Once again we need your prayers! Prayers for comfort and for peace...
Ale​x's liver biopsy results came back and it wasn't the news we had hoped for. The Mitochondri​a in Alex's liver are "grossly abnormal". The increase in liver enzymes we are seeing is because the mitochondri​a are not functioning properly. The concern is not for now, but for the future. At some point the function cold deteriorate to the point of his liver failing.

It is so hard to look at my sweet, smiling smart little boy and image what this disease is doing to him on the inside. The picture on the outside and the truth of what is transpiring in his little body don't match.

And so we march, one foot in front of the other and pray for miracles. Please pray with us.
Ali

We are getting back in the swing of things at home! Alex has been kind of up and down in how he is feeling. We have been trying to increase his feeds back up to his goal rate because his weight has once again fallen off the growth chart. His goal has always been 50 cc/hr. He feels great at 45 cc/hr. In the hospital we had increased to 46 and he was holding his own. The plan was to try and increase him by one cc/wk until we got up to 50. Well yesterday we went up to 47 and immediately he began to feel a difference. He complained last night and again this morning. He also doubled the amount of bile output from his Gtube. So I backed him down to 46.
We ran labs yesterday and they look pretty good. While I am hopeful they are correct a few values don't seem to line up with symptoms I am seeing. So I'm not sure I trust them.
We are still anxiously waiting on results from the liver biopsy. They expected results the next day and it has been a week so I am slightly frustrated.
Alex had a great time on July 4th. He really didn't care much about the fireworks, but his friends and the glowsticks were a huge hit! Whatever, makes you happy, right?
Pleas​e pray for results and also for Brucey's job search. He had an interview for the perfect job and is anxiously waiting for an offer!
Thank​s for all the love and prayers,
Ali

Happy 4th of July!!!

Alex is doing MUCH better today! He slept really well last night and took a 4 1/2 hour nap today. He is raring to go for fireworks tonight. For the 2nd year in a row, we will enjoy fireworks with our playgroup friends. As you know, Alex LOVES his friends and it makes the night extra special. We are so thankful we are home in time to enjoy tonight. other then that we will run labs on Monday and anxiously await the biopsy results.
Tha​nk you for your always faithful support and prayers.
Ali​