Picture Dump

Today (October 8, 2010) has been a great day for Lolly so far. My mom slept here last night, and said that Lolly had a good night, but that she woke up on the wrong side of the bed. She gets really frustrated with us (me, mom and the nurses) because she can't (or won't) communicate what she wants. She turned two at the end of July, and just after that, her language skills took off. She could say almost anything (although sometimes Ben and I were the only ones who could understand), and her frustration with not being able to communicate was decreasing. Since she's been in the hospital though, most of the time, she chooses not to speak. Occasionally, she'll respond with a "uh-uh" when we try to figure out what she wants- her "uh-uh" meaning "no" sounds almost identical to her "uh-huh" meaning "yes," which leads to a lot of frustration for her and for us.

If she's in a really good mood, we can get her to say some words, which is nice. Her little voice was hoarse and very quiet for a very long time (from the day she was intubated), and it's taken a long time for that to come back.

Lolly has switched out her blue police car for a little red hot rod that she found elsewhere in the hospital. She's also been doing a little walking!!! After nearly four weeks in bed, her muscles are very weak. Helping her walk is very much like teaching a little baby to walk- we have to hold both of her hands, and she keeps her legs very stiff. She can stand, holding onto things, for just a few minutes before she starts to tip over- she's not really strong enough yet to squat down. It's cute but sad to see- she's really only been walking for a few months! Our kids are pretty late with their gross motor skills. Cousins their same age usually run laps around them while they are just learning to roll over. :) Lolly walked on her knees for months and months before finally trying "feet walking" at 18 months. Hopefully, she'll regain her energy quickly, and be up and running with "the brothers."

The doctor said that the only thing keeping Lolly here right now is her inability to drink enough fluids. She'll take a few sips here and there throughout the day, but isn't really interested in drinking (a big change from when she was DYING of thirst several weeks ago). She has to be taking in 36 ounces a day, and right now, she's probably drinks less than 5 ounces (any fluids she doesn't drink, she gets through an IV at night). Come on, Lolly, DRINK!!!

Ben and the boys are on their way right now! Can't wait! Before this weekend of fun, I'll finally post pictures from last weekend, when they were here:

Friday, October 1, 2010:

Luke and Lolly in the playroom- she was cracking up at the things Luke was doing!

Trey was scheduled for a check-up with his cardiologist, Dr. C, in November, but since we were already in town (as in living at the hospital) he worked Trey in on Friday, October 1st. It was kind of neat because that was the exact day (October 1)- seven years earlier, that we met Dr. C. Trey was Life Flighted, and Dr. Cowley was his admitting doctor. He was actually the one who sat us down to tell us what was wrong with our new baby boy. We LOVE him. He is the best doctor in the history of the world.

He was so pleased with how well Trey is doing (he had run four miles in the walk-a-thon at the school the day before, then played football in the afternoon). Trey is doing better than we could ever have hoped!

Lolly's HD cath site (for dialysis) always looked bad- even after a dressing change- and they ended up pulling it two days later:

After visiting the playroom, Lolly came back to a stack of packages and some awesome gifts- sweet sunglasses (thanks, Kyle and Alli) and more chapstick tubes than she could possibly count (thanks, K&A and Mrs. M). At the time, she couldn't eat or drink anything, and she was in HEAVEN with all the flavored chapstick that some very thoughtful people mailed to her. She LOVED it!

The first time she got to listen with a stethoscope, she thought it was hilarous!

Fancy pink princess gloves, courtesy of Mrs. M (Ty and Trey's kindergarten teacher...we love her)

Luke had such a wonderful time in the playroom (messy art!!!):

Isn't my mom adorable? I appreciate her so much. She's done so much to take care of me (and my girls).

Trey, my cousin, Laurie and Sammi:

Saturday, October 2, 2010:

In the evening, Ben stayed with Lolly at the hospital and the boys and I met up with my cousins, the Funk girls, to visit Discovery Gateway (the children's museum) in Salt Lake (Primary Children's hooked us up with free passes!).

We chose the worst possible day to drive downtown and the worst possible road to drive down (what was I THINKING?????)- we drove right past temple square after General Conference got out. It was NUTS!!! I was stopped so long I had plenty of time to take pictures.

We had the best time at the museum. First thing we did? Put on our own little play:

Mike, my cousin Sarah's friend, was a good sport, and played the knight, in a size 6 children's costume:

My cousin, Emily, as a news anchor:

Tyler forecasting the weather in the green room:

Emily, Luke and Amy playing with the water:

Lolly would have loved this:

Thanks Funks (and Mike)!!! We love you guys!

That night, back at the apartment, the kids kept begging my parents to tell them stories (we were lucky enough to have my dad here for the weekend). Mom and Dad told them story after story about their childhood and about me and my siblings. I loved hearing the boys laugh and laugh. They were having such a good time that I let them stay up way past their bedtime.

My mom and Sammi:

Luke and Ty, listening to my dad:

Dad and Trey:

Sunday, October 3, 2010

We got to see a lot of Ben's family, and some friends from home (thanks, Megan and Emery). Ben's parents, who have been taking care of the boys for weeks!, Aunt Joelle, Uncle Greg, and Aunt Caroline all stopped by.

Lolly and Ben:

Alan, my FIL, Ben and Lolly:

Sammi (oh how we love her!):

Out for a walk:

Both girls in one wagon (in the elevator):

Sunday, October 3rd was the SEVEN year anniversary of Trey's heart surgery, when he was one week old. He had his baby blessing in the NICU (Newborn Intensive Care Unit) just before they wheeled him away for surgery) that day. I wish those nurses could see him now (especially the Life Flight nurse who said- to a family member- that if she had a child with HLHS, she'd opt for compassionate care at home until he passed away, instead of putting him through the three surgeries). Is it just me, or does this kid look happy to be alive?!?

Family photo, down in the hospital lobby:

Thanks to my friend, Celia, Lolly has the Best-Dressed IV pole in the entire hospital:

Saying goodbye to the boys on Sunday afternoon (Luke with his "hospital buddy"):

Tyler:

My mom and dad (they're awesome):

Monday, October 4, 2010

Nurse extraordinaire, Jamee (we LOVE her), let Lolly paint her nails (Lolly was in heaven!):

I've been meaning to write about Jamee for a long time. It's hard to know to say how grateful we are for her. A friend of mine told me this quote: "Coincidence is God's way of remaining anonymous." Mom and I really felt like it was a total blessing that we got Jamee for our nurse when we did. It was a really frustrating time- Lolly had just been moved back to the floor, from the PICU, and she still wasn't doing well. We were frustrated with her progress, as well as a nurse, who hadn't been a very good patient advocate for Lolly. All the other nurses call Jamee a TIGER- they all say she is the most amazing patient advocate they've seen. She is highly respected among the nurses in the unit, and I'm sure by all the parents. She is not afraid to stand up to any doctors or question hospital protocol if it is in the best interest of the patient. She is truly an amazing nurse, and it takes a LOT to impress me (I've dealt with well over a hundred nurses in my day). Believe me, she's amazing. {We love you Jamee!!!}

And it didn't take long before we made the connection that she grew up in the same little Idaho town as Ben's family- Ben's mom and her mom were very good friends. Small world!

Lolly showed our appreciation to Jamee by offering a free manicure:

She was very generous on the nail polish:

Tuesday, October 5, 2010

Lolly loves to go to the playroom to do crafts, but often ends up getting very frustrated. I don't know what she wants, and she doesn't know how to tell me what she wants, so that makes two of us who are frustrated. But we always have a great time before the frustration sets in!

My dear friend, Kourtney, who I haven't seen in 11 years, since we graduated high school, came to visit me! I was so excited to see her! It's amazing how, with some people, even after a very long time has passed, you can still pick up just where you left off. It was great to visit her.

We made Lolly sandwich:

And the beautiful blanket on Lolly's lap (that you can barely see) is an amazing princess quilt Kourtney's mom made for Lolly (thank you!).

Word of Lolly's excellent skills spread quickly, and later that night, she was back to painting nails again:

This time, it was Lauren's turn:

Then Travis came in, but Lolly REFUSED to paint his nails. She had been anxious for more customers, but she wouldn't even look at him. It was too funny.

He tried hiding his face while she painted, but she still refused. Finally, Lauren did the job for her:

Later on, I put on Lolly's favorite dance song (the one she was dancing to in the kitchen the night before she got sick)- Miley Cyrus' Party in the USA (a personal favorite for me, as well- I'm not ashamed to admit!). She got a huge smile on her face, and started grooving- in her bed. What else could be do but turn the music up and have a dance party in our room? (Can you see why a tiny part of me is going to miss this place?)

My dear friend, Diahan, came, and brought the most adorable handmade puppets for Lolly. She loves them:

The girls (do I look like I've lived here for a month or what?):

October 6, 2010

Waiting at the dentists' office, just down the hall (she'd just taken her first steps in 3 1/2 weeks a few minutes before, and needed a rest):

More nails to polish (thanks, Brittney):

And Grammy (her second time):

Lolly has actually gotten quite good (since Jamee's paint-up-to-her-knuckles manicure), and is really careful now.

Having her vitals checked before bed by nurse Michelle:

Lolly HATES having her vitals checked. DESPISES it would be a better description. It was awesome because for the first 3 1/2 weeks here, Lolly had to have them checked every FOUR HOURS- around the clock. The other awesome thing was that whenever she got a blood transfusion (which happened nearly 10 times), she had to have her vitals checked every 15 minutes, then every 30 minutes, etc, the entire time!). Pure awesomeness when you're dealing with a two-year-old!

Well...that about does it for now!!! I'll have several thousand more pictures in the next few days, though.