This little linky reminds me to check in on him and pray for him each day.
I seem to "meet" these wonderful people through my blogging. I feel as though I know this family. I hurt for them. I care for them. I pray for them, and now I am asking you to pray as well.
Mom and Dad, Patrice and Matt, with Jonah
Looks like a nice day to be outside-
Meet Patrice, Jonah's mama. She write on her blog: http://patriceandmattwilliams.blogspot.com/
"I am a child of God, a wife to a super great guy, and a mother to the two most beautiful little boys. Our first, Gabe, was stillborn at 37 weeks. He was only here with us a short time, but we treasure every single moment. On 2-27-09, I gave birth to our second son, Jonah, who was born with an extremely rare genetic skin disorder called Epidermolysis Bullosa. Jonah is now at home after 32 long days in the NICU uncertain of his future. He has been diagnosed with Junctional EB, which can have a good long-term prognosis or can be lethal in the first year of life. The experts are fairly confident Jonah has the less severe form, although the biopsies were inconclusive. He faces a life of painful blisters, hair, nail, and major teeth issues, as well as the possibility of respiratory involvement. Jonah is literally point five in a million. We suspect EB is the cause of Gabe's death. We know that no matter what happens with Jonah, God will be glorified. We can't wait to see Gabe in Heaven and can't wait for Jonah to meet his big brother a long, long, long time from now after he's old and gray and lived a long, full life. Please pray for a miracle for Jonah. We are."
One of her posts really affected me:
I'm praying my heart out that something changes and fast. I do not want a g-tube, but I have to think about what's best for Jonah. I'm out of ideas. I have nothing left. All I know to do is pray.
I know many EB kids have g-tubes. But I also know that a g-tube means surgery. I know that a g-tube means yet another blistering sore on my child. I know that it is yet another site that will infect easily. And it scares me.
I'm tired of having to make these hard decisions. I'm tired of him (and me) having to struggle at every feeding. I'm tired of feeling scared that whatever doctor has to do this operation (if it comes to it) may not handle him right or might not take the right precautions. I'm afraid someone will mess up, and Jonah will pay the price.
I've been in tears tonight over all this. I'm out of ideas. I don't want advice. I don't want comparisons. Jonah just needs prayer. I feel that it's getting out of control rather quickly. We're going to watch what happens over the next week or so, and if things don't get better, we'll have to start talking to his doctors to discuss our options.
Maybe this sounds rash to some of you, but the problem with EB is that once a child falls behind in weight/nutrition, it's almost impossible to get him caught up. So how far do you let it go? The key to EB is nutrition. And unfortunately, the key to nutrition is the g-tube.
Please pray for Jonah. I keep begging God to let him be able to eat. I can't believe that I'm having to pray for that. I'm having to ask God that my child be able to eat... who should have to pray that? I'm just so tired. I've tried everything. I don't know what else to do.
Please join me in sending as many prayers as we can for Jonah. Pass the word to all the prayer warriors you know. Add his link to your site. Our Father knows. He hears.
Jonah, Your miracle is coming!!!
These verses are taken from Jonah's website as well-
He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the LORD, "He is my refuge and my fortress, my God, in whom I trust..." He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart... For he will command his angels concerning you to guard you in all your ways... "Because he loves me," says the LORD, "I will rescue him; I will protect him, for he acknowledges my name. - Psalm 91:1-2, 4, 11, 14