Archive for May, 2010

Parole Denied

Friday, May 28th, 2010

Just a quick note to let folks know that it doesn’t look like Josh & I are coming home with Julie next Wednesday. :( His test results today showed that his liver enzymes were about the same (76,68 instead of 73,73) and that his “toxic metabolytes” levels had gone back up this week. Last week’s drop is still an encouraging sign, his liver enzymes have been coming down for a couple of weeks now, and other things they’re watching (neutrophils, lymphocytes…) are all looking pretty good, so the big picture is still very encouraging. But our short-term goal of coming home as a family doesn’t look like it’s going to happen.

If you pray, just keep praying and we’ll trust God with His timing.

Josh is his same old joyful, fun-loving, resiliant self.  Naturally, he was a little disappointed with today’s news, but his Grandpa always said “don’t get your dauber down” and I’m not sure he ever has. He sure is fun to be around. :) I’ll see if I can get him to do another video update one of these days.

Hope everyone has a great holiday weekend. Maybe we can ask the nurse for a tent and make s’mores in the microwave. ;)

Blessings,

Clark (Julie, Josh & Timmy we think:)

Good Reports

Sunday, May 23rd, 2010

Sorry to be so long in updating the blog. I’ve sent a couple updates by email that didn’t make the blog. If you’re not on our email list and want to be, just let us know.

We had a good week with test results. While Tuesday didn’t show much change in neutrophils (they’re low, but OK), it did see his liver enzymes drop considerably, from over 100 to down in the 80-85 range. Then Friday they dropped even further (75-80) AND the “toxic metabolytes” dropped for the first time since we removed his medicine. This is a good sign, indicating that his immune system is working to supress them. There also was an increase in one of the “B Cell” measurements that the doc told me he couldn’t explain. :) So definitely a good report week. Yeah!

Now our big challenge looks to be getting on the same page with the docs about our departure date. First of all, we need the numbers to continue to improve (or just hold in some cases). We’ll have tests again this Tuesday and Friday and Julie is scheduled to fly home to Wisconsin the following Wednesday. We’re holding on to hope (however slim) that we could all go home together. I suspect that if the numbers continue to improve this week that we’ll have a conversation on Friday. I don’t think they’re going to be wild about letting Josh go that quickly, but I also expect that if we don’t speak up at some point, Josh and I would probably be out here for another month or more. Joshua’s health has to come first of course, but unless the docs are adamant that he not leave, we will all be home for his brother’s birth.

So for you praying types, thank God for good reports, pray for more like them, pray for discernment about if/when it may be time to say “sorry docs, but we’re outta here” and keep praying for Julie and baby #2 of course. :)

Josh continues to be his unflappable self. It really is remarkable how well he is handling this lengthy confinement. He never complains and almost always seems to be enjoying himself. I asked him to write something for the blog, and here’s what he wrote:

puzzledHi everyone, 

I am having a great time and simply can’t wait to get home! I’m going to be taking a trip with my dad for a week to Kentucky to do some stuff! Actually alot of stuff. I’m Going to Mammoth cave, a water park, a zoo etc. I also really miss my cats too!

Can’t wait to see you all soon,

Josh

 

Julie is fine and looking forward to being home for the last month of her pregnancy. I’m enjoying our “adventure” with the exception of my ongoing sleeping troubles. I think I managed 7-8 hours last night, the only problem was it took me 12 hours to get it.

I’m skipping most of the details on things for the sake of brevity. If anyone wants to hear more about what’s going on out here, just email, call or Skype us. If you need our Skype names, just email.

Many Blessings,

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

Reporting Live, I’m Joshua Osborn

Monday, May 10th, 2010

Josh gives a tour of the room he’s been in for the last 7 weeks at NIH…

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

Thursday, May 6th, 2010

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.

Computer

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…

Blessings,

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