So I haven't posted much about Nathanael's health lately, as there hasn't been much to report. We did get some encouraging lab results from some recent tests, and had more tests done on Wednesday (the results of which we won't have for a few more weeks). I did want to share a little bit of what we know now:
Nathanael's immune system is starting to recover (he now has some B-cells, but still very few T-cells - a year ago he had record-setting T-cells, and his B-cell recovery was lagging, but all that was impacted by his bout with autoimmune hemolytic anemia, followed by 8 more months on steroids...). His doctors won't estimate what percentage of an immune system he has, but they did give us clearance to let him crawl on the carpet, and start to share toys and have more contact with Jamison. Yay!
His LAST dose of oral hydrocortisone (a steroid) will be given in the morning!!! I've been waiting for this day for months! However, the endocrinologists wanted me to be trained in giving IM (intramuscular) injections, and will have us keep some steroids on hand, in case he gets sick, and I need to give him something at home (under the doctor's orders) to compensate for the normal "stress dose" of cortisol healthy people make. (Nathanael has iatrogenic, or medically induced, adrenal insufficiency, and now we'll be watching and waiting to see how quickly his adrenal gland "wakes up" from its long hibernation.)
He is now not only crawling and standing, but cruising...much to our excitement (and sometimes, to our dismay!). He is loves to grab things, look at books, play with toys that make noise (thanks for the shaker, Sandy!), and will try to use utensils at meals. He also seems to respond appropriately to various emotions, including disapproval (that lower lip sticking out, and those big, sad brown eyes can really melt your heart). So of course we are thankful that after all that he's been through, his physical, cognitive, and emotional development seem to be on track, as he continues to make progress.
He is finally growing again! At just under three months of age, when he entered the hospital for transplant, he weighed 15lbs 12oz. At sixteen months of age he weighed 17lbs 9oz, and now at seventeen months of age he weighed 18lbs, 9oz, and has grown about an inch in the past month. It's funny to think that he was wearing 3-6 month clothes over a year ago, and that we've JUST NOW started to put away the 6 month size pajamas.
We are planning our next trip to Cincinnati for early March, and could use prayers for all the details that will need to be in place. We are so thankful for our social workers who are helping us with travel arrangements, and for our friends who will host us during our stay. (Oh, and the plan is for the boys and I to travel together so we don't need to find child-care for Jamison while Brad works.)
From June through January we spent over $1300 on prescription drug co-pays alone. That doesn't include doctor-visit co-pays, parking fees, payments made on the payment plans we currently have at five hospitals in two states. We have just started a fund-raising campaign to help our family meet all of our obligations and stay on top of our ever-increasing medical bills. To learn more or donate, please visit:
We could also use volunteers to join our COTA campaign, so if you're interested, please let me know. You can learn more about the Children's Organ Transplant Association below:
Nathanael is now only taking 5 oral medications daily (and 1 subcutaneous infusion - weekly) instead of 10 or more! We were so thankful to be able to stop some of his medications recently. For those who know how much I've struggled to give his medications, this makes a huge difference in our daily quality of life. Instead of an hour in the morning and at night, we now spend about 10 minutes twice a day giving medicine - sometimes it does include "bribing" Nathanael with TV - today we watched a few minutes of "Super Why" so he would just swallow without getting upset.
I think that's all the news from here...thanks for your continued prayer for us! We also love phone calls, emails, and facebook messages!