How Liam felt about eating today...

Appointment yesterday went well, but we think last week's dose is catching up to him...

TGIF

Quick update to let you know Liam had a great week. We were worried since he had the double dose Tuesday, but he bounced back within about 24 hours. We heard from Julie, she was having trouble with stairs, but otherwise did well too. Quiet weekend planned, hopeful for lots of outside time. Next appointment isn't till Tuesday. Stanley's coming for one last ride before we ship him back to CT.

4 hours, 43 minutes, 34 seconds

Ready for the Marathon

We had a special night tonight, a big pasta dinner at the Seaport Hotel for the Mass General Marathon team. Julie presented Liam with a medal of honor, although looking at tomorrow's weather - she's the one who deserves the award!!!
Owen, Jack, Nana and Papa came too. We all got bright green t-shirts to wear to support the runners tomorrow. We are going to decorate ours with Julie's name.
She's going to have "Flat Stanley" pinned on the back of her jacket during the race. Flat Stanley is a project my nephew Zachary is participating in at school... he's sure to get an A+.

Tomorrow, we'll be Dr. Weinstein's house waiting for the MGH runners to go by... we are estimating Julie will pass by between 1:30 - 2pm. Watch for pictures!!

Have you seen my Pack 'n Play?

Liam did well this morning at his weekly appointment; although I think we are all still a little tired from a very busy Easter. (All the extra candy went with us to Boston today). We noticed for the first time today that Liam is losing the hair on the top of his head, Dr. Friedmann was surprised it held out for so long. We prepped everyone in the office for next week's appointment; we've decided to bring Owen and Jack in next week to see where Liam spends his time. Between the play room and DVD player's in the patient rooms we think we'll be ok. Next week's appointment will be on Tuesday since we'll be spending Monday cheering Julie on from around the 20 mile marathon mark... Her bib number is 22730.

Liam continues to get around more and more, time to put the gates back up in the house. He's also slept though three of the last four nights. Seven more treatments to go!

Happy Easter!!

great day!

Great Day, except for the weather. Quick appointment today, Bridge went solo. Liam’s in a very good mood… chowed lunch and has been pushing himself around the house backward. Hoping for a good week too…