Another Evie Update

Despite all our efforts, Evie had to be admitted to the hospital today. Each day since we adjusted her medications has been more difficult for her. She has getting more puffy each day as well, and today her feet looked like dinner rolls. Here is a picture from Sunday at the Morton Arboretum with Uncle David. I have also cropped it so you can see her face up close - and just imagine that today she was worse.

Today we stopped by the pediatrician's office to pick up paperwork for our visit to the nephrologist tomorrow. Well, the pediatrician just looked at Evie and wanted to admit her. Then she got on the phone with the cardiologist and after that it was pretty much decided.

Evie is at Hope Childrens Hospital (not Edward, unfortunately) because we were told that it can be "tricky" to rehydrate heart babies like her. Her cardiologist wants to have the cardiac team that is familiar with her to be right there in case they are needed. Also, we will try to have her angiogram done during this visit. We had one scheduled for August 23, but would rather get it done when she is already an inpatient.

Evie Update

Evie polishes up her computer skills:



As some of you may know, Evie has been on seven medications for over a year now. (When she first came home from her third surgery in March 2009, she was on thirteen meds, so I am not complaining about seven!) Three of those meds are diuretics which help rid her heart and lungs of excess fluids.

We are going to see a pediatric nephrologist (kidney specialist) this week. Both Evie's cardiologist and pediatrician want to make sure that all these medications are not adversely affecting her kidneys. Also, she has had bloodwork and urine analysis done several time in the last few months and a very small trace amount of blood has consistently shown up in her urine. There is no urinary tract infection, however, so that is another reason her doctors are concerned about her kidneys.

Evie has also developed a condition called polycythemia. This is an increase in red blood cells which, in her case, is caused by her low blood oxygen levels. Her blood flows more "sluggishly," and there is a chance of her having a stroke. To avoid this, I give her half a baby aspirin every day. In researching polycythemia, Francis and I read that one of the treatments (in adults) is phlebotomy - also known as blood-letting! It sounds so medieval!

Evie had blood work done this week, and her cardiologist decided to stop two of her diuretics. We have been instructed to make her drink as much as she possibly can. Unfortunaltely, Evie just doesn't want to do what she doesn't want to do! We have a week to get her on track before we have to repeat the bloodwork. In the meantime, she is working a little harder to breathe and her face is puffy. Please say an extra prayer for her this week!


Here is Evie at my computer:

Lazy Sunday

A couple of Sundays ago, it was raining hard in the morning and we just hung out at home. Evie thought it was hilarious to put her washcloth on her head:



Reading together:



Gavin practiced using a new umbrella from Nana:




A cold drink, snacks, and Ninendo DS - the twins are happy taking after Daddy:



Gavin and Daddy rest after playing too much Nintendo:

A Message From Evie To Uncle David

Dear Uncle David: Evie was thinking about you the other day. Here is her message to you:

New Booster Seats

We are transitioning the twins out of their high chairs and into booster seats. They have not needed to be in high chairs for awhile now, but they just love those chairs (and so do I)! We have lots of memories of Evie and Gavin holding hands in those high chairs and banging toys on the trays, as well as the old standby, "I'm not touching you / I'm not looking at you."

I just realized that you can't see the actual boosters in these photos, but you can tell that the kids are sitting higher up. At first they weren't interested in them, but after a few days Evie was totally happy in her seat. Gavin is still going back and forth but he'll adjust in a few days (nothing new there)!

Uncle Mark

This weekend, Uncle Mark came over to our house while Aunt Robin, Annie, and Sam went to a birthday party nearby. (Mark opted to hang around 2 shrieking kids instead of twenty, LOL.) Gavin had refused to nap that day, so he got to help Francis and Mark set up Francis' new Xbox 360 "Slim" (it's sitting on the coffee table). In the photo below, Mark and Gavin are looking at one of Francis' birthday presents, the complete Transformers cartoon series from the 80s on DVD. (It's the "Matrix of Leadership" edition! - Francis)



When Evie woke up, she gave Mark high-5's for reading to her:

The rest of the Flory famly joined us a little later. Evie watched Sam play "Splosion Man" with Francis and Mark on the new Xbox 360 S.

Annie and Aunt Robin:

It was short but sweet! We are looking forward to coming up to visit you guys next month!

A Visit With Kate

Before Kate went on her whirlwind tour of Memphis, she came over to our house for a visit. We all had fun walking around our street looking for dirt (Gavin's idea) and blowing bubbles from some neat bubble wands that Kate brought over. When it got too hot, we came inside and Evie wanted Kate to flip through books with her:

Gavin wasn't feeling photogenic, but Evie wanted to make sure her pet piggy was in this picture:

We had a great time catching up - it had been too long! We'll have to get together again soon!

Morton Arboretum

We finally had our first real visit to Morton Arboretum. We were here once in April, but I don't count that as a visit...I refer to that as the "Curious George Arbor Day Adventure" (click here for details).



This frog pond was a favorite, as it was last year.

I love this picture of Gavin peering into this pool:

"Just water in here, Mom - no fish!"

Evie was tired of water by this point, and just wanted her trusty pretzel snack cup:

Gavin was nowhere near being tired!

I had brought a change of clothes for the twins, but amazingly they didn't get soaked! I know better than to think this is the start of a trend, though - extra clothes will be included on future visits!

Brookfield Zoo

On Monday, we made our first visit to Brookfield Zoo this summer with Nana and Grandpa Cermak. It was not our greatest zoo outing ever, but with toddlers you just have to accept that there are good days and "off" days.

We started out at the carousel. Evie was thrilled to be there, danced to the old-time music, and waved her ride ticket in the air. Gavin objected to her dancing for some reason and shrieked until we stopped.





Gavin changed his mind about riding on an animal and decided to sit on the bench with me and Evie. We waited a long time for the ride to get going, so we practiced saying and signing "Go!"






Evie was all smiles!




Evie loved the butterfly garden - Gavin didn't even want to go in.

We wanted to see the new bear exhibit. Unfortunately, this polar bear was the only one we saw. We didn't see any of the bison or wolves that are supposed to be there. Maybe it was too hot and they were inside or something, but we did A LOT of walking and saw just this one bear and some butterflies.

Gavin had had it by this point and kept signing "all done." We were all hot and tired and hungry, so we just left and decided that next time we will concentrate on a smaller area. Although, we did have a fun time riding there and back, all of us together in the new minivan, taking it out on the highway for the first time!

Cousin Mark

Last week, my cousin Mark flew in from Seattle with his girlfriend Jelaine. We got to catch up over at Grandma and Grandpa Cordes' house. It was so good to see Mark (it had been about four years!) and it was fantastic to meet Jelaine.

Evie was shy at first (nothing new there) but warmed up after awhile. She even let Mark pick her up!

Mark and Jelaine:

Auntie Di and Uncle Brad:

Jelaine and Grandma chatting away: