Trick or Treat!

Happy Halloween! Here's the costume that I made for Eve. I can't take credit for the idea - I googled wheelchair costumes for ideas. But I did make it myself. I used Foam board and felt and fake flowers. Eve's Halloween festivities included a parade and trick or treating at school yesterday. Today we went downtown (the W) for trick or treating at the different merchants. It was a zoo. Many many kids in costumes. Of course Eve was the cutest.

By today, Eve was over wearing the headband. She started crying when we put it on her. Oh, well. I just rested it on her headrest. Here's our friend Iggy looking on with concern. Isn't he cute?

Well, now we get to sort out all peanut containing candy (oh, darn - I guess we'll have to eat it), and find acceptable treats for Eve.

Perro Burrito

This weekend we went to a Fall Festival in Monroe. It was a little chilly when we weren't in the sun, so we kept taking Eve's jacket on and off. She had a good time. We walked around and checked out the local shops in Monroe. A beautiful day and a nice outing.

It's actually been a little chilly here in Georgia. Unbelievable, I know. Jim calls Josie his old lady dog because she loves nothing more than to curl up next to you on the couch. She snuggles in tight and has to be touching you. She also lets you wrap her up in a blanket and will stay that way. What a riot.

Here's our Burrito Dog. Or Perro Burrito.

I don't think I've ever posted Eve's rain gear. I came up with this myself after she got soaked one day. It takes a few minutes to get her to the bus and then loaded using the lift, so I trimmed a poncho to fit her. She looks like an orange ghost, no?

I'm calling the Dr. tomorrow because Eve's reflux has gotten worse. She's had tons of wet burps (silent reflux) and has also been spitting up tiny amounts. That has GOT to be uncomfortable. I wonder if it's time to up the meds. I don't want to wait to see the GI for this, since that appt is a month away.

Hope you had a nice weekend!

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.

sequencing approved!

I got a voicemail from Dr. Shoffner's office yesterday. They received the pre-approval from insurance and will begin the mtDNA sequencing! Yay. So, I assume that we can now start the 12 week countdown.

In the meantime I am working on getting together all of the information, forms, and signatures for Eve's Katie Beckett Waiver renewal. Apparently you need to reapply every year. It's an exhausting process in more ways than one. You have to dig out all your EOB's to figure out medical costs (they want a monthly breakdown for things like Dr visits, meds, equipment, therapy, etc). You have to get notes/letters from her specialists. You have to get the pediatrician to sign your paperwork. You have to print out bank statements. And it's emotionally hard, too. I am faced with the reality of her disease. Yesterday I was filling out one of the (many) forms and got stuck on prognosis. What do I put? death? So I left it blank. I'll ask Dr. Setia today (we're going for Eve's flu shot). I'm nervous with the current economy that we might get denied this waiver. It's been a lifesaver in the past year. I'll just try my best.

Happy October

I know it's been a while since I've posted, so here are some pictures of the last week or so. Josie is fitting right into our family. She is extremely tolerant of Eve and will certainly mature into a best friend. Eve also enjoys Jo, except when she gets her faced licked.


Jim is also happy to have gained a snuggle buddy. This is what I found the other night. So much for keeping Josie off the furniture. Have you met my husband, "Softie"?

I suppose it's hard to resist.

He also likes to snuggle with Eve. She likes it, too.


We bought Josie a backpack with the goal of putting weights in it to make her walks more tiring. She looks cute, no? We're also going to start phase 2 of dog training this month. Josie needs a little more help. Or maybe it's us that need the training. We're going to have one fine dog pretty soon.

Eve is currently crying in the other room. Jim is probably ready to cry. They had a tough weekend together. Jim gets (understandably) frustrated with Eve because she has little patience and is pretty clingy. It's made worse because to communicate displeasure she just cries and cries. Then she gets so worked up that she's lost it and you can't quickly calm her down. She pitches fits over everything. In some ways I can't blame her, because she can't tell us what she wants. But in other ways, she needs to understand that immediate gratification is not always possible. I don't want a selfish brat for a child. It's such a struggle for all of us.

Anyhow, yesterday Jim and Eve spent the afternoon together because I was out. Oh, boy. He needed space when I got home. Poor man. She was pretty hard on him. Today seems to be a better day. Well, it was a better day. She just woke up from her nap and is still groggy. I'm taking her out with me this afternoon to visit with Tracey and Iggy. Eve will be happy to see her friend Tracey again (as will I).

Not much else is going on. Eve got her haircut yesterday and was really really good. She didn't squinch up her shoulders or squint her eyes. She stayed still and smiled at the stylist. I was very proud. We have a Flu shot scheduled for Tuesday. Next trip to the neurologist and geneticist is in a week and a half. Oh, realized she can't say house any more. She pretty much just says owl and more and Da.