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!

Palisades resort

We went back to the sandbar at Palisades.  Edith was not in a great mood but eventually fell asleep in her carseat under our beach umbrella while Alena dug a hole in the mud.  I was exclaiming how great our beach umbrella was and minutes later it blew inside out.

Little smiler

Edith has been having more and more time where she doesn't seem like she is in a fog.  Last week she finally started smiling again at us on a more regular basis.  Daddy has been taking her for a jog after the big girls go to bed.  Every time he stopped the other night he said that she would smile at him.  Her smile doesn't look quite the same as it used to because her cheeks have squeezed her lips together so tightly, but it is still cute and we had missed seeing her happy!  Sleeping has been getting harder for her at night, but she has been playing on the floor during the day much more contentedly.  Her favorite activity is still trying to stand up on someone's lap or staring at her hand.  She is also getting more adventuresome at moving.  Alena said she saw Edith crawl two knees forward and she is also lunging at her blanket.  

Cousins week

Uncle Tyler and Uncle Sam were on Ragbrai for the week, so all of the cousins stayed at Grandma Dee's while they were on the ride.  It was another great time with the cousins!  The first Saturday night they were visiting, my cousin Anthony got married.  It took a long time for the dance to start, but when it did, the four big kids had a great time dancing to "Shut up and Dance with Me," "Shake it Off," and "I've Got this Feeling!" The four younger cousins weren't having as much fun, so Aunt Angela took Alice, Nina, and Otto home while Edith enjoyed a fun trip to Wal-Mart to buy more formula.

Wednesday everyone came up to Cedar Rapids to play.  We went to the Playstation where the kids enjoyed going down the black slide and Edith helped Daddy beat Aunt Angela at Skee Ball.

The following Saturday morning Ragbrai was going past Grandma and Grandpa's house so the big kids made paper megaphones and ran around the yard cheering them on.  Daddy spend the night before with them in the camper in the yard.  The kids made outdoor potties.  The girls' potty had a decorative sign and was circled in flowers and rocks.  The boys' potty was a bare dirt hole.  The cousins spent Saturday night inside and Aunt Angela dropped them back off at home the next morning.  Both girls are looking pretty tired, and all of the cousins are moaning about how long it will be before they get together again.  Aunt Angela set the goal of Nora being able to identify her by name next time, as Nora wasn't quite sure the difference between Angela and Julianne.

It's a heat wave

The weather forecast is for heat indexes of 110 this afternoon and tomorrow.  We went out to enjoy the great outdoors in the morning before things got too sticky.  Alena rode the scooter and Nora the balance bike down to Bever Park, around the playground, and back up the hill.  Alena is getting pretty fast on the scooter and beat the rest of us home.  Then I put the water table under our great shade tree for the big girls while Edith enjoyed swinging in her swing.  Then it was lunch time and we settled in for the afternoon in our artificial cold air before off again for a dentist appointment.  I haven't had a day off work without an appointment in a month, I think.  Ben is out golfing with coworkers this afternoon.  I bet there will be some sweating involved with that.

The garden is doing well.  The asparagus behind Nora is in its second year and looks great.  Nora is enjoying some alpine strawberries.  This year I added a third raised bed for annuals.  It is packed full with okra, zucchini, cucumber, kale, green beans, and sunflowers.  Everything is just starting to produce and I already can't keep up with the green beans.  I also planted some different fruits this year: blackberries, red raspberries, red currant, and aronia berry, as well as an apple, an apricot, and a pie cherry tree.  The deer also love all of my new plantings.  If they are not fenced in they will not make it through the night. Ben is always building new fences around my gardens. The bugs are trying to destroy my plants.  At least we live close to Hy-Vee if the harvest is a complete bust.  

 

Bible school

Alena and Nora joined Tillie and Lucie at bible school again this summer.  The theme was "Cave Quest," and they had a great time learning the songs, making crafts, playing water games outside, and eating snacks.  VBS is always the highlight of Alena's summer, and now Nora thinks so too.  They are already counting down to the next year.  This year was extra fun because they got to spend Tuesday night at Grandma's house, and Alena and Nora got to share the top bunk.  Yes, they were very moody from lack of sleep the next afternoon when they got home.

Nora thought it would be nice if the cousins all held hands for the picture.  Grandma and Aunt Melissa styled hair for the occasion.  Alena insisted on wearing her Christmas dress from two years ago, or as she calls it, "the dress you never let me wear!"  (In my defense, she gets very sweaty in it.)

Everyone else was meeting in a circle.  I don't know what these two were up to but it looked like fun!

The kids sang a lot of songs and learned a lot of actions to go with them.  We were proud how both of our girls did so well learning them so quickly.  There might have been a few too many songs, though.  Around the end while Bev was talking, Nora came over and whispered, "how many more songs," and "when do I get a cookie?"

Another doctor appointment!

Edith has had a rough month with lots of doctor appointments and blood draws. We received good news on Tuesday that we could begin weaning her off of the prednisolone. She will be done taking it August 24th. We were told that the symptoms from the steroid including extreme hunger and sleeping difficulties will improve as the dose goes down, but she might be extra grumpy right after she is done. We have dealt with extra grumpy before! She is up to 18 lbs, 3 oz, gaining over 3 pounds in one month. According to the EEG, focal epileptiform abnormalities were present in the left temporal region, but she no longer has hypsarrhythmia. We will need to keep an eye out for future seizure activity but we are hoping for the best.

Edith continues to be great at sitting. She likes to play with her furry troll and puts her hands on a family member's sitting lap to pull up to somewhat standing. She has given up on rolling and crawling attempts for now. We think she will start back in on that once she is feeling more normal. She is also working on a hair collection. She pulled out some of Nora's and then some of Alena's the same day. I told them she wanted some brown hair to go with the blond she just found for the collection. The girls continue to be good big sisters. They both will feed Edith a bottle when we need some help and are good at bringing her toys. They also like to feed her baby food, although that means a lot of food is going to end up all over Edith's face! Edith will eat all baby food so far, but she prefers fruit to vegetables. She eats 4 oz of food for lunch and 4 oz for supper, as well as multiple bottles and nursing sessions. I wonder how much she manages to eat in a day. She eats as frequently as a newborn, about every one to two hours. She can make it 4 hours at night, at least!

Getting a little happier

Edith has been sharing a few smiles with us the past two days!  She seems like she is less in a fog and is paying more attention to her surroundings.  Pokemon Go! has taken over the city.  People are walking around watching their cell phones waiting for a virtual Pokemon to appear on their screens.  Edith has a real Pikachu!

 Edith dumped out her toy bin.  Showing a little initiative

Edith really wants to stand up on the lap of a nearby family member.  Nora is pretty good about allowing her to do it.  Edith just now seems like she is getting interested in moving again like she was before the medicine.  She just has lot more weight to move around now.

Alena and Nora's staycation

Alena and Nora have been pretty patient about all of the extra doctor appointments.  We have not been able to do some fun things that we had hoped this summer, but we have still managed to have some fun!  The big news in the neighborhood is Morgan got a new puppy, a Golden Retriever named Gideon. It took a little building up of courage, but now whenever the girls see the puppy in the front yard they go over and play with him.  He is so cute and he loves playing with the kids.  Most nights Nora will go to Rowan's house or he will come over to ours and announce "It's scooter time!  Nora started on her three wheeled scooter but now is riding her balance bike while Alena and Rowan ride scooters.  They ride up and down the street until it is time to go in, or until they see the puppy and run over to pet him.  Last night Rowan had his bounce house out and the kids had a great time jumping while the adults relaxed.  They have also been catching lightning bugs if they can manage to stay up past bedtime.  Ben has been reading Harry Potter to Alena before bed.  She loves the book, and Nora lays in the other bed in Alena's room and listens until she falls asleep.

 The girls pretending to be under the sea, then in a puppy house that they built (under the kitchen table while I was trying to clean the kitchen.)

Edith scored this cool backpack off Craigs List.  We will see if we get much use out of it.  She didn't seem to hate it.

Scooting down the street.

Another source of entertainment has been Jones.  The other night the girls were fighting while I was trying to prepare supper.  So I asked Alena to brush Jones.  Both girls cooperated and brushed him for 30 minutes, then chased Ruby around for the same amount of time trying unsuccessfully to catch her.  The next day they played school and Jones was the principal.  They made him an office with a place for him to sit in the sun and they gave him a hat.  Nora wanted to teach Jones tricks like Lucy the neighbor dog.  She is trying to get him to balance a treat on his nose.  I think it might take a while before he masters that.

The weight gain continues!

Poor little Edie's cheeks have gotten so plump she doesn't look like the same baby to me.  She has been extremely mellow lately and even when she plays she sits with a straight face.  It has been a hard week waiting for the next EEG that will hopefully look good so she will be able to wean off of the steroids.  We don't feel like we have met the true Edith yet because she was in pain before starting treatment and now she is drugged up.  Her WBC was elevated to 18,000 for the CBC they did on Tuesday at the University.  A side effect of the steroid is susceptibility to infection, so they wanted to check into it.  Which led to a 2.5 hour follow up at the pediatrician Thursday after work.  Grandma and Grandpa Jensen stayed with the big girls while Edith was subjected to a blood draw and a catheter.  Her WBC was up to 32,000.  Yep, another CBC scheduled for Friday as well as blood and urine cultures.  After all of that and a call to pediatric hematology, it seems that the elevation was due to the high dose of steroid only.  Good news!

Edith peed in the potty for the first time!  Daddy poured warm water on her feet to get her to go.

Our little straight-faced chubby girl

Swinging

Edith's medicine made her even more fussy, super hungry, and also made it difficult for her to fall asleep and to stay asleep.  Daddy rigged up this swing adapter so she could sleep in her carseat while swinging.  It was relaxing to be able to sit in the shade and push the swing.  I even had time to read my first book in months!  He put another swing in the basement so she could get to sleep when the weather was bad.  It took about 5 nights before she got used to the steroid and could sleep without swinging.  The new routine is Ben swings her in the basement around 10 pm until she is sleeping well.  She wakes up around 2:30 to nurse then goes back to sleep until 6 when Ben gets up with her and gives her a bottle.

Little Round Head is even rounder than ever.  Her tireless eating caused her to put on weight pretty quickly.  She is so much happier now that her seizures are under control.  Her last one was on Thursday, less than two days after starting the medicine.  Now she will sit on the floor and play with toys without screaming!  It has been a really good change for everyone.  She is still pretty straight faced and you have to work for a smile.  As for getting a laugh out of her--you really luck out if you can manage that.