Clean bill of health!

Edith had her last scheduled neurology appointment on Monday and her EEG looked normal!  The doctor said that she shouldn't have to have any more EEGs as long as everything continues to go well.  What a relief for everyone!

What else has this little one been up to?

Steroid: When Edith got down to 6 mg of steroid from a fast wean from 60 mg she became very unhappy.  She was screaming all day for 2 days and refused to eat.  We were worried we would have to take her to the hospital to get IV fluids but we adjusted her steroid dose back up to 9 mg and she gradually improved.  It was a stressful couple of days with several doctor appointments and unhelpful calls to the University (her doctor just happened to be on vacation last week).  We now plan on taking her steroid wean very slowly at a little over 1 mg every 3 days.  She still should be done in two weeks as long as everything goes well.  As her doctor said, there is no expert on steroids.  Different people react differently.

Sleep: Nope!  She has been taking better naps, but many nights has trouble sleeping past midnight in her electric swing in her bedroom.  We take turns laying on the floor on a mattress in the basement pushing her in her carseat swing while the cats meow and sniff our faces.  Even Grandma Dee has pulled a couple of shifts.

Eating: Normal food consumption!  She has dropped from 5 oz every hour to 3-4 every 3 hours.  She is no longer screaming with hunger and is slowly losing weight.  It could be several months before her cheeks go back to normal we were told.  When she was eating so much we switched mostly to bottles.  My breastfeeding career is coming to an end.

Crawling: Yes!  She just learned to really crawl at the end of last week at 8.5 months.  She doesn't go very far yet, just a couple of feet at a time, but she has a lot of steroid induced weight to haul around.

Pulling up: Yes again!  She can pull up to standing on chairs, couches, and ottomans.  This is her favorite activity.

Playing: Yes! She is finally happy enough to sit on the floor and play with toys.  Her favorite toy is a witch lantern for some reason.  She also likes playing with a little ball and Sophie the giraffe.

Teeth: 3 new teeth last week!  All of them on the top, so now she is up to 5 total.  She likes to grind the top and bottom while eating baby food. 

Smiling: Yes, finally!  She is turning into a happy baby.  When I enter the room she gives me a whole body smile where she does a little head tilt while smiling.  It is very sweet.  She laughed in the car on the way to the doctor.  We hadn't heard that in months. 

Edith with her favorite toy, the witch lantern and her blanket.  Still with glue in her hair, the two infantile spasm survivors!

Daddy picture shoot

Daddy bought some new outfits for the girls and took their pictures as a surprise for me.  They turned out so cute!

Family vacation

Tuesday we made a day trip to Adventureland with the Cahalans and Grandma and Grandpa Jensen.  The girls all had a great time!  Alena was feeling very brave this year and decided her favorite ride was the Galleon.  She also enjoyed the Falling Star multiple times and even rode the Tornado 2 times with Daddy.  She was laughing with excitement the whole time she was on the Falling Star!  Now that she can sneak on as 48" she can ride almost anything. Nora thought the Galleon was a little too much but loved the Underground.  The Carousel was another of her favorites.  Everyone had fun on the Raging River except for Aunt Melissa and Sadie, who was brave enough but too short to ride.  Daddy got soaked on each turn!  All of the adults other than Grandma rode the new roller coaster the Monster.  It was very scary and they take a picture of you going down the first hill so everyone could laugh at your terrified face at the end of the ride.  My old friend Ben Ulin was the magical act as always, and all of the big kids got to watch it from the front row.  At 7 we had experienced enough fun for one day, so we headed home to rescue Grandma Dee from a day with Edith (she was a good girl for Grandma.)

 A couple of kids wanted to ride Infant Ocean.  Alena declared it was lame.  Well, it is called Infant Ocean!

You would think the kids would be exhausted from a whole day at Adventureland, but that was not the case.  Wednesday morning we took Edith to Connie's and headed to Monticello for a canoe trip down the Maquoketa River.  We got a canoe and tied a kid kayak to the back.  It was a really fun float and very pretty.  The girls took turns on the kayak, though neither one really wanted to paddle.  Part of the time they both rode on it together and named dragonflies.  They were all named "Canoe."  Their favorite part of the trip was floating in the river with their life jackets and playing in the sand.  A lot of the river is sand bottom and most isn't more than 2 feet deep.  We found a lot of clams and caught a crayfish.  We were on the water for 5 hours and packed a picnic lunch.  And the girls still were not tired!

The Beanie Boo collection is increasing thanks to Grandma Dee bringing two new ones on Monday, a blue leopard for Alena and a pink koala for Nora.  Every second we haven't been on a trip the girls have been playing with them.

Still getting bigger!

Edith is eating less now that her steroid dose is decreasing.  Now when she is hungry she doesn't scream as terribly and a lot of time eats less than 4 oz.  Her steroid dose decreases by 6 mg every three days.  She is also smiling more and really working on her crawling.  We think she is just having trouble moving all of her extra weight around.  She was 20 lbs, 15 oz at her check up yesterday and is 8 months old.  She is officially bigger than Jones!  Her blood pressure was elevated two weeks ago but now is pretty steady around 116/60 which is "acceptably high."

Edith loves when Alena kisses her cheeks.  She squeals and usually pulls some of Alena's hair out.  Alena is a good big sister and lets her get away with it.

Teaching little cousin Miles how to sit

Nora is trying to teach Edith how to hold her own bottle...

...and was so proud of her for holding the remote control.  Edith is strangely not very interested in the remote, the first baby I have ever seen that isn't.  The only toys she really likes are Sophie the giraffe, furry stuffed animals, and of course her blanket.  She also loves grabbing and squeezing my skin, rather painfully for me!