Archive for July, 2010

Days Gone By

Tuesday, July 27th, 2010

All 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.


 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.


SDC13151As 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 SDC13212and 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 SDC13185take 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