By all accounts Nathanael sailed through his first 100 days, but after that things got a little more complicated. His central line infection (in March) put us back in the hospital for 2 weeks (and on heavy antibiotics and high-dose steriods - which needed to be weaned over 12 weeks). His bout with autoimmune hemolytic anemia kept us in Cincinnati for a month instead of a week, and put him not only on steriods again, but also on retuximab (which supressed the growth of his B-cells, an important part of the immune system). His two urinary tract infections in the past month have put us in the hospital twice (again on heavy antibiotics...at least we're not on high-dose IV steriods anymore!), we've seen his weight fluctuate, and have had to use an NG tube again for a few weeks. Now we're at home, but still giving IV antibiotics (Gentamiacin - at least it's Q24hrs, instead of Q6 or 8!) for another two days. We're also facing a VCUG test to make sure that he's not experiencing any kidney reflux that could be causing these UTIs. Any time a catheter is inserted (as was done for urine collection, and will be done fpr the test) we run the risk that he'll get an infection, so I'm not thrilled about this. We also need to get a surgery date for circumcision and central line removal. (Part of the issue here is that before his lines are removed we need to test out a new form of immune globulin to make sure he tolerates it well. If he doesn't, then we'll have a port put in his chest, but if he does, he can be free of lines!)
So those are a few of our setbacks, but another result of all that is that Nathanael still takes between 8 and 13 oral medications each day (some of them 2x and some 3x daily). Giving them is stressful for all of us (I think it's even hard on Jamison to watch...) as it seems like some awful kind of torture. Despite all my best efforts, the most effective method I've found is to lay Nathanael in my lap, squirt medicine in his mouth, and pinch his nose so when he cries he is forced to swallow. UGH! Yes, I've tried blowing in his face, tickling/kissing him, putting it into the side/back of his mouth, distracting him with Daddy/TV/big brother, hiding it in some of my milk...you name it, we've tried it. I may resort to putting an NG tube back before too long. It stinks for my baby to have another tube in him, but giving meds becomes EASY with it in. Even checking placement (a little bit of an irritation) is pretty simple - just get me my stethascope and a clean, empty syringe...all I need to hear is a little "pop" of air in his tummy. So because most of these medications are given to prevent illness/infection, he will need to take them until his T and B cells grow, which could be MANY more months.
Last year I met a woman who spent day +365 back in the hospital with her son, and I was so sad for her. She had been so kind to me on my first day inpatient with Nathanael, and I couldn't imagine being that far post-transplant and having to go back into the hospital, but at this point it actually seems feasible. This really has been a much more difficult journey than I had imagined. I now realize how little I knew about this from when Jeff had his transplant...so much has changed. It does make me see how God had protected my brother though. How else could he have survived having two older siblings in school, bringing home germs every day? What about the possibility of GVHd with all of the sun exposure? (Or was it just God's providence that we lived in northeast Ohio, where they get fewer days of sun than the pacific northwest?)
So, apart from all of that, Nathanael is a pretty happy little boy. He is quickly becoming more mobile now that he feels better. He is starting to try out an "army crawl" and today reached the edge of his blanket on the floor and grabbed hold of some of Jamison's (large) puzzle pieces. (Of course, I quickly grabbed the pieces and wiped his hands with Wet Ones - away with the germs!) He LOVES to watch his big brother, and he is interested in everything around him. He has started to eat solid foods again (he really liked the mac n cheese in the hospital!), and is now taking sippy cups with both spouts and straws.
Jamison is becoming more and more independent...just ask my mom, who just spent a week with him! He wants to do everything himself, and sometimes that wears me out, and sometimes it warms my heart. He has been asking us recently, "Teach me to pray" so his most common prayer these days is "Dear Jesus, thank you for this day, thank you for this food (yes, even at naptime!), thank you for ______ (loving us, for Nannie getting home safely, etc.). Please give us a good day (or night's sleep), and please use us to glorify your name. In Jesus' name, Amen!" It is so sweet! Of course, what's NOT so sweet is when you want to pray something else and he throws a fit. Sequence is very important to him, so he likes things in the same order each time. And he is very proud that he's growing up into a big boy. He likes to talk about how someday he will grow big enough to reach the ceiling. We just keep reminding him how tall we are, and that someday he'll be as tall as (and hopefully taller than!) we are! ;)
I thought you'd enjoy a few recent pictures of the boys. I'll post some videos later this week, and I've been meaning to find some one-year-old pictures of each of them to post side-by-side...I'd like to see the similiarities and differences, and it would be fun to see how much Jamison has grown.
Please do keep us in prayer, as it's so easy to get discouraged these days. Pray for opportunities for Jamison to play with other kids and to learn to share, for Nathanael to continue to recover and stay healthy, for him to respond well to his new medication, and for the right date for surgery, for Brad and I to be focused on the Lord and caring for our family, and for God to use us in some way to bring glory to Himself through all of this. Thank you for standing with us!