Luke 23:56b – On the Sabbath they rested according to the commandment.
It was neat. I think we all enjoyed it more than we enjoyed the Landscape and Outdoor Living Show.
This guy is huge… at least four feet long. He was not for sale, is nearly as long as he’ll get, but he’s only about 60% of his max size. He’s already over 50 pounds, now, if memory serves me well. That’s a big lizard. He’s a variety of Black Throated Monitor.
Her numbers are going up and that’s a good thing! Her Neutrophil count is actually up into the normal range. This is really good news, and we hope to cut back on the amount of times (at least) that she needs a shot. Currently, she’s getting a shot three times a week…
We haven’t heard back from the NIH about our bloodwork and the possible genetics component in her health struggles.
Laurel made some wonderful AIP-friendly pizza. It even had ‘cheese’ on it. And a wonderful crust! And it’s something that all of us could eat… Our food journey is still something we’re figuring out, and finding some delicious substitutes is good.
We started Katie’s Neupogen treatment. We are fairly sure that her fever was a side effect of the Neupogen working (also comes with bone pain) to increase her neutrophil production. Happily, her neutrophil count did come up quite a bit…
So, you can see in the picture, Kate is out and about, and is not wearing her mask! And that’s okay. In fact, that’s great! With her counts better we won’t be paranoid about her being around groups where there might be contagions in the air. She’s happy with that change also. It is a blessing to feel a little closer to normal. 🙂
So, we made it back today!
I did go up Sunday morning. Took some things that I didn’t get packed for the girls in time on Saturday… and since they rode in the ambulance to KC, they’d need a way back.
This is a first… one of our children going by ambulance to a hospital.
Katie is on her way, in this pic, from the Hutch Hospital to Children’s Mercy in KC. At this point, we still don’t know what’s wrong, but she’s running a fever. Now, we wouldn’t normally worry about a 101F fever, but since she’s very neutrapenic (low on the white blood cells called neutrophils) it’s a much more serious concern, heightened by just having started a treatment that should help those cells be produced more quickly, and combined with back pain.
So, she’s on her way to the hospital in KC with Laurel. We did dinner with the three remaining children at home, with Dad and Jeff (who’s in town for the weekend) and Lynn & Diane came out for a while.
We weren’t getting as much accomplished on the house as I’d hoped we would this weekend, but sometimes God changes your plans and little progress quickly changed to no more progress, and we continue to agree that God is Good.
We have decided that Katie should go full AIP (auto-immune protocol) diet, and Laurel will do that with her. The rest of us will remain mostly AIP plus eggs. We will see if this makes a difference.
Also, we are waiting for genetics testing results to come back from the NIH, and have hope that we might be given a direction to move in regards to a treatment for Katie… so far we don’t even really have possibilities other than the neutrophil booster.
And we will continue to remember that God is Good. Every Good Gift comes from Him, and only Good Gifts come from Him, and everything is under his sovereign and immediate control. Even as the ambulance pulls away with two of my girls in it, I’ll remember who He is, and why I am.
Here’s a list of what he considered important behavior.
- Be clean both inside and out.
- Neither look up to the rich nor down on the poor.
- Lose, if need be, without squealing.
- Win without bragging.
- Always be considerate of women, children, and older people.
- Be too brave to lie.
- Be too generous to cheat.
- Take your share of the world and let others take theirs.
A good list, in my opinion.
Laurel has posted an update on Katie’s health, you can read it here.
We went up a few weeks ago, and saw some trains at Union Station:
Well, it’s been a while since I’ve done anything with the blog. So a few weeks ago, I started updating it, crashed it, got it back, finished updating it, redesigned it, and now it’s working again. Laurel’s blog http://www.grace-and-glory.com is also back up, though not without continuing hiccups.