In three days we hit our "2 month" mark since transplant! Where has the time gone? I'm sorry I haven't been as diligent at keeping up the blog. You would think that I would have things under control by now and things would be slower-- not true!! In fact, it seems like life is crazier now than ever.
Matthew was scheduled to have a biopsy today. However, yesterday afternoon it was cancelled due to the start of Matthew's cold. I have no idea how I am going to keep Matthew healthy when his little brother is Luke! Luke is a germ magnet. He seems to pick up anything and everything he's been exposed to. The fact that he picks his nose, licks his hands, sucks on his shirt, etc etc. probably doesn't help his ability to stay healthy either. He is also my rebel. He puts on a mask when asked but as soon as I turn my back he "loses it" or "it falls off." Joshua is the opposite. He is the most diligent hand sanitizer and mask wearer in the family. One morning he reminded Luke that he needed to put on a mask and Luke exclaimed "I like germs! and I like to get sick!" If anybody has any ideas on how in the world I should deal with this obstacle I would welcome any ideas! In the meantime, we are holding our breath praying that Matthew can stay healthy enough to avoid another hospitalization. I think the 14 different anti-virals and antibiotics he is taking as a prophylaxis are definitely helping provide some defense so far.
Matthew still continues to struggle with eating. We have literally tried everything in the book to get him to eat and none of it works. I think for Matthew it's a control issue. He may not be able to control a lot of things in his life, but he can control what he puts in his mouth. Besides, he is taking a lot of nasty medicines and has developed a bad aversion to any food. He currently has an NG tube which we give him nutrition through at each meal and then continuously at night. Sometimes the NG tube's cap comes off and it acts as a suction emptying the contents of his stomach onto my floor. It's pretty gross. I just don't think NG tubes and active toddlers where meant to go together..... EVER! The transplant team is pushing towards having a GI doctor place a "G" tube in the near future. They think his eating issues will be long term and they favor a "G" tube over an NG tube for longer term use. Placing the tube will be an overnight procedure which should happen soon.
Other than that, Matthew is doing great!!! Seeing Matthew happy and playing makes every second of all of this worth it! Thanks so much to everybody for all your love and continued support. We are grateful for each and every one of you!