jonah update

This will be short because I am super tired and I'm determined to be in bed by 10 tonight. I promise I'll do a birthday party post (or several) soon, but I'm sorting through and editing four different sets of photos (with my professional ones my friend Jenn did still to come), and it's taking a LONG time. So please bear with me. It was a GREAT party and it will certainly get it's bloggy due. :)

We took Jonah for his one year check-up yesterday. He had to get four shots and a big thing of blood drawn out of his arm. He cried but recovered quickly. Sweet Boy. He's all smiles until the nurse shows up with those needles. I think he's starting to learn. Jonah's growth looks great. He's between the 25th and 50th % for weight (hard to get an exact weight with all those bandages) and the 60th % for height and head circumference. He continues to remain right on his curve. It really is AMAZING that he is growing as well as he without a g-tube. That is certainly the JEB exception.

Two things are on my mind heavily tonight, and I ask that you remember them in your prayers for Jonah.

- I have suspected that Jonah's toes are beginning to web for the last several weeks, and Dr. B confirmed it yesterday. His second and third toes on both feet are beginning to web together (the left foot is a lot worse) and they are also beginning to web to the bottom of his foot. Because there is not much space left to wrap him to where we can put something between his toes and the bottom of his foot, we've sort of been forced into leaving his toes unwrapped. I'm definitely nervous about it, but he only got one big blister and one small one today. I am pleased with that. Toe and feet blisters are extremely hard to drain because Jonah is very ticklish and just annoyed in general with somebody messing with his feet. I'm not excited by the idea of having lots of blisters there - for Jonah or myself. Please pray for protection of his feet and that his webbing is not irreparable. If nothing else, please pray that us leaving them unwrapped will prevent further damage. (Cute little Jonah toes can be seen here.)

- Jonah is still on a bottle and showing no interest in a cup. He does not hold his own bottle or feed himself. Therefore, when you give him a cup, he doesn't really know what to do with it. He can get it to his lips, but if he puts it to his mouth at all, it's just to chew the tip. (I have tried a soft tip transition cup and a straw cup... he has no idea what to do with a straw.) He will have to be on some sort of formula or liquid nutrition until he's two (at least), but I would love to be able to make the move to a cup in the next few months - one, because I already worry about his teeth and don't love the idea of prolonged bottle feedings, two, because I think he would like it more, three, because I think he would open up more to solids if the liquid was a complement to the meal and not the meal itself, and four because it is a struggle to feed him, takes many hours out of our day, and I want my life back. Just tryin' to keep it real.

Anyway, those two things (especially the feet thing) are our current EB related issues (besides the obvious always ones, of course), and we would appreciate any praying you could send our way.

We have a dermatologist appointment and Jonah's first dentist appointment scheduled for April 15th. I would have liked them earlier but I had to schedule them when I could get them both on the same day since they are both in Chapel Hill. I'll be emailing Jonah's dermatologist about the feet issues, but we won't be seen until April. I don't know if we'll be referred to a plastic surgeon or what they will decide. I don't even want to think about what all that will mean.

We'll just take it one day at a time.