Jonah has struggled again today, but it was a slight improvement over yesterday. I'm not sure his total ounces, because Matt's feeding him now as I type this up in his nursery. I don't think he'll hit twenty. He has done better with solids today. He probably ate about two ounces total - apples, yogurt, peas, squash, sweet potatoes, more yogurt, mango. We tried it all. He actually opened his mouth about ten times for the yogurt which was so great! He hasn't opened his mouth for solids yet (except maybe a few isolated bites) until today. True, it was just for the yogurt, but it was something. I was so proud, I kept saying, "Good job, Buddy. You did it!" over and over again, and then he smiled at me, and then I started crying. I know he thinks I'm completely mental. Maybe I am. :)
I did speak with Dr. B, his pediatrician, today, and she agrees with me that things aren't looking good. The home health nurse came and weighed him again today, and it's the third week in a row that he hasn't gained weight. Dr. B is very concerned by this. He's definitely teething (two teeth coming in!), but she said it shouldn't be affecting his eating this much. She had a sense of urgency about her that just validated everything I've already been so concerned about. In a way, it was good to know we're on the same page. On the other hand, I wanted her to tell me how crazy I was, that he's doing great. I knew the truth before she said it though.
So where are we now?
She's working to get his GI appointment moved up (he wasn't scheduled for another one until Dec 2nd), and we're both trying to do research about EB kids and g-tubes. I'm going to email his dermatologist in Chapel Hill and see if there is a pediatric surgeon there who has done a g-tube on an EB child. The EB registry used to be in CH back in the day, so I'm hoping some of those docs will still be there. I think it would make me feel better if it was a surgeon who knew a little something about EB. If it were up to me, when the time came, we'd be on a plane to Cincinnati (where the EB clinic is) to get it done there, but there's no way I'd put Jonah on a plane right now. Talk about germs!
We're still hoping and praying for a miracle, but from talking to Dr. B on the phone today, I'd say we don't feel like we have much time left. I don't want to give it too many more weeks. We're on week four now of no weight gain, and I don't want him to keep falling behind.
He's already on 27 to 30 calorie per ounce formula, and he's still gushing every couple days, so I'm hesitant to put any more junk in his bottles. It seems his tummy can barely handle what we're already giving him.
So anyway, that's where we are. Thank you so much for praying. I attribute today's solids "success" to all the prayers going up for him. Please keep it up! I had moments of feeling peaceful about the whole g-tube thing today and moments of terror and crying. I know God is in control and that my plan isn't His, but it's still a
Matt's enjoying working on your questions, but only has time to answer a few at time. He said he should be able to finish them all up this weekend. He's trying to answer all of them, so it's taking a while. :)
Thank you for praying for Jonah. I don't know why it keeps surprising me how much he's loved and how many prayers are going up on his behalf, but I continue to be amazed. You'd think I'd be used to it by now, but nope. STILL COMPLETELY BLOWN AWAY.
Thank you from the bottom of our hearts.