Visiting the Florys

On Sunday we drove up to Gurnee to visit our good friends Mark and Robin and their kids Annie and Sam. Evie warmed up to Uncle Mark right away, espcially after he played the piano for her. (She is making her "I'm not looking at you face" at me, not at Mark!)

Then Uncle Mark showed her the fish, and then she got to pet one of the cats...she was thrilled!

"Where did the cat go? I thought he was right here!"

Gavin had a great time playing with Annie. He started saying her name right away: "Ah-nee!" He followed her everywhere, except into the basement.

Evie and Francis:

Robin and Sam:

Aunt Robin read to Evie as she ate her chicken nuggets:

Mark, Francis, and Annie spent a lot of time in the basement, playing a karaoke game on Xbox:

Here's Francis and Annie singing to Taylor Swift, and all the other kids are watching (Evie is on the couch behind Francis):

As Robin said, we wish the road between our houses wasn't so long! We hope to get together again soon!

On another note, Evie saw her nephrologist (kidney specialist) on Monday. Uncle David had come over to watch Gavin so Francis and I coud both go with Evie, but once Evie was in her uncle's lap, she didn't want to let go! When I told her it was time to go and picked her up, she started to cry. She only stopped when we decided to have David go with me and Evie, and have Francis stay home with Gavin.

The doctor thought she looked good and he was pleased with her bloodwork results from last week. Evie will see her cardiologist next week, and have a diagnostic angiogram on August 23. Whatever the angiogram shows will help us determine the next step for Evie.

Haircut & Gymnastics

Last week I took Gavin for a haircut, and our hairdresser cut it shorter than usual. She used the clipper/buzzer thing, which Gavin wasn't sure about and then when she was almost done, he decided he didn't like it. We'll ask her to use the scissors next time.

I think he still looks super cute, but he did lose his curls. I think I'll let it grow out a bit before the next haircut!

The next day, Gavin relaxed with Nana in the fold-up chairs - Francis found one for Gavin that has Lightning McQueen on it!

After Evie ate her chicken nuggets, she flipped through my magazines:

Evie did really well at gymnastics on Saturday. I got her to separate from me (during class) for the first time EVER. She & I sat on the trampoline and bounced, sitting side by side, without me holding her! And then I got her to stand up, hold both my hands, and bounce with me. Not jumping, just bouncing, but still that was a huge step for her. I also convinced her to stand on the balance beam while I held onto her - another first! She is definitely feeling better! Gavin, as usual, tore around the obstacle course and the bouncy house like a cyclone. Francis was worn out from running after him!

Slippers

Evie saw her pediatrician and her pulmonogist last week, and they both said that she's doing great. Last week I tried to keep all of our activities "low-key," and just do whatever the kids wanted to do. After the previous twelve days, I thought some plain old "together time," without rushing around, would be good for all of us.

We had a couple of rainy mornings last week, and Gavin wanted to practice opening and closing the umbrellas that Nana Cermak gave to him and Evie...for about 45 minutes! OK, no problem. After that we took a short trip to Babies R Us to get new Spider Man toothbrushes for both kids. While were there, we noticed they had a full display of slippers, so they each got a pair and are ready for winter. I know it's only August, but finding the right size and the right Sesame Street character can be hit-or-miss!

Here they are playing with their new slippers - Evie has Elmo and Gavin has Cookie Monster:

Growing Appetites

Evie is eating really well since coming home from the hospital. Last week, she got to go to the grocery store with Francis (and Gavin, Nana, and Grandpa - but I stayed home). The lady at the deli counter gave her a slice of ham, and she ate it, plus the slice that Gavin didn't want. And every day since then she has eaten ham. I can't say I'm surprised, since I ate a ton of ham when I was pregnant!



Evie also started eating sticks of string cheese - something Gavin eats all day long. Here they are holding up their cheese:



And the tried and true chicken nuggets...Gavin suddenly wanted nuggets when he saw Evie eating them every day for lunch.



Here is a video of them eating their chicken and being silly:

Thursday Cuteness

Today we are going to see two doctors: Evie's pediatrician, for a follow-up to her hospital discharge, and her pulmonologist. We just happened to have the pulmonologist scheduled for this week, so that works out nicely. Evie will end up seeing all of her doctors in the next fourteen days. Gavin will just have to come along for the ride, but he doesn't mind as long as he is not the one getting examined.

As I mentioned, Evie had blood work done yesterday. Everything was within normal range, except for her BUN level (Blood urea nitrogen). This number has been elevated for a few months now, which is partly caused by one of her heart medications, and is not uncommon in children with heart issues. This is also part of the reasoning behind having her see a kidney specialist.

Here is another set of random pictures that I put together before Evie went into the hospital:

Morning reading time with Dr. Seuss:



Grandma and Evie wear their White Sox shirts:




Gavin and I share a moment:




Francis shows Gavin his new Nintendo DSi XL:




Gavin climbing on me at the end of the day:




A rainbow over our street:

Outside Fun

Evie continues to do well at home. We have several doctor appointments in the next two weeks, and Evie had blood drawn yesterday, so I hope all the docs can stay on top of the situation and keep her fluid levels properly balanced.

Below are some pictures I was going to post before Evie went in the hospital. It was a warm day, on the week before she was admitted, and we were relaxing outside with Grandpa and Grandma Cordes:

Happy to be Home

We are all so happy to have Evie home! As soon as she got home Saturday, she started playing with some of Gavin's new train engines. Then she stood up (or tried to) to walk to the bookcase. Since she had been in bed for 12 days, she was a little wobbly, but she wanted to do it! She also has slept really well in her own bed.




On Sunday for lunch Evie ate three chicken nuggets! Woo-hoo!



On Sunday, Nana and Grandpa Cermak took the kids to the park, and Gavin kept kissing Evie and patting her on the head (and she did not object). I think he missed her the most of all, and he couldn't quite express it.

Gavin is saying more than 60 words now, including "broken, fly, park, book, cool," and best of all, "David," as in Uncle David! Uncle David watched Gavin on Saturday and they had some great uncle/nephew bonding time.

Day 12 - Evie Comes Home!

Sorry I don't have pictures to post, but Evie got to come home today!!! Her potassium level was within normal range, so after the attending doctors talked to the nephrologist, they said she was OK to go home. I have to take her for bloodwork on Tuesday, but thankfully we can do that at our local hospital. I hope that more frequent lab work and more careful monitoring by he specialists will prevent this situation from happening again.

We are so very grateful to our whole family for helping out whenever help was needed, whether it was watching Gavin or trekking down to Hope to sit with Evie and encourage her to eat. Also thank you to our dear friend Laura who helped watch Gavin and has her own three little ones at home. We are also grateful to everyone for all the prayers that were offered - without that we never could make it through any of these situations with Evie. Now that she is home, we will work on helping her get stronger, eat more, and hopefully talk more!

Evie Update - Day 11

Well, Evie did not come home today as I had so optimistically hoped (hey, I can't help it if I am a "glass is half-full" person)! The doctors say she may come home tomorrow, or maybe Sunday. Her bloodwork showed an increase in her potassium, so they lowered the dose of one of her diuretics. At that point, the "wait and see" game started all over. I hope I can bring her home tomorrow!


Evie continued to eat well today (sausage, chicken nuggets, Cheetos). The staff nutritionist was pleased enough to say that Evie's nutrition is "fine." She has never said that to us before!

Evie discovered that she can bounce back against her pillows and shake her bed a little - enough that her greeting cards and photo magnets rattle! She thinks it's quite funny:

Evie Update - Day 10

Evie is officially off of all her IV medications! The ones she had been getting have been converted to oral doses. So now it is "wait and see," to make sure she is doing well on the converted doses. I have been told that converting meds from IV to oral is not an exact science, because IV meds are more potent and are effective in smaller quantities. This morning I was told, "we need to watch her for a day or two." Having her home is so close, it's killing me!

Evie's new favorite food is Cheetos, which is my fault. I just love Cheetos and I shared some with her yesterday, and that was all it took. I know Gavin likes them too, even though I have not given Cheetos to him on a regular basis. Maybe Cheetos will be my motivator for officially potty training Gavin. I think he's ready, because he recently started pointing to the front of his diaper and saying "pee," and he already points to his rear and says, "poop." (I know, if you don't have kids you probably didn't want to know that, but it is a really important step!)

Here is Evie holding up a Cheeto:




Uncle David has a co-worker, Francisca, who sent these two hair clips along with him yesterday. I clipped them on top of Evie's pigtails and she loved them! She is making a silly face, but she knows she looks cute:

Everybody who came into her room commented on how cute she looked with her hair clips. She was in a great mood today and ate like a champ! She ate three sausage links for Francis at breakfast (plus her Pediasure), and a chicken nugget and Cheetos for me at lunch. Then I gave her a bath, washed her hair, (and changed her sheets myself - in every hospital stay, I learn something that will help me when I become a nurse).

I can't wait to see what the doctors say when I arrive tomorrow morning. I am going to be really optimistic and bring an outfit for her to come home in!