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.

Edith's bad week

While we were picnicking on Father's Day, Daddy noticed what he thought was a seizure from Edith.  She was sitting on a blanket when she let out a scream of pain and then nodded her head several times over 3 minutes.  I wasn't too convinced it was real, but as Ben was diagnosed with Infantile Spasms as a 6 month old baby we thought we should go in and have her checked out.  We visited the pediatrician on Monday and were referred to the University for an EEG and a neurology appointment.  The test confirmed our fear and she was diagnosed with infantile spasms.  She was admitted overnight and started on 40 mg/day of prednisolone.  Wednesday she was sedated and had an MRI and we were finally sent home.  We were told if all of the tests come back negative that would be a good sign and if she follows in her dad's footsteps she should respond to treatment.

The hospital stay wasn't all bad--Edith got her first tooth while she was there!

Edith hated having the electrodes glued to her head but she was a good girl and fell asleep as soon as the lights went out and she could nurse.  They monitored her for one hour, some sleeping and some awake time.  There was a lot of glue stuck in her hair afterword.

Alena and Nora thought it was no fair that Edith got to visit Mommy's work between appointments.  She even got to meet some of my coworkers and was on her best behavior.

Edith was trying to tear out her iv so the nurse gave her a little velcro splint to cover it up.  She used it like a peg leg to work on her crawling.

Edith had to be sedated for the MRI.  She also disliked that quite a bit.  She hates to be restrained and will fight as hard as she can.  We couldn't be with her during the MRI but were there waiting with her for the hour it took her to wake up.  The nurse put a towel around her head to keep her warm.

Father's Day

 Daddy was lucky enough to play in a golf tournament with Grandpa Steve the previous three days, so they were a little golfed out and did not do their traditional Father's Day golf outing.  We wanted to take Daddy to the beach, so we packed up our swimsuits and a picnic lunch and met Grandpa Ed, Grandma Dee, Aunt Kristina, and Francis at Kent Park.  It was hot but felt good in the shade and felt good in the water I was told.  I didn't get in because Edith was in a very bad mood.  I tried to feed her under our beach umbrella but she could not be satisfied.  I took her to the air conditioned conservation center while the big girls spent a little more time swimming and building a sand castle.

After the beach, we went straight to Grandpa Jensen's to grill out.  It was a big day!

The girls were busy in the office constructing their Father's Day gifts on Saturday.  Alena made a picture of her golfing with Daddy and Nora made a fishing picture.  We also got him a storm trooper beach towel and the new Star Wars movie (which he had hinted about heavily.) 

 Edith slept through the gift opening but was in a good mood after waking up from her morning nap.

Visit from the Penninans

The Pennimans were in town for a week and we had plenty of time to play with them.  The kids are always sad when it is time to part ways and count down until the next visit!  We went to a splash pad one night and another day we went to The Children's Museum.  There is a lot to see there.  Edith finally had enough and would not stop screaming.  An employee suggested that she might be hungry.  Lots of people think they know how to stop Edith's crying.  Aunt Angela finally managed it by strolling around the food court with her.

Grumpy in a Bjorn, grumpy in a tree, grumpy on a piggy back eating Uncle T's hair.

Grandpa Ed took the oldest three out on the pond in his row boat.  The big girls spent the night with their cousins and had a great time!  Nora was so tired she fell asleep on the way back home at 5.

Rolling

While Daddy was out of town, Edith figured out how to roll from back to front.  She is really good at sitting and now has a way to move.  She loves working on moving but gets very frustrated at it.  She also sometimes rolls into trouble by bonking her head on the leg of the couch or getting wedge between a chair and an end table.  It does seem to improve her attitude to have some freedom.

Edith has now been sleeping in her carseat at night.  She normally takes a 2-3 hour nap in her carseat sometime in the afternoon (if we are lucky!)  She loves holding her blanket and has trouble falling asleep without it.  She was screaming the other night and I put the blanket over her.  She immediately stopped crying and just laid quietly on the floor for 10 minutes.  I needed a scream break!  The goal is to have her in bed by 9 pm but we frequently don't manage it.  She wakes up at 4 for a snack.  Sometimes she refuses to go back to sleep for an hour.  Then Daddy hangs out with her in the family room so I can get a little sleep.

When Edith is feeling grumpy, she usually will improve her attitude if we take her outside.  She loves putting her feet in the grass.  When she has trouble napping, I sometimes put her in her carseat and sit outside with her.  She will sit there quietly until her eyes get heavy and she goes to sleep.  It is pretty peaceful.

Daddy is on another trip!

Daddy had a trip to Pennsylvania for a trade show.  It was a two day trip but he extended it to visit our friends Dan and Jen who live in Maryland.  We haven't seen them since we lived in North Carolina so he said it was a lot of fun hanging out with them.

The girls and I didn't want to just sit around and wait for him to return.  Thursday we had tickets to the Kernels game.  Grandma Dee and Grandpa Ed were up for the day watching the girls while I was at work, and then they joined us at the Kernels game.  Edith started out happy for an inning but then was not happy!  I walked around the concourse with her in the Baby Bjorn for several innings and left the big girls with Grandma and Grandpa.  I could see them from where I was standing.  Nora was up and talking with Grandma the entire time.  The two of them even got on the big screen!  Edith and I left after awhile so we missed the fireworks.  The report is they were really good.  Nora said "pretty" at every firework.  She was so tired when she got home she started crying.  I layed with her to calm her down and she cried, "tomorrow is garbage day!"  I don't know if that is what had her so worried.

Peppy's at last

Several nights ago we were eating dinner when I heard the loud music of the ice cream truck.  The girls have never had ice cream from the truck because they never went down Forest Drive as it was too busy.  They didn't realize that it was the music of the ice cream truck for this reason until it was too late.  After it was back down the street, they stayed in the driveway for an hour waiting for its return.  Unfortunately, it did not come back.  They put a pile of coins by the front door just in case they heard the song again.  As luck would have it, the truck did come back!  They assumed the ice cream was in a cone, but still enjoyed it on a stick.  They were already in their pajamas for the night.

Palisades

Sunday the weather was sunny and mild so we drove out to Palisades.  Every time we visit the girls have a great time!  The girls found rocks, shells, and sticks and put them in a treasure pile.  We played in the sand on the river bank and made lakes, moats, and castles.  Nora put a stick for a flag on each castle.  Edith had a great time in the Baby Bjorn with Daddy.  I took her back to the van after ahile to get out of the sun and she wanted to drive!

We decided to head to Sutliff Bridge after Palisades.  We sat on a picnic table and ate fried food while looking at the river and people watching.  A teen riding a dirt bike was popping wheelies down the street.  The girls thought that was pretty cool.  Alena was scared to walk across the bridge so she rode on Daddy's back.

Edith was having such a great time on our trip that she didn't want to sleep at all.  We got home around two so Daddy could help move the Cahalan's into Grandma and Grandpa's house.  Edith fell asleep as soon as she started nursing and slept for hours!

Watching shows

I can't believe I am allowing it, but when I am busy I put the big girls in charge of Edith.  They couldn't resist turning a show on on the tablet and it looks like Edith was happy they did.  She wants to be with her sisters whenever she can.  Both of them like to help Edith stand up.  Nora and I were reading a book about snakes and there was a page that said a large snake could eat a child.  I asked her what she would do if a snake tried to eat Edith (OK, that seems like a strange question.) She said she would pick her up and run into the house.  It is good to have big sisters to look after you! 

 Nora was playing tug of war with Edith yesterday.  Edith was in her carseat in the family room holding her blanket.  Nora pulled on the other side of the blanket and Edith laughed.  They played that way for 10 minutes.  Everyone in the family is happy that the little one is interacting with us more and screaming less!  She even laid on the floor by herself for over 5 minutes without fussing.  That is very exciting news for us!

  This is the first day of summer vacation.  Daddy took the day off and took the big girls to Elmcrest to swim.  It is Lucie's birthday so the whole bunch was going.  Grandpa Steve is going to get his money's worth out of Elmcrest while he still can!