EEG and EKG

The weekend after Eve's birthday I had to go to a conference in Providence. It was very nice to have some grown-up time. I got to see dear friends and even do some retail therapy. While I was gone, Grammie and Papa came for a visit. Eve had fun finger painting with Grammie.




Josie had fun paw painting with Papa.



Last Friday, we went to Atlanta for an EEG. I totally forgot my camera, and I am so bummed. I need to figure out how to get pictures from my phone onto the computer, because Eve was a sight to behold. She was totally upset, but she was never in pain. They stuck tons of electrodes on her head and in her hair. Then we tried to get her to sleep. No luck, but she did get drowsy. After that, they put a strobe light in front of her (I assume to induce a seizure). One one of the cycles of strobes, Eve opened her eyes wide (and didn't blink) and stared off to the side. I am wondering if that was a mini seizure. I didn't see any crazy waves on the monitor, but I'm not that kind of doctor. :) They said we should get results in 3-4 days.



Yesterday Eve and I went for her cardiac evaluation. She was an ANGEL. She never cried (like she did for her last EKG) and was so good and patient. I think it helped that we had a 20 minute ride to the office rather than a 90 minute one. Her little heart is perfect. They even printed an ultrasound pic for me!



All else is well. Josie is growing up. She is settling down and is really really good around Eve. I can lay Eve on the floor next to Josie and Jo will either lay down next to her or try to sit on Eve's lap! Eve loves to pet her. They are going to be very good friends. Yesterday when Tracey came over, Josie calmed down in record time and just lay next to us on the floor and happily chewed her toy.



The only thing I am currently concerned about is that Eve has been taking a really long time to eat. Her meals (which are small), take her 30-45 minutes to eat. If she has trouble getting enough nourishment through table foods, a feeding tube for supplementary nourishment might be in her future. We'll see what the Docs say at her next appts (August - pediatrician, Oct - Neuro and genetics). Oh, and yesterday she was measured at 34 inches and 27.1lbs.

Happy Birthday to Eve!

Today is Eve's birthday! She turns 3. I can't believe it. She had a great day. Here are some pictures:

These are the cupcakes I made for school. I was pretty proud of myself.

I ran out of butterfly wings, so Jim made centipedes.




It looks like the stander tray is tilted from this angle, but I swear it's not.

Oh! And here are her new braces. We got them yesterday. They're really cool and fit her well. We had to get new shoes to fit them, too.

Thanks for all the birthday well wishes! Eve had a great day!

Bad dog

Josie has been doing so well lately that we've been letting her sleep on her bed in the crate. She loves it and sleeps through the night. I think we started trusting a little too soon. Monday I left the bed in the crate with her when I went to work. I totally forgot to take it out. Big mistake. This is what I came home to:


Bad Josie.

visit from Oma and Pop and doggie daycare

For the 4th of July, Oma and Pop (my parents) came for a visit. We had lots of fun. Josie took to my dad immediately. She also loved playing tug with my mom. It was a wonderful visit all around. We ate a lot and spent time together. Mom and I went blueberry picking and I made a pretty good (but messy) pie. Jim and I were able to go out to eat and go to Borders one night, so that was a treat. We never get to go out, so we were very grateful. Here are some pictures from the visit:

The downtown area where we live had a (very) little Independence day celebration. Bluegrass music, popcorn, watermellon, and even a few goats.




Last week we signed Josie up for doggie daycare. Never in my life did I think I would ever send a dog to daycare. Never. It's an animal. Here's what changed my mind. I can only leave her in the crate for about 4 1/2 hours at a time. With my summer teaching schedule I have to leave the house and race to work, teach my classes and race home (because there's a 90 minutes gap between classes). This means I get no other work done (manuscripts, etc). Also, with gas prices, I am not into making several trips back and forth (it's about 20-25 minutes one way). Also, Josie had soooooo much fun at puppy preschool. She loved playing with the other dogs. So we decided to sign her up and take her once a week for a few weeks. It would give me a massive break (and a full day at work) and it would give Josie a wonderful play day. So, the first day they have to give each pup a temperament test to see if they can come to daycare. I guess they just watch your dog interact with the other dogs. When I dropped Josie off and her tail nearly wagged off her body, the staff looked at her and said, "Ummm...I think she'll go in the medium group." Not for size, mind you, but because of her energy level. I guess the dogs her size wouldn't be able to take her exuberance. Ha. Anyhow, I picked her up in the afternoon and she had a report card. She did a great job and passed with flying colors. You can click on the picture of her review to see an enlarged image.


Josie also had a great time! She slept the rest of the night! Totally wiped out!!!!! I can't wait to take her next week. ;)

cardiac eval

Good news! We got the cardiac evaluation scheduled. And, they have an office in Athens!!!! Yay! I hate driving to Atlanta, so this is great news. Especially with gas prices lately. So that will be at the end of July.

Genetics/mito clinic appt

Well, we went to see Dr. Kendall today. Very very interesting. She spent about an hour with us. She started by explaining the functioning of mitochondria and gave us more detail about her lab results. She asked us about Eve's functioning, and how we envisioned Eve's life/prognosis. I bet she was relieved she didn't have to do the whole "progressive and fatal" explanation. She wants Eve to have a EKG/echo (sp?) workup done to get a baseline (not because she suspects a problem). The heart is one of the systems that can often be affected with mito. She also mentioned that lots of mito kids are on feeding tubes. That might be a future issue, but we'll cross that bridge if/when we have to. We also talked about the DNA sequencing. I have to ask Dr. S's office to send the muscle DNA to Dr. K's office. This should tell us if it's a mito or nuclear DNA mutation. There is a 75-90% chance this is a nuclear mutation. If it comes back as mito mutation, they will test me to see if this is sporadic or if I am also affected (although asymptomatic). She said that once her lab gets the sample it should only take about 6 weeks, rather than months to do the sequencing. I guess there are 16,000+ possible mutations... or was that mutation sites. I forget. She wants to see us every 3-4 months to start. The frequency of visits is depending on the patient's severity.

We also asked questions about meds. She wants Eve to get riboflavin (B2) because it has shown to help some patients with Type I defect (which she has). She is against the mega doses of CoQ10 because it doesn't cause miracles and has actually shown to be correlated with muscle disease in some patients. So, we are sticking with the 300mg, but could go to 500mg if we want. She does think it is helpful, so we shouldn't drop it all together. She said it's just that CoQ10 is not like chemo for cancer. It won't fix this. Oh, and she wants Eve to start a low dose of carnatine. Boo. :( Carnatine makes some kids smell like fish. They excrete the odor through their pee, sweat, etc. yuck. Cross your fingers.

They took about 6 little vials of blood (of course Eve was not thrilled) to check different levels (lactate, etc). Oh, and Dr. K gave us a ER protocol letter. THis way, if we need to go to the ER, they have the info on her disorder and what precautions should be taken, etc. I feel very positive about this appointment. Oh! and she gave us her email!!!! Yay! I can't tell you how many times I have really quick question and I'd love to email the neuro. But I can't have his email and I have to leave a message with an answering service EVERY time I call, no matter what the reason. So this is great. We go back in the middle of October.

Here are some pictures of the portable chair we got for Eve. We've used it twice at a restaurant and it's great. It comes up high enough in the back that she feels very secure. It doesn't wobble like many of those wooden highchairs, and we know it's clean. The only drawback is that it's hard to maneuver a cup for her to drink with. :)




Here's the latest pics of our 16.5 lb bruiser!!