Posted 16 hours ago
Dear Friends,
Spring is definitely a time of new beginnings. The flowers are blooming; the sun is warming things up; a pair of duckies has been visiting our front yard recently looking for bread scraps; and Easter was beautiful. It has truly been a time of rejuvenation for us. It all started two Fridays ago when Julian had his NG tube removed. We had been anticipating this for weeks and it finally happened. For the first time in 15 months, he has not been connected at night to a pump of one sort or another. No more alarms, beeps, bags and tubes! He is eating OK, preferring sweets to veggies, but he knows he needs to keep eating or that tube goes back in. Now he is asking when his other set of tubes, his central line, will be removed. He has started sleeping in his bunk bed again and Nolan is so happy to have his brother back. In more ways than ever, he is like a regular kid again. Tomorrow is his next MRI and in a few weeks a final infusion of antibiotic. Then his central line will be removed and our clinic visits will be reduced to monthly.
His hair is growing back, too, and his energy levels are increasing. He recently went to an Angel game with Rich (his first since March of 2008), and on Easter Sunday we went to church and had dinner with both sides of the family. That made up for last Easter when he woke up with a fever that put him in the hospital for about 9 days. We sure enjoyed spring break, too. We had lunch at Ruby’s Café at the end of the pier and saw a sea lion and a pod of dolphins nearby (I overheard someone at another table calling them a 'pod' so now I'm using that word). It was a cloudy, rainy day, and most people stayed away from the beach, but the sun broke out and it was gorgeous. The boys also got a close-up visit at a fire station (thanks Minda!) where the firefighters treated them like VIPs. And, Julian’s biggest wish was fulfilled last weekend: he has been aching to hold a baby chickie. We’ve seen them behind glass in incubators but we finally found some chicks at the Youth Expo that he could pet and hold. He was so happy. The boys also got to pet bunnies there and learned all about different rabbit breeds (for ‘future pet planning’). [Note to any of his nurses who might be reading this: I promise he washed his hands right afterwards followed by antibacterial gel!]
There is much more I can write but one thing I must include is that "Jammin’ for Julian II" is in the works. People have been asking us if we were going to do another one, so we’ve set 4 p.m. May 16 as the date and the location is going to be St. Mark’s Presbyterian in Newport Beach. The amazing young pianist, Umi Garrett, will be performing again (she will literally be stepping off an airplane that same day from an international performance)! This time, all the proceeds will benefit agencies that support families going through cancer (Miracles for Kids, Beckstrand Cancer Foundation, Kristies Foundation and Red Wagon Foundation). Updated info will soon be available on www.jamminforjulian.org.
Thank you for your continued prayers. His MRI is tomorrow and there will be many more to follow. Blessings to you!
Andrea, Rich & boys
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