Now An Update ...

We went to the pulmonologist yesterday and it looks like we are on our way to visit more specialists.

First some really good news: it looks like the insurance company is putting through an approval for Jayden to get the Synagis shots throughout the winter (once a month for 6 months). It's casually referred to as the RSV vaccine and may help keep him healthier. It doesn't mean he can't get RSV, but may be able to build up antibodies ahead of time to help fight it. It is extremely difficult to get approved for and very pricey so the only way we can get it for him is if insurance covers it. The nurse in charge of it has been working on getting him approved for several months now.

The pulmonologist was nice and gave us some interesting insights/opinions. He said he's not convinced he has asthma, but thinks it is a secondary symptom of other issues. I could give you a long explanation of all we talked about, but I'm just going to sum it up here, so if you want it call or email me. We will be going to see a pediatric GI and the geneticist.

We are also looking into a genetic disorder that while rare, actually encompasses all of his problems. It presents itself similar to cystic fibrosis, but doesn't affect the lungs in the same way and the kids test negative on the sweat test. The name is Shwachman-Diamond Syndrome.

We don't want him to have any issues, but he does and right now we are just spending a lot of time treating what seems to be the symptoms, but not getting down to the problems. The long-term effects of some of his medicines can cause problems and we want to help him develop how he is supposed to.

One of the biggest blessings is that we are located so close to CHOP and they see a lot of kids with this and similar problems on a regular basis so they are very equipped to handle it. Hopefully somewhere along the line we can come to a conclusion and not keep adding specialists:).

As always, continued prayers are appreciated, especially that we can help him by not sticking him through a million more tests or procedures.