A Thanksgiving Trip

I don't know why we keep fooling ourselves into thinking that going somewhere with kids will be a vacation because it never is.  We will just call this "vacation" a trip.  Even though it was a trip and it was very tiring it was worth it all!

The kids were SO excited (to put it lightly) for this trip and they were counting down the days.  Lucy's Dr.'s gave us the OK and I gathered some extra machines from our medical supply company and we packed, what seems like our entire place, into an RV.

The morning we left, Lucy was ecstatic. Oh and we fit her potty
chair into the shower and it worked perfectly.

Because, right now, an RV is the only way we can travel comfortably and conveniently for 11+ hours.  We were able to do all of Lucy's treatments on time and without a lot of hassle.  It was an awesome way to travel (except not the gas mileage, it was an ugly 5-8 miles/gallon)!

We ended up sleeping at a rest stop and then finished our drive to St. George Thanksgiving morning.  We were thrilled to see our family.  

My sisters girls, are so sweet with Lucy and I just loved
watching them interact with her.

This little boy is Celeste's youngest, Ethan.  He was so adorable with Lucy.  He would lay by her and watch her shows, or he would bring toys to her that he had stuffed into his pocket and once when he was jumping around Lucy, his  mom told him to be careful and he exclaimed "I LOVE Lucy!" as if he was saying, I wouldn't dare hurt her!  It melted my heart to see our family interact with her.

Whenever Aunt Celeste is with Lucy, she helps Lucy dance.  Here they are
copying all of the moves of Angelina Ballerina, Lucy thinks it is tops.

Aunt Alisa, holding Princess Barbie Popstar.

Growing up, we would play a lot of sports together as a family and now that our numbers have multiplied, it is even more fun.

St. George is beautiful!

When Lucy was watching everyone bat, she yelled "Mom, how bout me?"  I didn't see why not so Lucy even got to play.  She was giggling the entire run around the bases and her cousins refused to get her out so we always made it home.

We also went to the St. George Temple for the Christmas lights.

Dallin and Jocey kept yelling, "This is the best vacation ever!"  They really love their cousins.

So, that was that, it was so nice to be with family and so wonderful to remember and celebrate all of the things that I am grateful for, which is many, many, many things.

SBIM 2012

We ran the SBIM on Saturday with GSF and it was really amazing.  I always have a hard time fundraising but all of you helped me raise $3,355 and that doesn't include all that Team Lucy raised!  The entire GSF team raised $135,000, which is beyond incredible.  I know where this money goes and I know that it is helping those who deal with SMA and it is helping researchers get closer to finding a cure.  I thank you all for your support, it means so much to me and to those who benefit from these funds. 

I am always blown away by the support of my friends and family and this year, many of them went so far to run the 1/2 marathon and full marathon.  They spent so much time training and then they took time away from their families to travel for the race.  It made my heart so happy to have so much support and it made it so much more fun too.

These are my friends,  I always ask my self how I got so lucky to have so many selfless, loving friends, and this is only a few of them... 

 Jennifer, Victoria, Me and Kate.  All SMA mom's and it is always so comforting to be in another SMA mom's presence.  There were 9 SMA families at the race and so I got to meet several other families.

This is Jocey telling Victoria about her nail salon, probably.

Lucy didn't sleep at night and we were her night nurses so we didn't get much sleep either.  During the race, I was hoping that Chad and the kids would be at mile 8 but they just missed me.  They met me at the end, though, and it was fun to have them there.

 Team Lucy, except for cousin Matt.  He ran the full marathon and we didn't even get to see him or his wife Elyse, which made me so sad!

Fact: My friend, Cassie (in the white shorts), is 6 months pregnant and she rocked the half-marathon and probably could've ran the full.  She is a superstar.

 My family.  Cousin Amie flew from Boise and drove down to SB with me and the kids (total trooper).  She got to meet Lucy for the first time and we just loved the time we got to spend with her.  Crystal came with her family from St. George, Angela and Thomas came from AZ and hadn't trained very much (Angela has IT issues) and they all did awesome!  Mel had to put up with Chad in the car, they drove down together after work.  

Jocey talking to Gwendolyn, I think G had enough of Jocey and she would just closer her eyes (how she says "No")  when Jocey would come and drill her with questions- she can be a little much sometimes.  We love Gwendolyn and we were so thrilled to see her "run" with Bill and Victoria.  It was heart-warming! 

For me, the race was great.  Every mile marker, I just kept thinking, I am so glad I am not running the full marathon today- I recognized every part of the course and that memory of last year is just a little too fresh still.  I wasn't too worried about finishing the race so I pushed myself a bit- I got a little worn out about mile 9 but there were so many spectators yelling "NEVER GIVE UP!" and I thought of Bill and Victoria pushing Gwendolyn in her first 1/2 marathon.  I also thought of Lucy and all of our special friends with SMA and how grateful I am that I can run and breath and push myself and that I can do something for them that they can't do for themselves.  What an amazing blessing.  I was running out of gas the last mile and one of the Never Give Up runners I talked to at the beginning of the race had caught up to me, nudged my shoulder and said, "come on!" and he helped me push myself to the finish line (time: 1:39).  It was such a great weekend and I am so grateful to be surrounded by incredible, supportive and optimistic people.  The Strong family is an inspiration and I am so happy to be a part of something bigger than me to help these children (and adults) that I love so much!

You can read my cousin Amie's account of our experience here.  I always love reading her blog.

Bad Day

Taking care of Lucy is scary, we are fortunate that scary events (or events that we aren't used to managing) don't happen as often as they could.  Well, the other day, two scary events happened and I am amazed how Lucy handles them...

1.  Lucy needed to go potty so I sat her on her toilet.  When she was done she hollered, "Mom, I am done!!"  I was wiping her bum (this may be TMI) and noticed I needed to wipe further back on her bum so I lifted her legs a little (you know, how you do when changing a diaper?)  Well, that extra weight on top tipped her toilet seat over and the head support fell back, dropping Lucy's head back and her body off of her toilet.  My initial reaction was to lift her legs up because I was already holding onto her legs.  Well, Lucy was now hanging upside down.  I kept apologizing to her because her mask was falling out of her nose and when she doesn't have a good seal on her mask, it makes it very difficult to get the air she needs.  She had spit coming out of her mouth and I knew she needed suctioned.  I was trying to just lay her down but I had poo wipes in one hand and her back was arched so I was trying to figure out how to lay her down without hurting her (and I was worried I was hurting her already).  I finally set her down on her side/back, cleaned her up and then suctioned her.  Then I put my face right in front of hers and said, "Lucy are you alright?" She had a blank stare the entire time... and she started to laugh.  She thought the whole ordeal was hilarious.  I was just glad she was okay.

If that wasn't enough for one day...

2.  Whenever we go somewhere, I take Lucy's machines, bags and my purse to the car and then I make another trip with Lucy.  My hands are always full but I have done this same trip a million times and I always do the same thing, put Lucy in her seat, throw my keys to my seat, buckle her up, shut the door, walk to my door, open it and then go.  Well, I shut Lucy's door, walked to my door and it wouldn't open!  I kept thinking, "No, this can't be happening" as I checked each door.  I don't know how it happened because I can't lock the doors with the keys unless all doors are closed and the keys were in the car when I shut Lucy's door- I don't remember doing this but I think I locked the door manually when I shut the other front door, before closing Lucy's door.  I started to freak out and checked inside to see if Chad left his spare at home.  I called him, it would take about 25 minutes for him to get home, called locksmith- they said it would take 25 minutes.  I was supposed to pick up the kids from school, called a 3 friends and no one answered.  My friend, Kati, called back and said she could pick up D and J.  Then she gave me the best advice (I wasn't thinking clearly) she said to call 911, they will be there in two minutes.  I called 911 and I got "we are experiencing a high volume of callers..."  I just wanted to scream!  They finally got on the line and transferred me twice and the firemen were then on their way.  The entire time (which was about 15 minutes), I was peeking through the window at Lucy, asking her if she was okay.  I told her to "not choke" and I was ready to break a window if she did.  She was calm and I could see her eyebrows go up and down when I asked her if she was okay.  When the fireman came, it took them 2 minutes to unlock the door.  I opened Lucy's door, suctioned her (she had a bunch of spit coming out of her mouth-she does pretty good at pushing it out but she was still recovering from pneumonia, which made me really nervous).  The first thing she said to me was "I am so sorry that you got locked out of the car!"  Thank heavens for the MP firemen, who have come to our rescue several times and for my dear friends who do and care so much for us.

I just felt horrible but Lucy's calmness and forgiving heart made me feel so much better.

Halloween

Halloween is just a busy day!  We had plans to carve cool pumpkins but it turns out that most everyone carves their pumpkins before Halloween and I searched several stores looking for pumpkin carving kits but they were all sold out.  Lucy wanted "just one big triangle" on her pumpkin.  I won't tell you what Chad had to say about that... Lucy wasn't feeling well enough to go trick-or-treating but she did go to Aunt Melanie's trunk-or-treat for a few minutes so she got to dress up in her costume.  Dallin and Jocey went out with friends.  I ended up going with Jocey and her friend because her family is new to the area. 

Dallin in rare form...

It is hard for me to get pictures and videos of Dallin... Jocey begs for pictures, Lucy can't move and Dallin runs away (or makes faces) so this video makes my heart happy.  Dallin acts like this at home but NEVER in public so I was so surprised when I came around the corner and saw him dancing.  I secretly started taping but he didn't seem to care when he saw me and he didn't threaten me if I put this on my blog so... here you go!

Overheard TMI

So, besides having pneumonia, Lucy is very backed up.  We had been trying to figure out her stomach problems when Dr. Yuan finally did an x-ray and saw the problem (there weren't any other obvious symptoms).  Constipation is always part of Lucy's problems but we can usually maintain things with a daily dose of miralax.  Anyway, the poor girl, she deals with soooo much and she has such a great attitude...

Chad:  Lucy, do you need a suppository?
Lucy:  No, they feel soooo ugly.

Melanie and I were putting a liquid suppository in Lucy when she yelled:

Lu:  That is enough!

A while ago, when Lucy wasn't sick we were driving home from preschool.

Lu:  Mom, can you put a supp-os-i-to-ry in my bum crack so that I can go poo?

Several times during her most recent issues:

Lu:  I hate suppositories.

I was using the restroom...

Lucy:  Mom, what are you doing?
Cherisse:  I'm just using the restroom, I'll be right back.
Lucy:  Do you need a supp-o-si-tory?

She has also been trying to hide the fact that she needs to go potty (for fear/hate of getting another suppository).

Cherisse:  Lucy, do you need to go potty (I knew she did because the nurse left 5 hours ago and she had been asleep the entire time.)
Lucy:  Nope
Cherisse:  Are you sure?  It's been awhile.
Lucy:  Nope, I don't need to go.
Cherisse:  Did the nurse take you potty?
Lucy:  Ya, the nurse already took me, I already went. - I could tell she was fibbing.

I put her on the potty and 2 seconds later, she peed.

A Job

I am not sure how my kids got this job, but they love it.  Once a week, they (and when I say "they", I mean we) feed two St. Bernard's, B and E.  They are charming dogs and the kids really love being around them.  Lucy usually comes and I lay her on the counter so she can help me prepare their food and she can watch all of the action while steering clear of doggie kisses.

The only 'hard' part of the job is cleaning up the dogs poo.  They can't even stand it and they dry heave when they just get near some poop.  I can't help but laugh and then I take a big cut of their pay, because I am the one who picks it up.  Don't worry, they still get plenty, especially for the amount of work they do:)

A Birthday Party

So, here is my blogpost about the girls birthday party.  It wasn't planned very well (ahem, things get dropped when Lucy gets sick) and I didn't even finish my invites (and then so many people couldn't come last minute because of sickness- we told them not to come unless they were healthy because we are that afraid of germs- but it was all made better by Icing Smiles and Studio Cake.  They made an amazing cake for Jocey and Lucy and the girls were sooo giddy and excited about it.  Lucy wanted  My Little Pony cake and Jocey wanted a "dog" cake and they were both so happy!  

This is Lucy and our angel friend, Amy.

It was a beautiful day for a beautiful celebration.  Thanks again, friends and family, for making it such a special day!