Make-A-Wish

On Thursday, just before all of the excitement, Make-A-Wish volunteers came to our place. They had called me on the phone ahead of time to see what kinds of things Lucy liked and they brought her a really cool crown that lights up. She loved it, even though she couldn't see it.

They took Lucy into our room so they could interview/talk to her and ask her what her wish was. They try to keep the parents out so the child can feel free to say what they really want (we weren't sure how Lucy would do- she is only 2 1/2 and before they came Chad kept trying to get her to say "Alaskan Cruise" - don't worry, he was teasing).

When they brought her out they told her to tell us what she wished for.

Lucy: Ummmmm, Nothin'.

Me: No, Lucy tell us what you wished for.

Lucy: Shhh!

We tried for 10 minutes and she kept changing the subject.

When the volunteers left, I whispered to Lucy.

Me: What did you wish for?

Lucy: (in a very light whisper and a very big smile). Princesses....Disneyland!

She hasn't said anything about it since and when we ask her she still changes the subject.

I guess it is just a big secret!

She always does what he does...

The picture below is a bird with Harry Potter's scar and glasses.

Too bad I didn't get a picture of Jocey with a red scar and black glasses drawn on her face. Or even better, Jocey tackling Dallin with a marker, trying to draw glasses on his face.

Maybe she is the one behind all of the obsessions...

Good News

Lucy is home from the hospital, just in time to greet her siblings as they returned from their trip. There are a few things that I am concerned about that we will have to discuss with her Pulmonologist. I am hoping that the issues are caused from being sick and not the disease progressing. We will see. It wasn't an intense hospital stay but Lucy had small set backs everyday that kept us from going home. Mornings were rocky but by dinner time she was singing at the tops of her lungs and talking to everyone.

When our friend's from the hospital would see us, their reactions were all the same (Oh, No! You guys can't be here!) That's exactly what I felt too. They took care of us though and we are so happy to be home.

Everyday when I would say good morning Lucy she would look at me and say, "I want to go home, take it off my foot" (her IV) and then she would continue to boss me and everyone else around all day! She even talked us into putting her fountain in her bed with her so that she could "wash my hands".

So we are now one happy family under one little roof, thank heavens!

Overheard

Chad drove to Utah with D and J. They stopped at a hotel around 1 a.m. The kids woke Chad up around 6:30 a.m.

Kids: Hey, Dad what country are we in?

Chad: We're still in the United States, but we are in the state of Nevada.

Kids: Ohh!! What language do they speak here?

Jocey belts, er I mean sings Katie Perry's Firework song. Let's just say, she puts a lot of heart and soul into it. Dallin and I were walking home from the park, I think. We were talking about Jocey's singing.

Dallin: I don't think she's gonna make it to the red carpet.

Thursday...

was actually a great day. I mean, it started well but didn't end very early or very well.

Lucy's therapists came over to make adjustments to her stander.

Lucy is tall, tall, tall.

Lucy is always wanting to walk or run or hop and so we had the idea to actually help her walk.

She absolutely loved it and cried when we had to stop. She even got to wear Jocey's shoes because her AFO's were slippery (see very large, old tennis shoes).

Then Dallin and Jocey helped Lucy bath her princesses in her new fountain. Aunt Melanie got this for Lucy because she was wasting too much water in the kitchen sink.

We packed Dallin and Jocey because they were driving to Utah to attend their Aunt Deanna's wedding that evening.

Make A Wish stopped by to have a very personal and special meeting with Lucy. She won't tell us what she wished for (more on that later) but she got the coolest crown that has a flashing light.

Chad left with Dallin and Jocey and a few hours later, we started Lucy's last treatment of the day before we put her down.

She wasn't doing very well.

We took her to the ED. Bad news, there were tons of people and even with our special by-pass triage letter, we had to wait.

Chad and the kids started home but I told them to keep going. I didn't feel like things were that urgent (and I use urgent as a relative term).

After sitting in the ED for 5 hours, Lucy was admitted to the PICU.

2 days later, a collapsed left middle lobe (lung), a sore tummy and a sad Lucy we are still in the PICU.

I am positive about things and hope that Lucy can get some sleep so she can come home, she really wants the IV out of her foot so that is motivation for her:)

Instagram Snapshots

Lucy says she is a ballerina and "ballerina" is code for spin me really fast. I don't have the stomach for this activity, but, anything for you Lucy.

I gain more understanding everyday about the difficulties that SMA brings. Lucy has been complaining that her hand/finger hurts so... Lucy's newest piece of "equipment" is her pink (her choice) hand splints. We will see if these help give her hands a little stretch and make her more comfortable.

A picture of Lucy and me.

I don't have many of these pictures because I am the non-professional photographer of the family. Here is one for posterity.

We told Lucy that she looked beautiful and she requested a crown to finish her look.

Oh, we just love her and the amount of joy she brings to our lives is immeasurable.

Also...

We really miss Chad, he has been gone all week.

I love this post about my Beautiful Grandmother.

And my heart aches like Victoria's.

Happy Day Pony Ride

On Saturday, we went to the fair. I didn't think that the San Francisco Bay area had fairs but they do! Melanie, my sister, talked us into going and she took Dallin and Jocey earlier in the day and she spent the whole time with them. I think that her patience grew thin as the day went on and she was running out of cash because D and J would start playing games while her back was turned and then she would have to pay for it.

After Lucy woke up, Chad and I took her and she was pretty excited. She got to touch the tarantula that Jocey held and I showed her all of the farm animals. It is a little weird to me that my kids have to go to a fair to see farm animals and I grew up with farm animals. Anyway, Lucy loved the chickens and she thought they were funny. The little tent that held the chickens and rabbits was a little stuffy and she started to struggle so we didn't stay long. We walked through the building with the larger animals and Lucy was soaking it all in but she did not want to touch anything.

Her favorite was the horses that the kids could ride on. She saw Dallin and Jocey riding them and she asked, "Can I ride a horse?" I told her that it wasn't the best idea since she can't sit up on her own (we can't say NO because she throws fits). The woman saw Lucy asking me and she asked me a few questions about Lucy and then she said that if Chad wanted to hold her on the horse and walk around that it would be okay. Lucy knew what was going on and was really excited.

I have to admit, I held my breath the whole time the cowboys held Lucy while Chad jumped the little fence so that he could walk around with her but it all worked out and Lucy loved every second of her ride on the little pony.

Happy Day Pony Ride printed out a picture in about 5 seconds flat and gave it to us before we left (a $15 picture, that is). It was so, so sweet of them and it made our trip to the fair a very memorable experience.

I have a phobia

And she doesn't.

I don't even know if I can trust her anymore...

pictures made possible and snapped by Aunt Mel

I couldn't have been able to handle watching this with my own eyes

oh ya, AND she held a tarantula all by her little self.