Blog

I'm sorry for the delay in updates.  I needed to take a short break from posting, but I'm hoping to get back into it soon. Not tonight though because we have to be downtown at the hospital with Keegan at 7am tomorrow to be admitted...

Home and together with family and marvelous food for Thanksgiving.  Just about everything we could ask for this year.We pray that it was the same for you and yours.  I am very well aware of how many blessings have come our way this year.  Unfortunately,...

How does the saying go?  If it's not one thing, it's another?  Yeah.  So, last night Gray and I ended up leaving an absolutely lovely wedding reception (congratulations, Seth & Sheradon!) to go to the ER because I had a gallbladder attack.  This was my...

Today, we had a little playdate at the Arboretum with our friend, Rylynn.  We are so thankful that Keegan and Ry are both outpatient.  Our fervent prayer is that they both stay that way, so that we can have more mornings like today....

1.  Keegan's ferritin level is down (which is encouraging) but not near what I would have expected with double doses of anakinra all weekend long - 500.  I don't have the full set of labs yet to know the whole picture, nor did I hear...

I honestly have no idea what to title these posts anymore. As anyone who has read this blog for any piece of time has probably noticed, I am not really in the blogging/journaling "mood", as it were, lately.  There are a variety of reasons.  None...

Keegan's ferritin was down just enough to keep him home!! A better post to follow with details. Thank you SO much for all the prayers. We are so grateful for God's healing hand and the love of family and friends. - Posted using BlogPress from...

We received Keegan's lab results from yesterday earlier today.  Unfortunately, Keegan is having a flare of the HLH/MAS.  His ferritin level (an inflammation marker) jumped from 455 last Tuesday to 15,000 yesterday.  Normal levels are usually under 75.  10,000 is usually the cut-off to start...

Keegan was discharged home yesterday afternoon.  His fever did not return, and he woke in a decent mood.  His labs stayed about the same, although his platelets continued to fall.  It isn't reasonable to sit around inpatient waiting on labs to get better.  As a...

Keegan is still inpatient.  He spiked another fever this morning, but once again, it broke on it's own.  He ate a little more today and seemed to be feeling pretty good until dinner time.  He refused to eat all but a few bites and got...