Eve is doing better

I just wanted to quickly post that Eve is feeling better. Her nose isn't running so much, and I think we'll avoid a return visit to the pediatrician...this week. :)
Hopefully the weekend will be great and she'll be happy and healthy.

Still sick

We ended up taking Eve to the pediatrician again on Saturday. Although her cough is gone, she still is congested and has a runny nose. She was totally cranky on Friday and Saturday and nothing would please her. We wanted to check for possible ear infections, etc. However, the regular pediatrician was not in the office, so we saw his partner. She didn't find any signs of infection and told us to monitor Eve and give her saline nose drops. I suspect we will be returning by the end of the week. Eve just can't shake colds the way a healthy person can. Fortunately, she's been in a better mood. Hopefully the regular doc will be in if we need to go back.

Eve's getting so big I just can't believe it. Oh, and let me track another symptom. This weekend we noticed that Eve was freaking out on her changing table. She looked scared and put her arms out in a startle reflex a couple of times. Once, we had to change her on the floor because she was crying so bad on the changing table. It reminds me of when she stopped being comfortable in the shopping cart and also of when she stopped being comfortable sitting up in the bathtub. She's afraid she will fall. I'm wondering if her sense of balance is off from congestion. Maybe it's also disease progression. She is sick after all. Perhaps this is a neurological regression. I'll have to mention it to the Docs. Eve's teacher noticed today that she cried during diaper changes. I'll fill her in on my suspicions.

Otherwise all else is well. We finally have some good sleeping weather this week and the temps are supposed to make it out of the 80's. Yay!

Mito Awareness Week

September 21-27 is Mitochondrial Disease Awareness week! You can learn more about mito by going to umdf.org or mitoaction.org.

Eve is sick again

Well, I took Eve back to the pediatrician yesterday. She has a nasty nasty cough and is wheezing. He gave us an antibiotic and 2 inhalers (a steriod called Qvar and albuteral). She's only had one dose of the antibiotic (albeit a bigger dose on the first day than the next 9) and 2 doses of her inhalers and she already has begun to sound better. She slept better last night and woke up at 6 instead of 5am. We'll see how that goes.

Josie's Surgery

So, yesterday JoJo had her lady parts taken out. I picked her up from the vet, and this is what I got:


I guess I'd be sad, too. She was still wonky from all the medicine and couldn't even hold her head up. She just slept and slept. Eve thought she looked pretty silly with her cone on. While they had Josie under anesthesia, they also operated on her foot. She had had this weird growth on her toe. The Doc wasn't sure if it was a piece of foreign matter (e.g., splinter) that the flesh grew around or even a tumor. They sent the tissue sample off to UGA to be analyzed. We'll wait to hear from them.



She's doing so much better today. We were able to remove the bandage from her foot and she's walking around very well. We even had to stop her from trying to jump up on us when we got home today. Unfortunately, now that she is mobile we have a problem. Eve is absolutely terrified of Josie with the cone on. I guess it was funny yesterday when Jo wasn't moving. But today Josie was walking around and you can't see her face, just this cone. It must look very strange to Eve and she was screaming and crying every time Josie got near her or moved around. I actually had to banish Jo to the hallway behind the baby gate until Jim came home from work. Eve wouldn't calm down. We're going to have to get her used to this because I think Jo will have to wear it for another week or so.

snuggle time

Here are some family snuggle time pictures.

Josie was trying to bite Jim's ear here, which Eve found hysterical.

Here's Josie getting yelled at.

And here's just a fun nearly naked picture. Isn't amazing how Eve is growing? She's really lengthening and losing her baby fat. She has a kid body and not a baby body.

Eve has been doing well at school. Last week she was out one day (she had gotten sick on the bus), and one of her classmates was asking for her all day. Apparently he fights over pushing her around in her wheelchair. There's another kid who's on her bus who always wants to push her, too. Sounds like she's popular. Yesterday Eve was the light helper and helped turn on and off the lights everytime they came and went from the classroom. I think she's calendar helper next. I love that she's being given jobs to do. Since she's so bossy, I just bet she loves being in charge of something.

Last week I had the most surreal experience. I was in Toys R us with Eve when a woman approached me and asked me if Eve had mito. Well, you could have knocked me over with a feather. Turns out she had caught sight of Eve's biopsy scar. She then introduced me to her family. One of her children has mito. She's a beautiful 6 year old who has the same type of mito as Eve but is night to Eve's day. This sweetie is walking and talking, but is dependent on tubes for feeding. I believe she also has seizures. Anyhow, we exchanged information and I am still amazed by the situation. I think when your kid is suffering from something so rare, you feel very alone. Usually if anyone asks what is wrong with Eve I don't bother to mention mito specifically, because it results in blank stares. So, to actually meet someone who not only knows what I am going through, but is on the same path...well, that is staggering. I feel very fortunate that I decided to go to Toys R us that day. What are the odds?

Family walks

We've been taking Eve and Josie on walks lately. Eve loves to hold the lease while she's in her wheelchair. I think it's really good for everyone. Josie can actually pull Eve if we don't reign her in.

One of the things we've been doing on weekends is driving over to Athens and walking around town. We have a specific track that we take and then we stop for coffee or a smoothie. Here we are on the outdoor patio of Starbucks. Josie has her "gentle leader" on so we have better control of her head and she can't pull on the leash. She get's so excited seeing all the people and occasional dogs. Eve is also having a ball being bossy and in charge of Josie.

She was laughing here because her feet were touching Josie.


Here's Josie and Eve riding in the car. Of course Eve is totally laughing at Josie.