Well I have heard back from the immunologist. Now the plan is to do the IV gammaglobulin monthly through spring of 2009!!! I am so discouraged and overwhelmed. After a year of him being sick for what seems like all of the time, I thought the fix would be done by next summer. I thought we would just have one more year of craziness and that would be it. But unfortunately for us that is not the case:( They had also done some other blood work and Sam's liver function tests were elevated a few weeks ago, then they came back down to normal levels and then now they are higher than they had been. I just wish I knew what was ultimately going on with this little guy. Although we now have a plan for the immunolgy stuff now there is this liver problem that we now have to deal with.
On a happier note he is walking everywhere!!! He walks like frankenstein with his arms straight out in front of him to help his balance. It is so cute. He found a pacifier in his toy box today and sucked and chewed on it for most of the day!!! It was so funny, he never took a pacifier taht good but now it was like a fun toy for him.
Tomorrow we have the appointment with the gastrointerologist. I am not really sure what will happen at that appointment. Maybe he will have some insight into all of the liver stuff.
Sorry to hear the news from immunology. It must be so hard and overwhelming to think about Sam having to undergo these procedures for such a long time. I too wish there was a way to figure out WHY he is having these issues...and now with the liver problems...like I've said before it's a mystery for Dr. House to solve. I hope you get some answers, and I hope Sam begins to have some LONG stretches of illness-free days.
ReplyDeletep.s. SOOOOO exciting to see him WALKING all over the place! He is sooo cute!
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