Lolly

Lolly on Friday, October 29, 2010

We've been home for THREE WEEKS now...and I can finally say that Lolly is pretty much back to how she was before she got sick.  She has done amazingly well since we got home.  She is talking a ton (we could hardly get her to say a word when she was in the hospital).  Her strength has improved so much- after four weeks in bed, she had a very difficult time walking at first.  When we first got home, she wobbled a lot when she walked, and fell down several times because she just didn't have much strength in her legs.  She could not stand up from a squat or climb the stairs.  Now, she runs all over the place, climbs the bunkbed and treehouse ladders, and is a ball of energy.   

It seems like the ages that are the most difficult also bring the most cuteness- that's exactly how I would describe Lolly- she can be 100% difficult and 100% adorable.  We're trying to wean her from our previous [hospital life] parenting skills- the "You-can-have-anything-you-want-as-long-as-you-keep-living" parenting philosophy had to end at some point, but Lolly wasn't particularly thrilled with it ending when she came home.  In the hospital, when she was finally allowed to eat and drink, she was given endless options.  "You don't feel like drinking water?"  "That's okay- how about some juice/pop/gatorade, etc..."  Now that we're back at home, she's not very impressed that I'm not playing the part of short-order cook, but slowly and surely, she is getting better and less spoiled. 

She is the most funny/spunky/crazy little girl, and she loves to make us laugh.  She loves dancing (Party in the USA is still her favorite) and being silly.  She loves playing with "the brothers" and helping baby Sammi.  She loves having her nails painted, but would much rather do it herself (like she got to do in the hospital).  Her favorite thing to do in the hospital was color, and when she was there, everyone applauded her artwork, no matter the canvas (remember this?).  She's still very creative with her canvas choice, but can't figure out why I'm not as excited as I used to be about her artwork on walls/books/toys, etc. 

She has turned into a very sweet, very happy girl, and I think, in a lot of ways, her hospital experience has made her more patient and more submissive and even more cheerful.  She wakes up so happy!  On the very rare occasion that she wakes up before me, she'll walk down the hall, knock on my door, and call out, "Mom!"  I love it. 

Because of her pancreatitis, Lolly was sent home on a low-fat diet.  Good thing that her favorite food is CHEESE!!!  When we first got home, she asked for cheese for breakfast, lunch and dinner (probably to make up for her month-long cheese deprivation).  Being dairy farmers, we're happy that she loves cheese, but cheese for every meal doesn't fit well with a low-fat diet. 

Lolly has weekly blood draws at the local hospital to check her kidney function, pancratitis, and red blood cell count, and everything is improving.  We love the "blood draw ladies" at the hospital here.  We've been going to visit them on a regular basis for years and years.  Trey used to have weekly blood draws for months and months, and we see our "blood draw ladies" every time we go to the ER or when I go to the hospital to deliver a baby (both scenarios are quite frequent, seems like).  So these ladies know our family well, and remember all the kids and their names.  We never leave without a fistful of suckers, stickers, and juice for everyone.  The kids think it's the greatest place on earth (especially those who get to go without getting poked).  Even Lolly doesn't mind too much.

Sammi (seven months now!)

Lolly loves to be with Luke, and he can make her laugh more than anyone else.  Whenever I hear her giggling during the day, I pause and express a silent "thank you" to my Heavenly Father for letting me hear that sweet sound again.  I know that it truly is a miracle that Lolly is alive today.  Not only that- but it's a miracle that she is alive and is eating/drinking/peeing/walking/thinking, etc. on her own.  I know that our Heavenly Father has a plan for each one of us, and I am so grateful that he allowed Lolly to live.  I know that it could have just as easily gone the other way, and several medical professionals told me that medically speaking, Lolly shouldn't be alive today.  Words can't express how grateful we are that she is alive.  We are so thankful to have our girl.

I am so happy to be back to being a mom again to ALL my kids.  It has been so crazy though!  I think I'd forgotten how wild and loud life with five kids really is.  Every day when I look around at the dishes/laundry/messes I remind myself how grateful I am to have five little people to cook for and do dishes, wash and fold piles of laundry, and clean up after. 

For anyone reading this blog, please know how grateful we have been for your support and encouragement.  I can't tell you how much it meant to me to have so many people, far and near, tell me that they were following Lolly's blog and praying for her and our family.  We truly could not have made it through without the love and support from so many family members, friends, and even strangers who offered help and support in so many ways.  It was so humbling and uplifting.  There were so many days at the hospital when we had nothing but bad news and sad things to think about.  On those days, I lived for the moments where I took a few minutes to read all the encouraging comments and emails and texts from so many wonderful people.  They literally kept me going and made me think I could keep going for Lolly's sake.  It might take me months or years, but I hope, at some point, to personally thank all of you for what you did for me.  But for now, I hope a big blogged thank-you will do. 

((THANK YOU!!!))

I hope to download this blog into a book for Lolly as a keepsake- all the pictures, post and comments.  Because of that, I still have many pictures I'd like to post...sooner, rather than later, I hope!  Be back soon (but don't hold your breath).

What's been going on (Hint: all good things!)



Pictures from last night, Sunday, October 17, 2010

Was it really five days ago that I said, "maybe I'll have time to post later tonight?"  It's been nearly impossible to find time to blog, so I'm sorry for those of you who have mentioned you've been waiting for an update. 



I was super busy the whole time Lolly was in the hospital.  It seemed like I only had a few minutes each day to post an update.  But all that time, I had two full-time nannies (my mother-in-law and my mom), a full-time nurse for Lolly, laundry service (my mom), housekeeping (to clean our room and change Lolly's sheets), and a personal chef (the Rainbow Cafe at the hospital), and I still barely had enough time to blog. 

These days, I'm the full-time nanny, nurse, laundry service, housekeeper, and personal chef to seven hungry mouths, not to mention, secretary, bookkeeper (I've got a stack of papers a mile high), and chauffeur.  And I'm loving it!!!  I am so grateful to be back, doing what I love to do, but have found it very difficult to find time to blog.

It's kind of like our family took a month-long vacation- to four different locations (boys at Grandma's, Ben at home, me and Sammi to my grandparents' SLC apartment, and Lolly to Primary Childrens Hospital)- a vacation we hadn't done any preparation for.  Our house and yard looked great when we walked in (thanks to some amazing friends!), but the moment we moved back in, we brought a tornado with us.  It's still going to take a while to get things under control.

We've now been home for one week, and Lolly is doing so well.  It truly is amazing.  She has regained much of her strength, and is walking well now (after 3 1/2 weeks in bed, her legs were very stiff and weak).  She's still a little shaky, and falls down occasionally, but is getting stronger every day.  She still gets stuck when she squats, and needs help up occasionally, and she doesn't even attempt to climb up the stairs (although she does slide down). 

We could hardly get Lolly to say a word at the hospital, and her manners were nonexistent (if she wanted something, she'd usually scream), but I've been amazed at how quickly she started talking again at home, and how many new words she's picked up since she's been home (she started talking a lot right around her 2nd birthday in July).  She even says please and thank-you most of the time now.

All her life, Lolly has taken a long time to warm up to people.  In the past, she'd refuse to let people carry her sometimes, even if she knew them.  During her hospitalization, she developed major trust issues.  She really didn't know who she could trust, often cried when people came into her room, and was smart enough to not make eye contact with any doctors.  Since returning home, though, she has become very cuddly, and wants to be held (we love it!).  She lets almost anyone pick her up, and has become quite pleasant to be around!  On Friday, we were at my in-laws' house with a bunch of relatives.  I have a lot of nieces that love babies, and have always been so nice to Lolly, but she usually won't let them carry her or play with her.  On Friday, the came up and announced that Lolly had actually let them carry her!!!

Lolly's sleep schedule was so messed up in the hospital- I was really worried about how she'd transition at home.  She has done great!  She was thrilled to be back in her own bed, with Luke as a roommate, and takes long naps in the afternoon and sleeps all night. 

I took Lolly to our family doctor last Tuesday, and he said that after reviewing her chart, it's a miracle that she's here.  The last patient he saw with HUS that wouldn't wake up (like she did the first four days)- was about 2-years-old, and did not survive.  I've seen many medical miracles in my life, but I rarely hear medical professionals label them as such.  It truly is a miracle that she's here today.

Our experience with Lolly has, of course, caused me to take time to reflect on and appreciate all my blessings.  All this week since we've been home, there have been so many moments during our days where I'll just stop and think, "I'm so grateful to have this moment with her."  Listening to her giggle, getting her out of bed in the morning, and watching her get excited about little things like going outside to play or making cupcakes have been small things that have brought me great joy.  One of the many blessings I've gained from this trial has been my improved ability to appreciate the small things. 

Like these fabulous legs:

They are the cutest thing ever- skinny two-year-old legs in stretch pants.  Love them.

And the other cutest thing ever:

The kids have all transitioned really well.  I had been especially concerned about Luke while we were in the hospital.  His life (next to Lolly's) was changed the most- he was without his home, his mom, his best friend and roommate...and although he really loved his time at Grandma and Grandpa's, he was a bit stressed out from the whole situation, and more than anyone, told me how much he really wanted us all back together at home.

But as you can see...

and

So we're happy.

The big boys love having Lolly back:

And Sam loves having her daddy back:

And the cows love having us all back.  Here they are, staring at everyone on the trampoline:

It's so good to be back!

Home!

We are all so happy to be home, and we're all very busy, adjusting to life again as a family. Lolly is doing SO WELL!!!

I've got lots of fun pictures to post...hopefully later tonight!

Home

Today is 10/10/10

TEN is my new lucky number

WE'RE GOING HOME

ALL OF US!

TODAY!!!!! (hopefully leaving just after noon!!!)

One MONTH ago today, Lolly got really sick from E. coli.

After 29 days in the hospital, we're FINALLY, FINALLY, FINALLY going home!

We feel so blessed!

Hallelujah!

The "H" Word

We think it might be TOMORROW (Sunday)!!!!

{holding our breath, crossing our fingers, trying not to jinx ourselves}

Everything will be dependent on Lolly's lab results (from her blood draw) tomorrow morning- the doctor will come in early to let us know the plan.

It's hard to believe that this might REALLY be happening!!!

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.