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.