What started it all...{part 8} "Update on Gavin"

{I copied and pasted these entries from our family blog way back when I originally posted them!}

Its been awhile since I directly addressed how Gavin is doing since we came home from the hospital. I've learned SOOOO much more about Alpha-1, and the more I learn, the less scared I am. The risks are still there, yes, but now I understand them a lot more.

He goes to see his Gastroentologist once a month, plus they do weight checks once a week, and they do blood tests to monitor his liver once a month. He had some fibrosis (liver scarring) in his liver biopsy, so that puts him a little closer to a liver transplant, but its not a definite at all at this point. There was no cirrhosis (liver failure), so that was a good thing! His blood work the last few months has been consistently elevated (not a good thing) and seems to be getting "worse".

The results of the blood work are not exactly straightforward though...they watch his liver proteins, cholesterol, coagulation, enzymes, and whole other bunch of things. (which I'm pretty good at reading now...I know all the abbreviations, how they affect him, etc) However, some people with liver damage/failure don't show changes, while others do. The numbers can spike one month, then go down the next. Being sick can change the numbers as well. And its not an exact science even when it is accurate.

Its more of a "see the forest through the trees" thing, where you have to look at months and months of blood work combined with everything else to really notice a trend. Month to month changes don't necessarily mean anything.

This is pretty frustrating for me (and probably for doctors, too) because there are no exact answers. They can't tell me "this means THIS and that means THAT". So its basically just playing "hurry up and wait" at this point, and will most likely stay this way for some months...just watching to see what develops.

We went to an education day for Alpha-1 last weekend and it was awesome! We learned SO much! Plus, it was just nice to talk to other people who "get it" and can talk about GTTs and PTTs like its the most normal topic in the world. We were the only people there with an Alpha-1 kid, so that was kind of a bummer. But it also got us a LOT of attention. They've never had anyone there with a liver affected baby. So most of the information and talks were directed at the older people with lung affected Alpha-1, but it was still interesting to listen to. Andre, my mom and I all got tested, too, so we'll have our results within the next month. I'm curious to see what they'll say.

The support group leader also mentioned that we might be able to get a scholarship to help pay for a trip to the National Convention this year which is in St Louis, Missouri. I *really* hope this works out because I would LOVE to meet some other parents with Alpha-1 kids. They said there are usually about 40 other families there, plus they have speakers *just* for the liver affected Alphas.

We are also signing Gavin up for a clinical study that will try to find out why Alpha-1 affects the liver in some children, but not at all in others. They will be studying 250 children around the US, and the nearest hospital to us is in Denver, Colorado. But since Andre's parents just moved outside of Denver, we'll be able to visit there at least once a year for him to be able to participate. (it runs once a year, for 5 years). They will draw his blood, take urine samples and vitals, record family history, etc. I'm very excited that this research is being done, and hopefully they will be able to find something new and useful.

So that is where we are at. I have so much information about Alpha-1 that I just want to shout from the rooftops, but I'll save that for another post. ;)