Friday, March 16, 2007

Play Time

We had another play date today. We went to Jamaica Plain to see Max and Christian. They both are doing very well.

Ellie managed to charm them both and didn't make them cry nearly as much this time. Both of these little boys are tough little troupers that have had to handle a lot for their age.

Max is the boy all the way to the right in the picture. He is 9 months old and from Bolder Colorado. Yea Colorado! He was born with Hirchsprung's disease which has left him with a very short gut. He is here in Boston to get on Omegaven and so far, it's working! All of the numbers that determine liver health have started to head in the right direction. You can tell he is getting better because he is looking better and getting stronger. He wowed us all by showing off his standing legs today.

You can't really tell so much from this picture but, he used to have a strong yellow tint to his skin. This is the result of high levels of bilirubin in the system due to liver damage from the TPN. As Omegaven does it's thing and his liver gets better and better the yellow color will slowly disappear.

Christian is now 3 months post transplant and is doing great. He is doing so well that they are going to send him home to New Jersey in the beginning of April. This is a huge deal because most children are not even out of the hospital 3 months after transplant much less allowed to leave the state. He is a tough little boy that loves to bash things with his head. He and Ellie had matching shiners a few weeks ago, to bad we didn't get a picture. He is such a different kid than the little boy that we met back in August. He is now a strong, solid little boy that likes to point to interesting things and say "WOW".

This is a picture of their play date back in February. I just love the picture so much I had to post it. Colleen aptly titled it "I don't wanna play with girls."

But I think this picture is better and I would like to title it "AW Ellie Farted!"

We have only had play dates with Christian and Max because Ellie's immune system is not as strong as a typical child's. Your intestines are one of the first defenses your body has against bugs from the outside world. If you don't have all of them then your immune system is not as strong. So, we have to be very careful of who she has contact with and let's face it, most kids are snotty messes. So we only have play dates with other children who have medical issues. Because we know that their parents will be very aware of sickness and if they say their kid is healthy, then you know they are.

We are going to miss Christian and his folks when they go home, but at the same time are very excited to see them go. It is a big step going home, Colleen, Christian's mom, has been out here taking care of Christian mostly by her self as Christian's dad works (some one has to make the money and keep the Blue Cross) back in New Jersey. It will be a nice and well deserved break for Colleen who has done an amazing job and her strength still amazes me.

Max will be here for a while because even though the Omegaven is working the doctors in Denver will not let him come home on it. Because it is so new many doctors are hesitant to let their patients use it until it is tested and approved by the FDA. This is heart breaking because of how many kids are out there with livers that are just getting worse and worse. Many doctors, even some here in Boston, are not on board but, that number is dwindling rapidly. Also some of the doctors here that are not on board with Omegaven may have made that choice due to politics, not due to the effectiveness of the drug. And that is a true shame.

Because all short gut babies should look like this.

If you are a parent of a short gut child or know some one that should be on Omegaven, please contact Dr Mark Puder at Children's Hospital in Boston. His contact information is also listed in the information at the top right side of the blog.