May is 2/3 of the way over, and I have yet to blog once this month. I could offer some excuses, but the truth is, I've kind of been avoiding this moment. Ordinarily, I enjoy posting regularly about goings-on in our life and sharing the good and bad moments of being a mommy. But I'm also pretty transparent as I write, and I haven't really felt like baring my soul lately.
There's no way that I can fully catch up on the last several weeks during my hiatus, but I will try to hit the highlights.
~I'm getting fatter by the minute, and my c-section is now scheduled for July 18...only 8 weeks away!! Emerson is growing and quite active, and her room is in the final stages of completion. Phillip is wondering what else I could possibly squeeze in her room. My sister had me a baby shower last night, and I got so many cute things! I thought I had a lot of stuff with my boys, but I'm pretty sure I've got even more for this little girl!
~Bryson finished his last day of preschool last week. I was so proud of him as he stood next to his teacher to receive his certificate! He looked so shy and serious. His teacher said that Bryson has excellent manners and is always so polite. I was thrilled with the good report and with his academic progress. As we walked outside following the festivities, there was an ice cream trolley waiting out front selling ice cream to all of the children. There's not many things that Bryson loves more than the ice cream trolley! Then I suddenly realized that I had no cash on me, and I had to tell him he couldn't get ice cream on his last day of preschool. Talk about feeling like a bad mom!! We walked past all of his friends in line or enjoying their treat, and I ended up taking him through Wendy's for a frosty. It wasn't exactly the same, but I tried to make up for it!
He's now officially registered for Kindergarten or Young Five's starting in August. He won't be 5 until August 16th, so we had been trying to decide whether or not to start him in Kindergarten. Now with plans of a bone marrow transplant for Avery which is going to put some serious stress on our family and have me in Cincinnati for months at a time with him, we decided we should probably put it off. So, we're planning to start him in the Young Five's program unless something changes between now and then. I can't believe he's even old enough to go to school!
~Avery has been truckin' along, smiling and clapping despite the many transfusions. He isn't making many red cells or platelets these days, so we're spending a lot of time in the infusion room. The study that he joined at Johns Hopkins has brought to light some new information that may point to the reason for his bone marrow failure. It's kind of complex, but essentially, Avery's end caps (telomeres) on his cells are too short. A normal person is born with longer telomeres that shorten over time through thousands and millions of cell divisions, which cause the telomeres to slowly break off shorter and shorter, leaving the cells exposed to potential damage and mutation. These damaged/mutated cells are what brings about the aging process: graying hair, loss of muscle tone, arthritis, and of course things like cancer, tumors, and organ failure. Because the blood cells divide more rapidly than other cells in the body, one of Avery's first characteristics of these shortened telomeres is bone marrow failure. A successful bone marrow transplant will fix his cells in his bone marrow; however, the cells in the rest of his body also have shortened telomeres. So, according to the doctor who is overseeing this study, we can expect signs of premature aging to affect Avery within the next decade. Some of these effects are pretty severe and life threatening.
This news has brought a dark cloud to my world lately. I try not to worry about the future too much, but sometimes I just can't help it. I have to admit that my faith has wavered some, but I'm trying to stay strong as I process this information and try to give it to God. As my husband said when he heard the news, "We know the man who made the telomeres."
Beyond this development, we've also been moving along in the bone marrow transplant process. The search coordinator told me a few days ago that there are 8 potential matches in the National Registry that they're going to screen more closely. Hopefully, we'll know within the next month whether any of these donors could be used for a transplant.
~Phillip is working his last week of second shift, thank God. I'm so looking forward to him being on days. We can actually have dinner in the evenings together and do normal, family stuff! He's also been working on some house projects that have been long in coming. We're in the process of getting new siding, and then after that, we can finish our landscaping, get a new deck, pour a new driveway...whew! Makes me tired just thinking about it, and I'm not even the one doing all the work! I am glad I've got such a handy husband.
Despite the concern for the future, I am so looking forward to having some good days with my family this summer. We're hoping to take a short vacation to Tennessee in a couple of weeks if Avery and Emerson cooperate. We'll just take the rest a day at a time, which has become my mantra lately.
As always, we sure appreciate the prayers that so many of you all offer on our family's behalf.
~Bethany
