An Update

I don't even think my family checks this blog anymore and I feel a little bit of guilt for not being consistent in my updating but life really gets in the way of doing some things, you know?

I don't really have anything exciting to record, we are most happy when life is mundane and our schedules are consistent and that is how life has been!  It's really great.  One of our nurses, however, was sick for about 2 weeks and Chad and I were wiped out from taking care of Lucy during her night shifts.  Master Lucy sleeps great but she hollers in her sleep to roll her over, or vent her belly, or rub her eye, etc.  She may be conditioned to fall back asleep quickly (even during a breathing treatment) but we are not.  We are so grateful for our night nurses, no one in our family would be alive right now if we didn't have them.

Chad doesn't get nearly enough air time on any of my social media outlets but he finished his masters program in business (MBA) in December.  We are all SO proud of him.  It was hell but we knew he just needed to push through it and complete his schooling.  Now he is around every evening (except for Wednesday's- he is the new scout master) and weekends to be my slave spend time with us and it is so lovely!  Like I said, he is now the scout master and he is pretty excited about spending more time outdoors and having Dallin as his camping buddy.   Also, the company that Chad works for received funding so that was very exciting for him.

Because of this welcomed relief, we have been able to work out a schedule with one of our nurses where she comes on Friday evening so that Chad and I can go on dates.  We think that this is the best thing ever and we have discovered that we both still really, really like each other.  We have so much fun and we look forward to Friday nights all week long.  It has been so good for us to get away by ourselves- without this we don't really get alone time…ever!

I have been busy with work (but not as busy as I am taking care of my little ones).  One of my jobs includes being a member of the Family Advisory Council at Lucille Packard Children's Hospital (at Stanford).  This makes me sound much cooler and smarter than I am so don't be fooled:)  The FAC does many incredible things but right now they are developing a self-management center at LPCH hospital.  For the last year, I have played a very small part in developing curriculum and lessons for this center.  Now we are being trained on how to present these lessons and mentoring parents in the hospital and in clinics.  It has been an incredible learning experience and I am surrounded by so many amazing people who have been teaching/mentoring me and I feel pretty darn lucky.  I am just hopeful that I can be of some help to others in my work there.

Dallin is the same, sweet boy that he has always been.  He suffered a concussion a little over a week ago.  I wasn't sure what to think when he went crazy after he hit his head.  We watched him closely but a few days later he started to throw up.  We had him checked and he is fine but  now Jocey is throwing up so we are pretty sure, and terrified, that he had a stomach bug and we are doing our best to keep germs contained in our tiny apartment.

Jocey is happy and doing well.  She has been having a lot of crushes on Dallin's friends which causes some contention in our house.  "Jocey you can't follow my friends around at recess, it's embarrassing!" - Dallin  She is not very subtle about boys, at all!  I took a picture of a love song she was writing to her crush on our chalk board but when she saw me holding my phone up she started screaming and erasing the words.  She then found my phone and erased the blurry picture I did take.  She really wants to wear a training bra because some girls in her class do but I am pushing back on that…why do kids want to grow up so fast!!  Don't they know that life just gets hard when you grow up?

Lucy is doing well and thriving!  Her little body is holding up and it is pretty incredible to watch her push through each day.  She is reading (beginner level) like a champ and we are really working on her site words.  Adding homework to the list of things I have to do with/for Lucy each day may push me over the edge but watching Lucy succeed and be proud of her accomplishments is worth all of the stress in the world.  She goes to school half-day everyday but she has recently started doing one full day each week- a pretty incredible accomplishment for her to sit up in her power chair for that long.  She thinks it's pretty awesome to come home when the big kids come home.  The vendor has dropped the ball several times but we are looking forward to Lucy having her own eye gaze at school so she can access the curriculum.  She is a little sponge and she wants to be just like her big sister and so now she has a crush, of course!

So, there you have it!  A general update of us.

Part 3

I sometimes move throughout life, forgetting how good we have it.  We have been so fortunate that Lucy is with us and that she is experiencing a wonderful life and she is living it the way that she wants.  In the midst of all of the stress, anxiety, and busy-ness, I am just happy that I get to spend my days caring for her (and Dallin and Jocey, of course)  When I remember previous hospital stays/sicknesses, I think that I could never, ever do that again.  I get anxiety just thinking about Lucy getting sick again (incase you are wondering, I have a lot of anxiety always brewing up inside of me, that topic is just the very tippy top of my stress iceberg).  But when Lucy gets sick or we do end up in the hospital, our family is overwhelmed (in a very good way) by a tidal wave of love and then I remember how we have done it in the past.  I think I am crazy that I ever feel lonely when so many are always right beside us, figuratively and literally.

It never ceases to amaze me how kind and good people are.  Our hospital stay was short and it wasn't as serious as times in the past but each day, family, friends and hospital staff (ones that I work with now and ones that have cared for Lucy in the past) came to visit and made our days very cheerful.  Lucy's kindergarten teacher, Mrs. A, came to visit and really made Lucy's day.  I could write an entire post about Lucy's teacher but just know, she is a very special person.  Our first pediatrician, spent an entire morning chatting with Lucy and me and then she watched Lucy so I could run home and shower.  

Lucy's kindergarten class sent a video to cheer her up and they sent notes and cards and more notes and cards.  I have kept every single one of them.  They colored entire pages with pictures and sweet words of get well and love.  I just can't even force myself to give them to the trash.  I will have to ask permission to post this but one of the little boys in L's class was videotaped when his mom told him Lucy was home from the hospital.  When I watched it, I teared up, his last phrase went something like, "THIS IS THE BEST DAY EVER!!!"  It makes my heart so, so happy to know Lucy has sweet friends who treat her like one of 'them' and she is loved by so many.

We are still receiving dinner from Lucy's classmates, even though I told them just one week was enough.  We are forever grateful for every single kind act and we will never be able to communicate how much it means to us.  

Ever since Christmas break, Lucy had been asking when she was going back to school.  The night we were discharged, Lucy's pulmonologist called me and recommended that we keep Lucy home from school for the next 4-8 weeks because of the recent flu epidemic. I trust her very much and she isn't the type of person to just throw some random fact at you to scare you.  We agonized for days and talked to many of Lucy's doctors and I will skip all of the reasons why and why not but Lucy got to go back to school and she was so, very excited.  She tried so hard the night before to go to sleep early so I could wake her up early to get ready for school.

Going back to school in her new purple, kitty earmuffs (that she asked for Christmas)
Actually, we were walking into school one coldish day and she said, "Mom, I knew you should've brought my earmuffs."

Lucy was thrilled to see all of her friends, teacher and school nurse and I was surprised to see this large poster, with the sweetest pictures and notes from her classmates, on the outside of the school.  Some very sweet and kind people surround Lucy and we are so very grateful.

Lucy's Class welcoming her back.

Part 2

Jocey and Dallin were at a friend's house and my sweet friend said she would just keep them until Chad got home from work.  So I took Lucy in and she was excited to see old and new friends at the hospital who were all so surprised at how huge she is now.  Lucy enjoyed it all until she got her IV and then she cried and said she wanted to go home right now!

I will spare you all of the details but it was a very frustrating stay.  I decided to stay with Lucy the first two nights because she hasn't been in the hospital for so long, the new nurses wouldn't be able to understand her and when she isn't understood, she starts to cry and when she cries and cries, her lungs can (and have) collapsed.  I knew it was going to be a short stay and I would much rather not get any sleep for a couple of nights than risk Lucy's comfort and health.  Also, something I want to record…  Lucy is so, so, so bossy when she isn't feeling well.  Of course, I want to do everything that she needs to feel comfortable and help her get through all of it.  Well, one night, I was exhausted and a little annoyed at the constant, every second bossiness (I want water, my foot itches, I want water, my foot massager stopped, I want water,  I want to play with something, I want water, I need suction, and it is like this every second she is awake).  Remember the gerbil water dripper we bought for her a couple of years ago?  That would've been very handy.  I kindly, but firmly told Lucy that I was going to bed…

Me:  Lucy, I am so tired, I am going to go to bed on that blue chair right there.
Lucy:  But who's going to take care of me?
Me:  Well, I am but I'm going to sleep and you need to go to sleep too.
I laid on the tiny blue chair that doesn't even recline all of the way to go to sleep and I hear…
Lucy:  (in the most pitiful voice)  I had a horrible day.  I am not a happy girl.

Of course, I pop right up and continue to do every task she demands of me.  This girl has me wrapped around her pudgy little finger and I would do anything to make her comfortable and happy. But!  She totally beat me at my own game!

The hospital increased Lucy's treatments to every 3 hours and they gave her IV fluids (Lucy was not tolerating her feeds).  She was also started on antibiotics via her IV.  They didn't do much, other than these three things.  We were on the bottom of the totem pole (which, we are very grateful to be) but the nurses were so busy with their other patients that I took care of Lucy by myself but without access to anything.  At home, when Lucy needs something, I can just get it for her.  At the hospital, I have to wait and wait and wait- not their fault, it's just how the hospital is.  I felt like I was communicating what I wanted done for Lucy but my message would get lost once it left the room (and when I brought up Lucy's belly to one of the residents in charge of her care, they said, "What?  Her tummy hurts?"  I asked her if she had looked at Lucy's x-ray and she said she had not.  What?  You are making decisions on my daughters care and you haven't looked at her x-ray?  Her x-ray showed her intestines full of air and it is very, very obvious)  Even after I had told the team that I was really worried about Lucy's tummy (and not so much her lungs) they talked about ideas they had but that is all.  I just wanted an ultrasound or something so that we could at least eliminate some of the potential causes.  I did take matters into my own hands and gave her two suppositories (not at the same time) to clear her bowls so the gas could come out.  Finally, they let us go home.

Lucy was pretty excited to go home and even more excited for her nurse to take her IV out.  When we got home, she asked if she could go potty.  When I set her on her chair, she tooted really loud several times and she said, "EXCUSE ME!!"  It was so funny.  I think she was so stressed out at the hospital she couldn't relax- although the suppositories I gave her helped move things a bit.  She had a good night and I took her into her pediatrics office for an ultra sound the next day.  The results came back normal so we felt much, much better about things.  We are still confused because her white blood cell count was so high.  Over the next couple of days, Lucy's tummy seemed to heal quickly.  Now, Lucy is back to her self and we are amazed and grateful!  We just can't believe how well she is doing.

We broke our streak...

Well, to try to make a long story short, Lucy was showing symptoms of being sick on Christmas Eve, it didn't stop her from reciting a poem for the Christmas Even Talent show, in her very raspy voice.  Christmas morning, she wasn't doing well so we pulled out all of our tricks that we pull out whenever she starts any symptoms.  She was really choky all Christmas morning but she was still excited to open gifts, watch her siblings open their gifts, and spend time with my family, who had all traveled to spend the break with us.

Lucy went potty and her pee was almost black (TMI?), it was just so dark.  I called her Pediatrician, who was on vacation in Pennsylvania, and she ordered a urine test/culture and some antibiotics per my request.  We continued to increase Lucy's treatments and oxygen through the rest of the day and night.  The next day, I could tell that she was reacting positively to the antibiotics.  I am leaving out a lot of little details but this story will never end if I don't.

Lucy stable but she just wasn't getting better and her tummy….her tummy hurt so bad!  She had some diarrhea which is sometimes expected with antibiotics.  Lucy's muscles are not very strong but if I just put my hand close to her belly, she would smack me with her hand, really hard!  When I would transfer her she would just cry and cry.

Lucy was in such pain that she would cry and one night she was crying and saying that she didn't want to die.  My heart broke into a million pieces and I was trying to process how she was processing her life and/or this sickness.  After a couple of days of the same and keeping in touch with her pediatrician, I called Lucy's GI doctor.  We discussed what had been going on and she said it sounds like Lucy is really, really backed up.  It all made sense, she hadn't pooped for several days but she did have diarrhea but it wasn't very much.

So then, we pulled out all of our constipation tricks.  The poor girl was miserable for days.  Lucky D and J got to help me hold the potty bowl and Lucy's legs off of the side of her bed while I gave her suppositories, enimas, etc.  There was some very funny reactions but I will leave that for another day.

Lucy was just getting brown water to come out.  She was still in pain so this Sunday morning we took her to Urgent Care for an x-ray.  The x-ray showed her intestines full of... air!!  What?!? There was one stool at the bottom of her large intestine but not close enough to her rectum to do anything.  The doctor who saw Lucy has never seen her before and she didn't give us any answers so I called GI and Pulmonary at Stanford the next morning.

Dr. Yuan, Lucy's pulmonologist, called me back right away and said she didn't see the x-ray but she read the notes (PAMF and Packard only share certain types of information).  She wasn't worried about Lucy's tummy, she was worried about her lungs.  Lucy's left lung is sorta always collapsed (It has always bugged me and I am always trying to figure out ways to fix it).  She has some spots in that lung that will probably never inflate and Yuan said that the notes were saying that those areas were worse than the last x-rays that Lucy had.  She wanted us to see our PCP, get some blood work, more x-rays at Stanford so she could see them (and I hand delivered the x-ray from PAMF to her office).  So Lucy and I headed out for our day of appts.  We finished up and got home where Yuan called me and said, I want you to take Lucy to the PICU, I am very worried about her lungs, they have gotten worse and there was some atelectasis.  Lucy's white blood cell count was 49,000, which is crazy.  The funny thing is Lucy didn't have a fever and she didn't seem like she was really fighting anything, just very uncomfortable.  I asked what they would do differently at the hospital and she said something like, Cherisse, you've been treating Lucy for two weeks, let us help, I really want to observe her and make sure that lung can get better.  I still drug my feet and said that we can do that at home, just please don't make us go.  She was adamant and so I asked her, what would you like us to do and she said to go in…so we did.  I figured, I have done everything for Lucy's tummy that I can think of, for sure, they would help us figure out that issue.

Overheard

Lucy watches shows while she does her vest/breathing treatment (aka shaker vest or shake-shake).  Today, I heard the ending song and Lucy blurts out…

Lu: Ending alert, ending alert, ending alert, ending alert! (until I turned on another episode)


Me:  Wow!  Dallin you've been eating a lot lately.
Jocey:  I know, I think he is hitting puberty!
Dallin:  No, I am not!
Jocey:  Looks at me and whispers, "I think I am, my breasts are sensitive"

I almost died laughing.

After my patience is gone, I don't always say the nicest things…

Dallin and Jocey were fighting and I told them I was going to separate them, like send them both to separate places.  Our conversation ended and I started brushing Lucy's hair.

Lu:  You're not going to send them away, are you?
Me:  No way, I would never send them away.
Lu:  Tell them.
Me:…
Lu:  Tell them.  Tell them right now!
I told them I wasn't going to ever send them away.  That's right, my 5 year old puts me in my place at least once everyday.

Lucy loves to taste our food.  She actually likes and wants to do whatever we are doing.  When we sit down for dinner, she must haven a cup, plate, utensils and food on her plate, just like us!  Obviously, she doesn't eat via mouth but we dip our fingers in sauces and dips and let her have little tastes.
Today I was eating my lunch and I gave her a 'taste' of sauce.

Lu:  It's like a party in my mouth!  Is there a party in your bowl!

When Lucy and I get to school, she likes to stroll along the sidewalk next to the carpool lane so we pass a lot of people.  Most people say, "Hi! Lucy!"  Sometimes she says hi and sometimes she just drives by (she is always worried that she is going to be late for class).

Me:  Lucy, when someone says Hi, make sure to say Hi back or wave your hand.
Lucy:  Like a queen?  Okay (as she shrugs her shoulders with delight)

Whenever Lucy asks for something and I don't get it right away or I say no, she will do one of two things:

1.  Please, Momma, please, please, please!!!  I will do everything for you! (I think she means anything but it's so cute!)
2.  Awww, sad face! and then she tries so hard to put her bottom lip out.

I wish that I could record every little thing that Lucy says, her words are our treasures and she is the sweetest.  Just a few things off of the top of my head…

This is the best day ever!! (and it was just a regular day!)
It's so beautiful today!
When we go outside our door, there is a small palm tree next to two large ones.  She has to say something about that little tree everyday, she just thinks it is so cute!

Halloween 2013

Lucy, her BFF and her little sister

My niece, Kaelyn, was the cutest little clown

Lucy's pumpkin she decorated at school

 

I tried so hard to make Lucy's dream of an Ariel jack-o-lantern come true but when I made my last cut, the piece that made her eye fell off.  Wahh!

D and J had to do a assignment for school and make graphs with the candy they got! Ha!

Just some pictures of our Halloween this year.  The kids all went trick-or-treating with friends this year. Even Lucy!  She got to go with her BFF, Lily.  I was with Lucy, by myself, for a little while.  It was different than other years where Jocey would go to each door that Lucy couldn't get to (this world is not an accessible world) and ask for an extra piece of candy for her sister.  I wasn't going to run up to each door and trick-or-treat for Lucy, I was going to make her earn each piece of candy.  I successfully assisted Lucy in running over my toes about 20 times but she was so sweet to each person.  She would holler trick-or-treat and then after they gave her a piece of candy, she would say, "I'm Lucy, what is your name" and then she will say something like, "I like your decorations" and she just wanted to chit chat with each of them.  It was so fun to run into schoolmates and classmates all over the streets.  Lucy (and I think every kid) is a big huge fan of Halloween.

Flash

So, Lucy hates the flash but she is such a sweetie and she tries to stretch her eyes open so her eyes aren't closed for the picture (I am not abusing her, sometimes I just forget to turn the flash off).  Now, she automatically opens her eyes wide and it makes for some really funny pictures.  Jaime Gooden took our favorite one and we can't help but laugh when we look at it (it's on their blog).

Another Special Birthday

Well, I can't believe another birthday for these two has come and gone- I have to pinch myself to make sure I am not dreaming.  I just love that they share this special day and I hope and pray for many more birthday's celebrated together.  This post would've gone much better if I didn't waste so much time trying to make these pictures below line up evenly, like an orchard…I am not very patient with blogger's editing features (or lack of).  I am sure when I publish it the pictures will all do whatever they want...

 

 

    

*the sky was too bright for Jocey to keep her eyes open, Lucy is always looking up so it was no biggie.  They couldn't stop laughing about it though.

These two are the best kind of sisters.  They love each other, sometimes they fight, but mostly, they love each other.   We are so grateful for both of them and I think they are so very lucky that they have each other.

A very Happy Birthday to my two lovely girls.

Birthday sisters meeting for the first time.