And just to clear things up for those of you who have just begun reading or don't know much about EB - You may think I'm crazy for talking g-tube for a (previously) 17 lb 11 oz eight-month-old. And if he were a "normal" baby, we would be. But the problem is not how much he weighs. The problem is with his growth curve. Any time he starts falling off his growth curve (and a month without gaining any weight was doing that), we have issues. There's a lot to consider with EB, but nutrition is #2 (I consider #1 to be infection). Like I said in an earlier post, once EB kids get behind, it's a real struggle getting them caught up. They need MANY more calories than "healthy" kids, and their bodies require lots of EXTRA to heal the blisters they do have and to regenerate new skin. Healing takes a lot out of you.
So... I hope that explains the urgency of the last couple weeks. And there is still a great chance that we are not out of the woods. I don't think this is the last time we'll be dealing with this (although God can do anything, so we wait in hopeful expectation), as there is so much to consider. G-tubes are good for so many reasons for EB kids - adequate nutrition, a happy alternative to shoving lots of meds and vitamins down your kid's throat, and one I've thought about a lot: a way to nourish them if they fall down and hit their lips or mouth. Can you imagine? Big blisters, days of healing, and the inability to eat. I can see why many EB parents get them. Actually, the idea of the g-tube itself sounds pretty good... it's just the hospital stay, the surgery, and mostly the intubation that scare the you know what out of me.
But anyway, for today I am SO happy, SO grateful, SO completely amazed at what God has done over this last week. EIGHT OUNCES!!! Wow! The most he's ever gained in a week is six ounces. And I just love you guys to pieces. Ninety-eight comments on a post about my kid gaining eight ounces! I can't say enough about what a great support you are to us, and to me especially. Knowing that Jonah is being prayed for all over the country and the world gives us so much hope and strength. We feel so blessed that God has given us the gift of YOU! Again and again I ask for you to pray VERY specifically, and again and again, God says, "Okay. Since SO MANY of you asked, I'll do it." You can just back and read my daily prayer requests from the NICU and see directly how God answered each and every prayer. Isn't that amazing? So many times God answers prayers or works in our life, and either we're too busy and miss it, we chalk it up to coincidence, or we realize it but then forget about it a week later. I am so BLESSED to have this blog. Not only do I have a record of Jonah's life and medical journey, but most importantly, I have a written record of God's miracles in his life... in our lives. That's just so neat to me. Sorry, I know I'm rambling. I'm just so excited for the day when Jonah can read (and truly understand) where he was, how far he's come, and the many, many things God has done for him.
And maybe by that time, he'll be completely healed.
Faith as a mustard seed...
It's coming, friends. Just you wait and see.
(My friend, Katie (Quinn's Mom), took this photo of Jonah and me on the hayride at The Pumpkin Patch. I just had to share it. She did such a good job. Look at that sweet face!)