Almost Ready!

Just because I haven't updated in several days doesn't mean that nothing is happening.

We have been working all week lining up our forces. I have spent the better part of the week talking to doctors, nurses, lawyers, state representatives, and others. I have been gathering the information needed to argue Landon's case. We are almost ready. Next week I will be presenting this information to the people we think can make a difference.

Landon seems to have had a good week. Kathy and I visited with him on Thursday afternoon. He stayed awake more than he has been. We enjoyed our visit, with Landon. Ezekiel came home with us to get ready to go to Cub Scout camp.

More good news, we got Jeremiah's computer fixed this week. I picked it up today and will be getting it to Jeremiah this weekend. He can then begin to update the blog and keep us up to date on Landon's treatment.

Now for the bad news. The liver test from today were bad. Landon's billirubin is still high and his liver enzyme levels are very high. When cells in the liver are damaged they release certain enzymes that can be measured in the blood. Landon's enzyme levels are more than four times normal and have gone up every week. This indicates that more and more of his liver is being damaged every week. This has been an emotional week. We believe with, all our hearts, that this liver damage could be stopped if Landon is allowed to go to Boston for treatment. It's just so hard to know that there is a treatment out there that could save Landon's life and we can't get it, yet.

We need to stop focusing of the fact that Medicaid has blocked us from taking Landon to Boston for the treatments. We need to begin visualizing Landon going to Boston. We need to see him getting on that airplane and taking off. We need to see him resting in a bed at Children's Boston. We need to see that bottle of white liquid (Omegaven) that some families call "white gold" entering Landon's blood stream and soothing his damaged liver, unblocking the ducts and allowing the fluids to flow through his liver. We need to see that beautiful pink color returning to his face and the yellow disappearing. If we can visualize this in our prayers and dreams then surely it will become a reality. Let us use this power, that we all have within us, to make it happen.

EJ