New Blog for Nathanael

We recently started fundraising with COTA to cover Nathanael's medical expenses, so updates about him will be on his new blog from now on: Please check out the blog, pictures, and opportunities to help, and feel free to pass along the link to others. We appreciate your concern!

Saturday, January 29, 2011

Moving Forward

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!


Saturday, January 22, 2011


This year we started our holiday celebrations with lighting the menorah (though next year we'll aim for nightly readings as well - we only really talked about the holiday a few times). However, Jamison still really enjoyed the candles each night, and especially loved blowing them out! We were also able to spread out our celebration of Christmas over about a month, and we had family in to visit on both ends of that month. In early December my parents drove down and stayed for about a week, helping us with things around the house, playing with the boys, and enjoying the mild weather (compared to the cold in WI).

On Christmas day we saw Brad's parents via Skype, and had the boys open presents so their grandparents could see them. We're so thankful to be able to keep in touch that way! Then Mark and April came over to share a meal and spend the afternoon with us. It was so nice to spend a low-key day with friends - it almost seemed like things were "normal"! They read this really great version of the Christmas story ("What God Wants for Christmas") to Jamison - while Nathanael took a long nap - and he opened little boxes with the various characters along the way (including a mirror in the last box to show us all what Jesus wants for Christmas).

In January Brad's (paternal) grandmother came out for a visit, which was so nice for us...since it has been about two years since our last visit with her. It was great to see her, and especially to see how she loved playing with the boys. Of course Jamison loved having her here, and kept her entertained with stories and questions about bugs, dinosaurs, and all his favorite topics!

After she left we decided it was time to put away Christmas decorations. Jamison and I are a little sad that the stockings are no longer up, and that the tree decorations are put away, but we have them all ready for next year (even labeled by which ones are most and least fragile - i.e. the ones Jamison can unpack by himself!).

Of course we are most grateful that we've been able to spend this holiday season together, and we look forward to many more holidays together, and with family and friends!

Thursday, January 6, 2011

Thankful for so much in 2010

Looking back 2010 was an incredibly challenging year, but we also have so much for which to be thankful. Here's a short list (well, you know list is short!)in no particular order:

*Two precious, adorable boys - hope you enjoy this video of them!

*Our parents, who lived with us - in 2 states - to help care for us and our boys

*Friends in Cincinnati who provided meals, lent furniture and household items for our apartment, welcomed us into their homes in May and August

*Friends at home who cared for Brad and Jamison during my 7 months away in 2009-10

*Friends and family in both places who worked on our homes, handled repairs, installed things like flooring and fans, and helped finance such projects

*A dear friend who spent a week with Nathanael and I in Cincinnati, cooking for us and taking care of me

*Staff at Cincinnati Children's Hospital

*Staff at Children's Medical Center Dallas

*Manager of IKEA in Cincinnati who donated a gift card to help us set up a second household

*Manager of Kroger and Biggs (grocery stores) who donated gift cards to help fill our refrigerator and freezer prior to our arrival

*Friends who gave us grocery cards and meal cards for the hospital

*Friends and relatives who sent mail, pictures, and email during our lonely days

*Everyone who prayed for us - and for those who continue to pray

*Good health - I have not been sick in almost 2 years (!) and have been able to devote myself to caring for Nathanael, and now to Jamison as well

*Of course, God provided us with all of this help and support, and He also sustained us through months of living apart, many months of isolation, and has given us LOTS of opportunities to grow and trust Him.

I'm sure we have much more to be thankful for, but at the moment I need to go fix dinner! Please count your blessings, and praise God with us for His goodness, and may all things be for His glory!