Monday, July 25, 2011

We're Coming Out!

William is officially out of isolation! Well, as officially as his parents deeming the isolation period over. Next Sunday is the official 6 month mark from transplant, but since he is doing so well, we decided we are done. Don't worry. We're not doing anything crazy or careless, like licking shopping carts or sharing popsicles. We're just enjoying the company of large public places that may or may not have roofs. I still carry 3-4 pocket hand sanitizers in my purse, a large one in my car, and several placed strategically around the house and frequent hand washing will probably always be a way of life, at least for me because we know little boys will not do that on their own! But we are once again enjoying places outside our home with our whole family! (Big smile and sigh of relief.)

The final lab results checking the actual function of his immune system won't be drawn for one more week and the results won't be back for another couple weeks after that. We'll let you all know the findings.

We had a glorious weekend all together. We spent Saturday afternoon on the lake with kayaks. We had ours and borrowed a friend's and we all piled in. It was a gorgeous afternoon with lots of kayaks and canoes on the lake. We stopped several times and picked lots of wild blackberries and later made homemade ice cream. Ryan even taught the boys to cliff jump, much to my dismay. However, the "cliff" was about 2-3 feet high and they jumped to Ryan's arms. William still can't swim since his broviac is still in, but he wasn't missing the swimming this time as his brothers were gasping from the frigid temperature of the water.

Saturday night we celebrated Pioneer Day. For those of you not living in Utah (where it is a state holiday) or unfamiliar with the history of the Mormon Pioneers, July 24, 1847, is the day Brigham Young and the first pioneers reached the Salt Lake valley. Each year at this time, members of the Church of Jesus Christ of Latter-day Saints all over the world celebrate this day. We spent a fun evening in El Dorado Hills with all the local LDS congregations. There was a BBQ, bounce house, face painting, pioneer games, waterslide, snow cones, and a band. It was so fun to be as a whole family and when people asked us how William was doing, we were able to say "He's here!" and often point to where he was. William complained that his legs were sore from running around. That makes me happy.

Sunday was wonderful to all attend church as a family. And it was really nice to have 2 adults to keep the boys in line! William enjoyed seeing many of his friends again and showing off his just-barely-long-enough-to-comb hair. He's counting down the days until school starts and even has his clothes picked out for the day. Recently, he has commented several times that he wished the summer was over so school would start. Perhaps I need to record that one on camera!

Today William began his low dose IL-2 infusion. We spent a very long time at the clinic getting some labs test kinks worked out and then due to a shortage of home health nurses, finally got the infusion started around 8pm---at HOME. Despite the mild frustration from all the waiting and delays today, it is all better than being in the hospital. Normally this infusion is started under 24 hour observation in the hospital. However, William previously tolerated the low dose infusion just fine so the doctor cleared us to remain at home pending all other insurance approvals and various hurdles cleared. He'll complete the infusion on Friday night and we are hoping he keeps the typical fever side effect at bay so we don't wind up at the hospital for a late night antibiotic infusion. Then on Monday, Aug. 1st, William and I check back into UCSF for the 5 days of antibody therapy. This will complete round 4 of 5.

1 comment:

  1. Church with both parents cannot be overrated! Unless one has gone it alone with lots of kids for awhile, one cannot appreciate the delight of sitting together AS A FAMILY! Yay William! We continue to remember you in our prayers.