Days Gone By
July 27th, 2010All I can say is “wow’! Can’t believe it’s been well over a month since Timothy was born and since our last post. Here’s some of the highlights of the few weeks.
Timothy
Our little “Timmy” is already 5+ weeks old and doing great. He seems to be responding well to the medicine for his immune condition and he is putting on weight at an impressive pace. Born at a “robust” 8 lbs 3 oz, as of this morning’s weigh-in, he’s already put on 3 lbs (app. 11-3). So we’re very pleased with that. We’re still keeping him fairly isolated to be safe and probably will continue to do that for another month or two. Then if the docs are happy with his immune studies, we’ll probably relax that a bit.
He seems to have some issues with gas, but other than that, he’s a very beautiful, content little guy. He’s still a bit nocturnal at this point, so Julie and I are switching off on who stays up late and who gets up early. Both of us are pretty tired (we ARE in our forties you know 
), but it’s a small price to pay to have another little bundle of joy around. Timmy’s arrival was very much a dream come true for Julie and she is relishing life as a newborn’s mother.
We’re still planning on entering Timmy in the Gene Therapy program at NIH as soon as we are able. He has to be a minimum of 22 lbs before starting, so we’re probably looking at February or March at the earliest. Josh probably wasn’t 20 lbs until 18-24 months, so it’s hard to know what to expect from his brother.
Joshua
As you know from our “Mammoth Cave Adventure”, Josh hit the ground running upon his return to Wisconsin and pretty much hasn’t stopped. After Timmy was born, Julie suggested we pay his cousin Rebekah a visit at their cabin in Hayward over the July 4th weekend. Taking Timmy wasn’t a good idea of course, so it was just Josh & I for the extended weekend. Other than a nasty case of “Duck Itch” on my feet, it was a very pleasurable weekend. Since then, Josh has spent most of his time either inviting friends over or going to their house. He’s very excited to have a brother and has already been a great help to Julie & I with him, but Timmy hasn’t quite reached “playmate” age yet. 
Joshua’s health continues to be very good. They have been getting blood draws from him weekly and the results continue to support the decision to remove his PegADA medicine. His liver enzymes have been good several weeks in a row now and while his “toxic metabolytes” continue to fluctuate a bit, they’re definitely better and moving in the right direction. Earlier this month he and I returned to NIH for a couple days for a follow-up visit. After our appointments, I took him on a little adventure on the Metro, going north from NIH just a couple of stops for our first ever visit to a “Dave & Busters”. Oh my gosh, seriously, it’s like Chuck-E-Cheese, Las Vegas style. We both had great fun playing games and Joshua was thrilled with the prizes he was able to bring home. I’m glad they don’t have a “Dave & Busters” in Madison, though I saw they just opened one in Milwaukee so I suppose it’s just a matter of time.
As well as Josh is doing, his immune system is not fully functioning. He has never had any significant B-Cell function 
and his lymphocyte numbers and function could be better. As you may know, Josh had a bone marrow transplant at Duke in 1999. For about 3 years it looked like it had worked and then suddenly in March of 2002, it seemingly failed and for the past 7+ years, he’s been on the PegADA medicine. Then in March of this year, just before beginning Gene Therapy at NIH, we were all surprised to find that somewhat inexplicably, the maternal cells from mom had started to work again. Because of this discovery and because Josh has fared well after his NIH isolation and the removal of his medicine, AND because of the aforementioned room for impreovement in his immune system, Josh’s doctor at Duke believes that he could benefit from receiving a BOOSTER bone marrow transplant, again using his mom as a donor.
The “booster” BMT is pretty much what it sounds like. They harvest more of mom’s cells and give them to Josh (via infusion) in the hopes of adding function to what he already has. It’s less complicated than a full-fledged BMT and it sounds like it only requires about a month at Duke this time around (we were there for 5 months in 1999). SO…
We are tentatively scheduled to arrive at Duke (Durham, NC) on September 6th and the harvest and transplant would 
take place on September 23rd. In addition to the displacement issues, we’ll also have the issue of Joshua missing his first month of 6th grade. Not ideal, but in the grand scheme of things, it’s not a tough decision. We’re hoping to have someone at Duke that can help keep up with school like they had at NIH.
Speaking of NIH, Josh & I will return there for another follow up on August 11th. After that. we’re not sure how they’ll handle NIH follow-ups for Josh since he will be getting treatment at Duke in September. NIH would also like to see Timmy at 3 months. Not sure if Julie would do that while we’re at Duke or if they will wait until closer to 4 months in October. As usual, there is never a dull moment logistically.
Mom & Dad
As mentioned before, Julie and I are tired and happy. Timmy is really a mega-blessing to all of us. We continue to try to go with the flow with all the logistical, displacement, insurance, financial… issues and challenges. God has given us a tremendous support system in himself and in an incredible network of family and friends. Thanks so much to all of you who have supported us in any way through this season of our lives.
With the displacement coming in September and another 4-6 month stint at NIH on the horizon, employment issues continue to be a significant challenge. Ideal employment for me would be computer based work that I could do from anywhere, so if anyone has any ideas or leads for me in that regard, please send them my way.
Many, MANY thanks again from the Osborn’s!
Clark, Julie, Josh & Timmy
I haven’t had time to post on day 5 of Joshua’s Mammoth Cave 2010 Adventure because we got a call last night at 1:30 AM EST in Indianapolis that mom’s water broke and she was on her way to the hospital. So we packed up and headed home, arriving at St Mary’s at about 6:00 AM. Labor with Josh was only about 5 1/2 hours, so we weren’t sure if we would make it in time. But this time around, things are moving a lot slower and as of 4:00 PM Saturday, Timmy hadn’t graced us with his presence yet. Sounds like it will be within the hour though.
After a fine night of sleep and a MOST excellent breakfast, we headed out Thursday AM for Mammoth Cave National Park. We got there over an hour before our 10:30 tour time just to make sure we had the tickets I ordered online the night before. After getting the tickets quickly and without a problem, we did some souvenir shopping in the gift shop of the Mammoth Cave Hotel.
I visited Mammoth Cave in April of 1971 (when I was 7), but the only thing I had just a vague memory of was the Snowball Lunch room which was about an hour into our tour (and about 2 hours after our big breakfast). Other than the spectacular finish at Niagara, I think the highlight of our tour was a resting spot where the guides demonstrated what total darkness and total silence was like. It really was a “wow” moment and unlike anything I had experienced before.
When they found him on the trail, he was banging two rocks together to make noise. He said it wasn’t the total darkness that bothered him so much as the total silence.
We got back to the visitor center right at 3:00 and after a couple stops, found our way back to Horse Cave and our Hampton Inn where after a late lunch, we spent most of the rest of the evening in the pool/pool area. Got the boys to bed early since we were going to lose an hour on Friday going back to Indy and the “Carribean Cove” waterpark.
Wednesday was Day 3 of our adventure and we checked out of the motel and headed to the Indianapolis Zoo. We tried (to no avail) to get there early since the forecast was for a lot of sun and 86. As it turned out, thanks to a nice breeze, a lot of shady areas and lots of stuff to see indoors, it really didn’t matter.
We left the zoo around 2:30 to head out for Kentucky and Mammoth Cave. Other than a slight delay in Louisville, the trip went very smoothly and we arrived just before 6:00… or so we thought. Turns out this part of KY is on Central Time, so it was actually only 5. It was nice to pick up the extra hour, though since we’re headed back to Indy on Friday, we’ll lose it again.
After a fine continental breakfast at our motel, it was off to the Children’s Museum of Indianapolis. The museum is billed as one of the largest in the world and it did not disappoint. At least not much anyway. CMI boasts 4 different levels of attractions from my favorite the “Dinosphere” on the lower level to the “Science Works Science Port” on level 4. One of the main attractions for the boys was a “Star Wars: The Clone Wars” exhibit that proved to be a little less than we were all expecting. But all the other things to do and see there more than made up for that and we would highly recommend the stop for anyone with kids driving this way or even for a 2-3 days get away. We made it to Indy through Chicago in right around 5 hours.
As most of you know by now, after 81 days in an isolation room at NIH, last Friday Joshua got sprung! Then on Saturday, he and I flew back to Madison. Well, actually we flew to Chicago, had our flight cancelled and took the bus back to Madison, but home is home.