Finally a day at home. No place to be but Eli's school at 3:20 to pick him up. No appointments; not even a call to a doctor's office or Walgreen's for a refill. A day like this doesn't happen often enough. The last 2 weeks have been especially hard. We've seen the insides of too many specialists' offices and have gotten to much new information, "possibilities", and "what ifs". It's been hard to deal with. The recap goes something like this:

The plastic surgeon's PA - the only one to give me good news...mostly. Judah's healing well from the surgery, and all his stitches have been removed. We just have to go back one more time to double check the incision on his left hand, because it's healing more slowly.

The endocrinologist - I don't even want to revisit this one. Adrenal Hypoplasia a possibility. Growth hormone injections a big possibility. Testosterone injections a possibility. A dysfunctional hypothalamus. Those are the "highlights".

The lab - Judah just happens to be as tough of a stick for draws as possible. The lab techs are really good, but only once has he had to be stuck just once. This time was no different. Check both arms, trying to find a vein for several minutes, stick one arm twice to try to get a draw, then stick his heel - twice - to get an obnoxious amount of blood for all the tests the endocrinologist needs to run.

Therapy - a definite highlight in the midst of all the doctor stuff. I love the 3 ladies that work with us. They oh and ah over Judah, making a big deal over the slightest bit of improvement! They encourage me in what I'm doing, and teach me new ways to help Judah. Just when I start feeling really discouraged about how far behind Judah is, these ladies come and by their attitudes and acceptance of Judah remind me that he's doing great for him, and that's all that matters. He's not any other baby. He's Judah, and he's doing just what he should be.

The pediatrician - 2 visits in 2 weeks. 11 lb. 2 oz., and 11 lb. 4 oz. nine days later. (I didn't mention to the nurse that he had a wet diaper.) Judah is bordering on "failure to thrive". That sounds so ridiculous to me because he's so happy and content. But he's not really growing. The current plan of action for the next month is to give him as much breast milk and solids as he'll take, and hopefully he'll gain a pound. If not, then the next step is to add a calorie booster of sorts to my milk. I'm praying that by that point he will have started growth hormone replacement therapy and will improve overall in weight and length. Even if we do have to add something to my milk, that's better than jumping right back to the NG tube. Not a possibility I'm a fan of...obviously.

The vision specialist - I forgot. I did get a bit of good news from him. And, actually, I like going to this doctor. He is gentle and kind and a gentleman. He shows a genuine interest in and concern for Judah beyond his vision problems. He's respectful to me and treats Judah with dignity. If I could, I would ask him to be my grandpa. (I miss having one.) Anyway, Judah continues to show some signs of improvement in the vertical movement of his eyes, and in his almost lazy eye. (It's not official that it is.) The patch is helping, so we'll keep up with that, 2 hours a day, for the next 6 weeks until we go back. The muscle weakness in that same eye is the same. The next course of treatment sometime in the not too distant future is an injection of Botox in the muscle to relax it, allowing his eye to freely and easily move to the center. Not sure how long that lasts, or how many injections there might be over time, but this treatment could help in preventing eye muscle surgery in the future.

Ok, so it that's not enough to process, I've been dealing with feelings of guilt lately, too. About almost everything. Not being a good friend to those around me. Not being adequate for Judah, i.e. not giving him the time in therapy that he needs, not being able to breastfeed him (that's a huge one that I refuse to talk about and deal with - still too painful). Not being the wife that Jared needs. The biggest guilt trip I've been on is because of my total failure in taking care of my family the way that I think I should be. Of course Jared has completely let me off the hook; he's been beyond gracious, understanding, and compassionate. My feelings remain, though. I feel like a disaster, a failure, an overwhelmed, not at all put together, disorganized, frazzled, tired, scatter-brained mess! We've had a hard couple of weeks. It's not always like this, and I know next week will be better. We're in a down phase or something. I just wish that knowing that made me feel better. I want to be handling all of this so much better. I want to be so way ahead of where I am. I want to be Super Mom! Although I'm beginning to wonder if she really exists.

On top of all of those feelings, I'm struggling to deal with the realities of Judah's pituitary disease, Panhypopituitarism. It's so...hidden and mysterious and complex and horrible. I don't understand it, and I can't keep up with it. I hate it. I hate that it effects every single aspect of my darling boy's little body. And I can't do a single thing about it. I'm helpless.

So, God hasn't really changed anything for me since the other day when I was feeling so weary of all of this. Who am I kidding? I still feel that way. No miracle healing or drug or good news. However, even though nothing has changed for us, I know that the same is true of Him; and that's comforting. He's the same. He's still all those things that I choose to believe are true. Everything His Word says about Him. He seems silent and far off right now. But I know He hasn't moved. He's still there, pursuing me and loving me...and Judah. He's with us at every appointment. There is peace in knowing these things. Hmmm, I really do miss my grandpa right now. I haven't missed him like this in years. He would've had a lot to say about God's goodness and faithfulness in regard to Judah. And he would have prayed like nobody else. I can only imagine how many times Judah's name (and mine) would have showed up in his prayer journals. Well now I miss Grandma. She's been gone for 20+ years, but I can picture her in my mind so clearly. She would have loooved Judah. All my kids, but there would have been a tenderness reserved for him I think.

Ezra's waiting to play the animal game. He's been more patient than any reasonable 4 1/2 yr old. And the pump awaits. Boo.