat on the ground. Our theory was confirmed today by the nurse practitioner that several weeks of very minimal use can cause atrophy and we think he has a tight tendon in his heel. SO, getting Eli to put any weight on his left foot is always a drama full of screaming and crying. No matter how much we try to explain it, he just doesn’t understand that exercising his foot and making it hurt will actually make it heal and feel better. It’s frustrating because otherwise he would be happy and energetic!

We had a fun weekend at least. Lacey’s dad was here for the weekend and he took us to the Children’s Zoo and Central Park Zoo in Central Park. It was a bit chilly, but a lot of fun.

Central Park Children's Zoo

So today was bone marrow day. Oh joy! Long story short, they told Eli he couldn’t eat until the procedure because it included anesthesia and they messed things up to where they didn’t get him in until 1pm in the afternoon. Talk about a starving boy! Anyway, he always wakes up TERRIBLY from anesthesia (come to think of it, he doesn’t wake up from sleep that nicely either) and it takes him a few hours to get back to normal. He is also very sore because he has two pokes in the back and two pokes in the front. 🙁

They went ahead and gave him platelets today so we don’t have to come back in to check his counts Tuesday or Wednesday and we can report right to CT on Thursday morning. We’ll get our MIBG injection on Thursday afternoon and come in for the MIBG scan (requires anesthesia) on Friday morning. Kushner said we should look at the MIBG scans together an hour after they are done so we can discuss the next step. He said that the preliminary bone marrow results should be in then as well and we can decide if we’re going to do 3F8 or “Hot 3F8” which is 3F8 that also carries radiation to the neuroblastoma with it.

Here are some pics from tonight’s “50’s Sock Hop” they had at the Ronald. It included an Elvis impersonator and professional swing dancers. Lots of fun, even though Eli just wanted to sit in his stroller and play with his toys. 🙂

Sock Hop