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!

Thursday, June 10, 2010

Routine...what's that?!

OK, so I haven't posted in two weeks again...where does the time go? Well, I'm trying to establish a routine around here, but most of you know that has never been my strong suit. Or at least having an organized, formal routine hasn't really worked for me. You could say that my "routine" had been procrastination! At any rate, here's the latest at home:

*Nathanael is doing well overall. It seems that his blood counts have stabilized, in fact his hemoglobin was 12 the other day...completely normal! That's not to say it couldn't change or drop again, but for now we're only having labs drawn once a week since his numbers have stayed so good. That also means we're only going to the hospital once a week for labs, check-up, IVIG, as well as central line dressing and cap changes. It's nice to get all of this done in one day, and it also means no home health visits for now.

From a developmental standpoint he's doing pretty well: he sits in his chair and eats whatever we put in front of him (though zucchini did NOT go over well yesterday...), he smiles, makes lots of noise, reaches for toys and people, cries when forced to take his oral medications (UGH!), and apart from not crawling or standing yet (ok, I haven't given him enough "floor time"...) he's on track, and we are very pleased.

*Jamison continues to adjust to being a big brother. He still loves doing puzzles, playing cars, building with blocks, reading, and constantly asks, "When can I be loud?" His speech is continuing to become more understandable, and he's not pronouncing his "s" sounds at the beginning of words - so he can ask for the "swiffer," not the " 'wiffer" when he wants to help sweep up the kitchen floor. :) He really is a great little helper, and is really a sweet little boy. When I was stressed this afternoon he said, "I need to rub your back," then ran to get the "Happy Massager" and proceeded to use it on my back for a few minutes. Of course he also wanted to brush my hair, which - I've learned the hard way - can be a little less relaxing!

*I am trying to figure out how to get everything done, and still have the emotional energy to really care for my family. Some days are better than others. Yesterday I steam-cleaned the kitchen and bathroom floors, washed all Nathanael's oral syringes (yes, that's a whole task...we must have over 100 of them...), did laundry, made meatloaf, and played with the boys. I was exhausted. Today I accomplished a lot less. Of course the minimum is to get the boys fed, give Nathanael all of his meds, keep them clean (well, change Nathanael's diaper and help Jamison on the toilet for #2), and spend some time playing with each of them. Oh, did I mention dinner? Ugh. So please pray that I would prioritize well and make good use of my time and energy.

*Brad is also keeping really busy with work and helping around the house. He's still handling all the grocery shopping for now, and continues to help with cooking and dishes, cleaning the kitchen, Jamison's bathtime, laundry, and whatever else isn't done by the end of the day so we can start the whole process over again in the morning. He also takes his day off on Mondays so he can spend the day with Jamison while Nathanael and I spend the day at the hospital. It would be nice to have a day together at home, but for now we'll take whatever time we can have as a family.

We are so thankful to be home together again, but still need your prayers for continued good health, for Nathanael's continued recovery, and for us to find what works best for us in our current situation. Since Nathanael is still on steroids (immune suppression) we want to be very careful to limit his exposure to the germs of others, but Jamison and I need some social time as well...I guess that'll be another post, since it's getting late and sleep is calling!

Please also pray for our friend LB whose transplant was delayed due to some complications. Pray for her counts to stabilize, for a quick recovery, for strength, and for her family as they come around her for continued support.


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