Thanksgiving

at the beach.

Chad's Uncle Alan even cooked the turkey on-site. The food was delicious but the weather was cold (relatively). The ocean sent in a marine layer right after we started to eat, it didn't phase Dallin, he was too busy trying to destroy seagulls. What a fun Thanksgiving spent with the Martindales.

Cheese

One of our most dear friends helped us out by taking some family photos. She was awesome but sometimes there is only so much a photographer can do, especially for our family:)!

Maybe I don't need to point this out, but Dallin....oh buddy, we will be showing these pictures to lots of people over the years. There are only a few pictures that he is making a 'normal' face. Oh and does anyone know of a model agency close by? Jocey is a little too comfortable posing. I seriously don't know where she gets it from...Deanna? Ha.:)

She took a few so hopefully we can find some that will work!

Overheard

1.

Dallin:  Why don't I have any plaid clothes?
Me:  What?
Dallin:  Ya, all of the fashion kids have plaid clothes.

2.

The other night Chad took the kids to do some errands.  They ate some doughnuts while they were out.

Chad:  You guys, don't tell mom that we got doughnuts okay?
D &J:  Okay.

When they got home, Chad discreetly told me that they got doughnuts.

Me:  Hey Jocey, did you guys get doughnuts?
Jocey:  (looked me straight in the eyes) No.

A few minutes later.

Me:  Hey Dallin, did you guys get doughnuts while you were doing errands?
Dallin:  Looked at me, shifted his eyes once and said, Yes.

I told Chad what had happened, and mentioned that Jocey doesn't have any problems lying.

Chad:  Well, at least she is loyal.

So we concluded.  Dallin is honest but disloyal.  Jocey might be a liar but she is loyal.

At dinner, I confronted them.  They said they didn't want to tell me because they didn't get me one.

Me:  It's okay, I don't want to eat any doughnuts, they aren't healthy and I don't want my bum to get big (maybe that isn't the healthiest thing to say to your kids???)

The kids were laughing...

Me:  What, you think my bum is big?

Jocey:  Ummmmmmmmmmm, It's a little huge.
Dallin:  It just sticks out like this (as he sticks his bottom out like he is sitting in a chair).

3.

Chad took D and J to the park.  There was a group of three girls that were being mean to Jocey.  She just  took it like a woman and stood up for herself.

One of the girls came up to Dallin and was in his face.  Jocey came up, pushed her down and said, "Don't you be mean to my broder!"

Chad always handles everything with ease.  I'm sure there was an apology, etc.

He talked to her about it and when they got home they told me what had happened.  Then,

Chad:  So, Jocey what do we do when someone does something that you don't like?
Jocey:  I tell my feelings, not show them.
Chad:  That's right.  What would you have done if the girl pushed you back?
Jocey:  Uh, I just push her down again???

There are so many moments for teaching and learning:) Oh and Jocey really is a sweet girl, that is why the sassy things she says are so funny to us.  We are trying to teach her what is right and what is wrong.

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*oh and look for Lucy's cute face on the flyer:)

We're Ba-ack!

We are home.  Lucy slept all night.  Her hear rate was around 107 while sleeping and not the previous 178.  She tolerated her G-tube feeding.  She even nursed a little.  She is laying on my desk dancing like crazy to our iTunes list.  She is happy.  She is talking like crazy.  She is feeling better.  She is so happy to be home (and so am I).

We are so grateful that she seems to be over whatever she had.  We realize how fortunate we are every single time Lucy recovers from something.  Thank you for your thoughts and prayers.  Thank you to our heaven-sent friends who helped out with kids, meals and made thoughtful phone calls and sent kind e-mails.  We are so grateful to all of you.

I really don't want to be here...

but here we are.  There are several things going on with Lucy's breathing and eating lately.   GI returned my call yesterday evening and I explained the 'several things' and she said that she was very worried about Lucy and that she wanted me take her into urgent care or the ER.  This phone call was placed at 6:15 p.m.  At the 8:00 appointment, the Dr. we met with was very cautious in her exam and since Lucy's breathing is very rapid, she isn't tolerating her G-tube feedings, and her lung x-ray's were suspicious of a few things she wanted to admit us into the hospital.  Everyone knows that sleeping at home is far better than the hospital and it was about 10:30 p.m. so we tried to get out of it, but it didn't work.:)  Chad left me and Lucy here so that he could free our kind friend, Dave, to go home to his family.  At 1:30 a.m. we were waiting on the lab to come and draw some of Lucy's blood.  At 2:30 a.m., we were waiting for the RT to find an attachment for the bipap machine, this is kind of how the night went.  I don't know about you but I get grouchy when I am tired and even more grouchy when my baby is exhausted and is being prodded and bugged by kind Dr.'s and nurses.  Well, the night was very long and short.  We didn't get a lot of sleep and, well, I'm sure you all know what I am talking about.  We still don't want to be here and maybe that sounds bad but I am the one that is taking care of Lucy and I am doing all of the things that I do at home, except equipment is a little harder to find here:)  Lucy seems to be doing fine in most areas but they still want to observe and make sure things don't make a turn for the worse, and that is why I am not running out of here like a mad woman with my baby in tow.  She is very very tired and wants to sleep but her sleep is interrupted a lot.  Lucy is far more patient, kind, forgiving and trusting than I am.  Alright, I better get back to her bedside so that nobody wakes her up:)

12 Month Check-up

Lucy and Dallin playing Dinosaurs

Since Lucy wasn't well the week of her birthday we waited a couple of weeks to take her to her well-child check-up.  We feel extremely lucky that Lucy has reached this great milestone, there are several SMA Type 1 babies that don't make it a year.

Her stats as of 11.12.09:

Head circumference: 47.1 cm (93%)

Height: 31in (93%)

Weight: 19 lbs. 6 oz. (18%)

She received 2 of her normal immunizations along with 2 synagis vaccines (RSV prevention).  Synagis vaccine costs $2,000 a shot and she will receive the dose every month during the winter season.  We were worried about the flu because we weren't sure how she would react but we do know how she would react to RSV and it would be detrimental to Lucy's body.  I feel a little relieved knowing that her immune system is getting some boosts to help protect her from some sicknesses.

Eating:

Even though Lucy has been so blessed as far as her health goes (she has even dodged a few bullets), we do notice the disease prevailing in her body.  In September, Lucy was nursing, eating crackers, pudding and baby food.  In October she started choking on solids but she was still nursing most of the time.  Now it is hard for her to nurse and I am afraid that she has lost her swallow or it is very weak.  We haven't confirmed with a swallow test but it is obvious.  This step, for me, is a big one, and it is a step down hill.  It is something that I have dreaded since we learned of Lucy's diagnosis.  I have tried to be creative to find ways to help her continue her oral feedings (feeding Lucy probably takes 1/5 of my day) but there isn't much you can do at this point.  It really is torture watching my baby's body degenerate.  I wish she was walking, throwing tantrums, taking everything out of the bookshelf and kitchen cabinets, following me around crying because she wants to be held and maybe even pulling Jocey's hair when she gets annoyed with her (just kidding...kind of).

Sleeping:

The other night I feel asleep around 10:00 p.m.  At 7:00 a.m. I woke up, looked at the clock and quickly turned to Chad to have him check on Lucy.  Lucy has never slept through the night, in fact, most nights Lucy and I would be awake most of the night.  I have handled very little sleep and very few naps pretty well but since Lucy has been only waking up 1-2 times at night (which is heavenly) my tiredness has hit  me like a tidal wave.  Every afternoon this week, I have turned the TV on for D and J so that I can nap on the couch.  I am feeling much better and eating much better:)  Chad says that sugar makes you tired but things like nutella were my no dose.  Jocey once asked me "Mom, can I have some of that stuff that keeps you awake?"  Yikes.  Things are much better in this department.

Strengths:

Lucy is still our little dancer and she loves songs with hand movements like Popcorn Popping on the Apricot Tree, 5 Little Ducks, Thumbkin, etc.  The other day we were dancing and I noticed her shoulders doing the shimmy.   I didn't think that she meant to do it until we were with her OT and she was dancing and she did it several times.  I have yet to capture that on video.  It is soooo fun to watch her do that.  She is in love with her older siblings and laughs and smiles when they are around her.  She almost hyperventilates when she sees her dad walk in the door every evening because she is so excited.  She yells at him until he looks at her and as soon as he looks away she yells again.  She has such a charming personality.

Okay, I think that is enough, I'll have to save the rest for my personal journal:)

Overheard

1.  I was pushing Lucy in the stroller and the rest of the family was riding bikes.  I hear Jocey's rickety training wheels behind me.  As she gets right behind me, I look back...

Jocey:  Get out of the way, slowpoke!

2.  Dallin pumping his pants with the air pump and laughing an evil laugh.  Jocey's response...

Jocey:  Are you smokin' or somethin'?

3.  We went to a highschool football game to watch the boy who Chad tutors.  Jocey wanted to sit infront of the cheerleaders so she could watch them.  After a while, Jocey builds up the courage to go and talk to them.

Jocey:  Can I cheer with you?

They give Jocey pompoms, teach her a few basics, and she does a cheer with them infront of the crowd (I captured it on my phone). 

4.  While getting ready for church, Dallin asks to wear his dark brown shoes that are too small.  I attempt to put them on  because he REALLY wants to wear them but only one foot will squeeze in.  I stop attempting and tell him he needs to wear his light shoes that fit.  He takes the laces out and puts both dark shoes on, which I can't believe because they are extremely tight.  Later, while talking to his teacher she tells me.  Dallin and Evan, D's friend, have fashion competitions in class every Sunday.  They say things like, "I look awesome today" and "Ties are better than bow-ties".  I had no idea but it totally explains the shoes.

 5.  Dallin:  I wish the toilet was in the family room so I wouldn't have to go somewhere else to go potty.

A Day of Celebrations

The starts aligned this weekend and we celebrated Jocey's and Lucy's birthday!  So many friends came to help us celebrate.  We really couldn't ask for more support than we have received while living here, our friends really are our family and we love them all (even the ones who weren't able to make it to the party;))

Jocey, filled with so much excitement she couldn't even contain it.  She was a little spoiled in her gift receiving.  She is still prancing around the house adorned with all her gifts.

The pinata was one of those ribbon pulls, which I have never seen.  It was kind of a let down so Chad helped out a little, and so did Tyler (dumped a jar of candy over the kids).

Onto our Halloween celebrations...  Lucy was a pumpkin, but only wore it for about 30 minutes.  Her body puts off a lot of heat for several reasons and and her costume only increased the heat.  She liked being dressed up and giggled when we showed her herself in the mirror.

Count Dallin didn't want me to apply his vampire make-up but it didn't matter anyway because Chad couldn't remember where he hid it when D and J got into it several days ago.  He did get his black hair.

Jocey felt like a million bucks with glitter sprayed over her entire body.  I went to spray her shoes with sparkles and they started turning black, so mad that I had switched her spray with Dallin's.  Oh well.  Oh and we didn't let her take that bag for candy, too big;)

Jocey played cupcake walk several times and with a mouth stuffed with a cupcake and chocolate all over her mouth and fingers she yelled, "Mom, look I keep winning them!  I can win some MORE!"  And she did, I think she had about 5.  I was to busy talking to friends to really care:)  Below:  She also had a several items painted on her body, every time I saw her she had a new painting.  Dallin was wrestling girls the whole night.

Right before Chad took the kids out to trick-or-treat.  First stop:  Willie Mays house for an autographed baseball, I guess he doesn't autograph anymore but they got a baseball.

I love Halloween.