Thursday, May 14, 2009

We're OK

Ok, remember somewhere around, I dunno, July or early August 2008 when there would be no posts for awhile? I know, it's a long time ago, but just try to think was because things were alright, no big news to report. Remember "no news is good news"? Well, we're back, baby. I haven't posted in 9 DAYS because there hasn't been anything too earth-shattering to report. Unless you really want to hear about how we've been absolutely killing ourselves with unpacking, organizing, cleaning, ordering, laundering, dog-walking, appointment-making, appointment-going-to, and outright hacking off of the overgrown roses/holly/etc in our yard! We've honestly accomplished some very normal things in the last nine days, such as getting haircuts (even Rusty!), finished babyproofing since K is a walking maniac, washed too many crib sheets from leaking g-tubes, ordered some summer clothes for K, walked Rusty as a family, even went to the grocery store once. I know, it's insane, right?

Keegan's had only one appointment so far, with his GI doc, last Friday. We didn't get lab results until Monday. Some numbers were up, some down, but for the most part, everything was stable. He goes to cardiology clinic on Monday, and then the end of May is just chock-full of doctor visits - pediatrician, hematologist/oncologist, dermatologist, and back to the gastroenterologist. He's had a few nights of rough sleep, but it doesn't appear to be from pain. His belly isn't distended, although we're worried he may have lost a bit of weight. He is much more active now, though, so that could definitely be a contributing factor. We're waiting to hear back from the feeding therapist for an evaluation appointment. He still isn't eating consistently, but we put him in the highchair three times a day to at least try. That will be a very long road to get him off of the continuous daytime tube feeds.

We are looking forward to the dermatology visit at the end of the month. Keegan's skin remains his most noticeable problem, especially around his eyes. Some days, like today, it's not too bad. The rash will be mainly contained under his clothing. The bad rash days are more difficult because that's when you can look at his face and tell he's not a normal, healthy kid (if the feeding tube coming out of his stomach didn't give it away). There was talk in Boston of doing a skin biopsy to determine if the rash may be something that pulls all his symptoms together (a post-transplant issue called graft-vs-host disease, will post more about that later). But tonight at the park after dinner when he was disconnected from his feeding pump, he looked like any other little boy on the playground. That certainly makes our hearts swell with joy and gratitude for our blessings.

I could go on, but I still have quite a bit to do tonight. I worked in the yard all afternoon (thanks for your help, Mamie), and the mosquitoes were out in force! Time for some benadryl! We'll update again after cardiology clinic on Monday. In the meantime, don't worry if there are days between posts - we promise we'll let you know the important stuff. Have you seen the latest photos of Keegan? Also, please please keep Little Miss Avery's daddy, Paul, in your prayers. He is having disc herniation and fusion surgery on Monday. This is a very serious surgery, and your prayers would be much appreciated. We ask the Lord to send his angels to be with Avery's family - to carry Paul through the surgery and provide him with courage and healing, for Avery's health to stay stable as Paul recovers, and for peace, strength, and patience for Angie as she cares for her beloved family. Thank you so very much.