Visits to Drs. K

I just wanted to update everyone on some stuff. Tuesday was Eve's visit with Dr. Krewiecki and Dr. Kendall. We told Dr. Krewieki about our two concerns (that she's down to about 5-6 words and that she's scared to lay on her back). He checked her out and he seemed to feel positive and thinks Eve could regain some of her lost skills. I don't believe that for one minute. She has NEVER regained a lost skill. I prefer to be realistic. Otherwise he really didn't have anything to say.

Next was on to Dr. Kendall. She examined Eve and took a bunch of blood for testing. She wanted to know if we had any questions. We told her about our concerns and she nodded. I think it's just a part of the disease. She asked if we thought the meds were helping and we told her we've seen no improvement in Eve since beginning them. However, we can't be sure they aren't preventing her from backsliding more. Dr. K said that usually with kids that are as severely affected as Eve, those meds don't have dramatic effects. But we agreed to keep her on them for the time being. We were able to ask about buying B2 capsules instead of getting it in liquid form from the compounding pharmacy (7cents a dose compared to a dollar a dose). She said no problem. So that will save us lots of money.

We also talked about feeding tubes (g tubes). Meals are increasingly difficult with Eve. She has trouble drinking from a cup, cannot drink from a straw at all, and sometimes has trouble with her sippy cup. She is very fussy and is particular about what she eats in what order. That's not new, but the intensity is. We've had a few meals when she's only eaten bread and fruit. Or she only wants our food (even though it's exactly what's on her plate). That's pretty typical for any child, but it's compounded by the fact that she can't tell us what she wants and there are lots and lots of tears until we guess. Oh, and it takes her forever to eat. 45 minutes for dinner tonight. *So* Dr. K brought up the g tube before we even mentioned all this to her. She's putting it on our radar because she thinks Eve will definitely need one at some point. She said she supports getting a g tube because she tells parents that it is painful to be hungry/thirsty all the time. A g tube would have to go in if Eve was aspirating or failing to gain weight. However, she said there isn't a single GI who wouldn't put a g tube in her in her current condition. She gave us some names of pediatric GI's in case we wanted Eve evaluated. We do. Here's some of my thoughts:
If we get the g tube, it can be used for supplemental feeding. She can still eat orally, but we won't have to make dinner a battle. She can just eat fruit if she wants. I'd rather plan for a surgery than have it be an emergency situation, plus then our family can help us care for her post-surgery. Also, better for her to be healthy when having surgery than sick (in an urgent situation). I don't know, it just seems to be worth serious consideration. The good news is that one of the ped GI's that she recommended has an office in Athens! Yay. I'll call on Monday.

Other than that, we're doing okay. Eve is happy and bossy. She had a rough night on Thursday and we can't figure out why. Perhaps leg cramps or a headache. It was a rough night for all of us consequently. Nothing like holding a screaming child (and you don't know what's wrong with her) in the middle of the night to make you sad about your situation.
I'll try to post pictures soon.