I'm Back!! I haven't posted anything in a very long time. Ben has been doing a wonderful job of keeping this updated. We have had a couple unexpected hospital stays and I'm just so tired. We are home and Lukey is doing great. Tomorrow we go back to GUH for his transplant appointment and then he will have his last chemo for this round on Monday. Then just one more round to go...I am counting down. I just pray he stays healthy enough to be at home. His counts will probably start dropping a lot now, so we have to be extra careful.
I feel really sorry for Levi sometimes. I'm sure the only thing he will remember about this later on is the incessant hand washing. He probably goes to bed hearing "have you washed your hands?" "Levi, wash your hands". I bet he dreams about it. Poor guy. As a mother I am torn by guilt for one and worry for the other. It's a tough spot to be in. I don't even have the time to think about being pregnant, but my body reminds me. More and more it reminds me.
I had his meds adjusted so the start at 6am instead of 5 and end at 10pm instead of 11. It's kinda like daylight savings...I feel like I gained an extra hour. If I didn't have to get up to give him more feeds and change his diaper, I would actually be getting more sleep. I could easily cross the line and become an insane person. The Lord just helps me hold it all together. I'm so tired. My baby is the one who has to go through "hell". I'm not cussing there...I'm serious. He has been through more in 6 months than most people will in their entire life. He is so happy too. I really should not complain.
We are working on getting Lukey to eat and drink by mouth again. We met with a speech therapist while we were in last time. She gave us some good tips. Some kids who have been off food for 6 months or more take a long time to start eating again. She said they start to vomit if you even go near their mouths. Lukey is not like that. He still puts everything in his mouth. He ate a little baby cereal today and didn't throw up. The bottle is history though. She says he most likely won't go back to it. We are trying the cup. Sippy cup and straw cup, we'll see which one he takes to. Levi went from bottle to straw. It's a task. We want him off the feeding tube. It's wonderful for giving meds, but his poor little nose has been bleeding where the tube goes in and the tape really hurts his face.
I talked to my brother on the phone today. He might need to make another trip here soon. He is still having a lot of pain and the Dr said that all the fluid that has built up around his liver might be the culprit. Unfortunately he has to come all the way to Georgetown to have it drained. Please say a prayer for Michael, he is our hero and deserves to feel well after all he has done for Lukey. We thank you for your continued support and prayers. The cross would be way too heavy to bear alone. Thank you all for lifting us up in prayer.