Samren, in February 2003. He had an NG tube for 3 months before going to a g-tube, and then on to a mickey-button
Little man sporting his 3/6 size Easter outfit at 18 months old! We took out his NG tube for Easter pics. =-)
This is what mickey button looks like. Really no big deal. You can see Samren's fat little tummy in this pic. =-)
Today has been a much better day. I feel like we're on the far end of a weather front, where the sun has started to peek through the clouds again.
First Praise: Bright is pooping! I know, I know..weird reason to celebrate. But I am happy for HIM! The best part is that he is going in the potty EVERY SINGLE TIME! I am just so happy for him. He is so proud of himself. He has soft stool, but not diarrhea and no pain from the miralax (so far). It would be amazing to me if after all this time his poopy problems were solved so easily. We'll see.
Second Praise: A day of rest! It was so nice to go nowhere today. To sleep as long as we wanted to sleep, to lay around and cuddle. Eric is bored out of his mind, but the rest of us were very content to do nothing all day!
No trauma today: Last night we planned to go ahead and try to give Kendi meds this morning. But then morning came. It was 7:30 and she was sleeping so soundly (in our room). She looked so beautiful, breathing in, breathing out. The "doctor's orders" were on my side. She said to stop meds if she threw up again. So when it came down to it I just could not wake her up in order to force the medications down her throat. I just couldn't. So Kendi got a day of rest in a different way than the rest of us. =-) She was so loving and cuddly today. At one point she saw the medicine on the counter and said, "Mommy? No medicine?" No medicine Kendi. Not today. She said, "Tank oo mama. Tank oo." Your welcome Kendi.
Hope for Tomorrow: I wrote to our HIV Nurse, Nancy, to let her know that Kendi still wasn't tolerating the meds. What a treasure this woman is. She wrote back to me tonight--on a Sunday night, before a week when she will be taking off from work. She told me how to get through to Dr. Stovall tomorrow. And she said that Dr. Stovall will likely recommend a g-tube. When I read her message I honestly started crying. Crying with relief. If you've always been able to meet your child's basic needs for food or water or medicine, maybe it would sound crazy to you that I would be relieved at the thought of a g-tube. But if you've ever had to live through the stress of watching your child suffer to get those basic necessities, then you understand. A g-tube (or "button" as we'll start to call it) is freedom. It is freedom from that stress and trauma that a child would otherwise go through to stay alive. It's being able to sleep at night, knowing that your baby is going to LIVE.
Our last week: This is our last week before Eric goes back to work. Hard to believe that we're already to this point! Eric cannot wait to get back. The kids and I? We love having him around during the day, so aren't in too much of a hurry to kick him back to work.
This has certainly been a life-changing month. I really do feel like we're through the thick of it now. Always darkest before the dawn, right? =-)