Time Keeps on Slippin’, Slippin’, Slippin’…

Joshua says “sorry for the extremely, super, duper, duper, duper long break since our last post”. :)

We’re almost through 6 days of May now and it’s reached the point where we often have to be told what day it is. For those of us who can leave the room, we’re in the middle of a gorgeous stretch of weather here in MD. Three straight days of sunshine, light breezes and temps around 80. Their climate is about a month ahead of Wisconsin’s, which for me means that my allergy season, which doesn’t end until June in Wisconsin, is already over. It’s a beautiful thing.

Not too much has changed with Joshua. His liver enzymes remain elevated at last check (Tuesday). This has happened to all the kids they’ve had here that have had the same condition and had their “PegADA” medicine removed. If it plays out as it has for all of them, the enzymes will come back down within a week or two. His neutrophil counts seem to fluctuate quite a bit and in his last two tests they were pretty low. 470 one day and back up to 650 the next. I guess they’ve been in the 800’s typically in the past and we have had 2-3 results in the 1,500 range while we’ve been here.

They changed a couple of medicines today in the hopes of boosting white cell and neutrophil numbers. One of the changes required him to go to another room for a new treatment, so he had to don a mask, gown and gloves to make the journey. Julie called me to let me know it was going and she said that Josh wanted to talk to me. When he got on the phone he just shouted “FREEDOM!!!”  He’s a funny kid. :)

Julie enjoyed her time back in Wisconsin, seeing many friends and family and popping in to church. Her doc appointments and ultrasound went well and everything seems fine with the baby (other than that silly little SCID problem:). Her doc said that he’d like to see her back in Madison to stay by early June (July 4 due date), so hopefully they’ll let us all go by then.

I was happy to be reunited with my lovely prego-bride. Interestingly enough, I actually had 4 good nights of sleep while she was gone (the last being Monday night when she got back), but the last two have been lousy again. It’s amazing what a difference it makes in how I feel and in my ability to really enjoy the day. Especially these beautiful days we’ve had lately. Sigh…  The good news is, my doc prescribed some sleeping meds for me and Julie brought them back for me, so I’m going to try them tonight and hopefully they’ll work without the potential “hangover” effect that our pharmacist said was possible.

Joshua continues to handle this isolation thing like a pro. It’s been such a blessing to have people comment about what a great kid he is, how easy going he is, how well he’s coping, etc.  He really has made this easy and as fun as something like this could be.  He’s keeping up with his school work well and passes the rest of his time playing Wii, Skyping with his buddies and family, making stop-motion Lego movies, watching movies, playing with mom, dad or the play therapist or working one of his computers. The one he’s working on below is the one in the room and he also has his own laptop here.


As I said, we’re hoping to be home by June if not before. They said a week ago that it would be at least 2-3 weeks and we haven’t heard anything since. I’m sure it will have everything to do with the numbers. We would like to get home of course, but we also want to be safe and we’re also hoping to be able to come home without a lot of restrictions as to what Josh can and can’t do. He and I have been talking about a possible adventure to Mammoth Cave in Kentucky after he gets out so we’re hoping we can do that and/or stuff like that with summer on the way. So for our praying readers, please keep the prayers coming, for lower liver enzymes, higher WBC and neutrophils and most importantly, for Josh’s continued health and protection.

Until next time…


Clark (Julie, Josh & Timmy, we think :)

One Response to “Time Keeps on Slippin’, Slippin’, Slippin’…”

  1. Susan Johansson Says:

    Josh, what a cool kid you are! You are living an adventure. It is fun to read and watch your journey. I know God, your awesome parents, baby brother (still cooking in mom tummy), and all your friends out here in “cyberspace” think you awesome & have a great attitude. Thanks for letting us be part of your life!

    Sending you a “high – five” through the computer – Susan

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