Integrity Counts

Beyond proud of our big boy today.  He received the game ball for being honest about a play at first base where he didn't quite make the potential inning-ending out and the coaches were debating the call (which was in our team's favor).  Preston was asked if he got the out.  He said, "No." And he was right.  It was super close, though!  Ultimately, this changed the direction and tone of the game and we lost.  But, most important, the life lesson was not lost at all. 

Monterey Getaway

By far my favorite thing we did on our trip.
All three kids loved it... all three.  And, I will readily admit that I cried under my sunglasses multiple times during our ride.  It is one of those kind of things that we've always wanted to do,
but never have been able to do with Gracie.
Serious bucket-list type moment... it was beyond fun and so very special. 

We kicked off our two week spring break with a quick family getaway to Monterey.  We spent two nights and three days... just the perfect amount of time to really enjoy ourselves and not overwhelm Gracie, who often has a difficult time transitioning when we travel.  She did great the first day and night, had a really hard time day two (but did have a good couple of hours while we were at the aquarium) and then rallied for our third day!  Overall, a HUGE success in our family for getting away like that in the first place!  The boys had a blast, too, and, I have a feeling, will be asking when we are going back for a long time!

Three happy kids on our drive down.

Little Miss Thing all excited and happy in the hotel room...
that was a good start considering how stressful a hotel room can be for her.

We stayed at the Portola Inn and they have a kids' pirate program. 
Preston took their treasure hunt very seriously.

Walked all down the Pier and the kids fell in love with the parrots!

 We took a long walk along the water. 
Gracie was not thrilled with the constant stopping to look and take pictures.
She wanted to keep moving!

We had a great dinner at the brewery at the hotel. 
Since we were able to eat outside, Gracie didn't stress out at all!
John had to get a picture of the fire pit and his beer sampler!

The hotel's breakfast buffet... way more than we could possibly eat!
Gracie was not thrilled to be at breakfast... thankfully she perked up at the aquarium. 

Monterey Bay Aquarium
Gracie was a huge fan of the Aquarium in Long Beach and this one was no exception.
We did, however, have to forego our plans to eat a late lunch in Cannery Row as she wanted no part of anything that afternoon.

Love this shot of our littlest man soaking up his first moments at an aquarium.

While Gavin and Gracie were zonked out (one napping because he needed it, the other crashed due to being stressed out), I took Preston to the pool to play.  He had the whole place to himself.  It was freezing... our boy is crazy!
For dinner that night, we took a chance that Gracie would snap out of it and had dinner at an AMAZING Italian place not too far from our hotel.  Turns out it was on Diners, Drive-Ins and Dives, too! 
The Lasagna and pies are so good. To.Die.For!!

Swanns on a surrey ride! 
By far, the best part of our trip - - a surrey ride along the coast on a stunningly beautiful day.
We all loved it... and the fact that Gracie loved it as much as she did made all the rest of us love it even more!
PERFECTION!!!
We even had the suction bungee-corded across the backside of the basket since it was too big to fit inside. 
It all worked out!

One of my most favorite days!
(This was the first collage I made on a collage ap on my phone and posted to Instagram.  Not loving that barcode in there!)

Celebrating a Stable Spine

In a stunning and miraculous turn of events, Gracie's scoliosis has remained stable (her kyphosis deteriorated slightly) over the last four months.  This was so unexpected - - so unexpected, in fact, that I literally almost feel hung over from the (wonderful) letdown of anxiety and emotions. 
These findings, coupled with her linear growth and weight gain has resulted in her surgeon saying, "She bought herself some time."  Today started with us thinking we were setting a date for a complete spine fusion and ends with at least six more months surgery free.  We will take it!

This is not something we take lightly... we know that this surgery will happen, it's just a matter of when.  We chose, despite popular medical opinion (well, her current team's opinion... our SoCal team had varied opinions), to postpone last year when her surgeon recommended we move forward at that time.  Gracie needed time to just "be" and not deal with another complex invasion of her body.  We were afraid, that at her weight, it wouldn't be as safe and healthy to go through that kind of trauma.   The urgency, in our opinion, was to do everything within our power to increase her caloric intake, manage her nutrition better and get some weight on her... something that had been impossible her entire life.  I made it my mission (not that I hadn't before), but there was even more at stake... buying time for her growth before stopping all growth through her spine.  It was the right decision for her on every level. 

Powering Through

Missing school due to nursing issues didn't stop Miss Gracie from giving her all at her first day back at therapy since December!  True to her character, this girl powered through even though it was super tough.  She is a rockstar!

It was, by no means, easy.  Nor was it pretty.  She compensated for the pain and stiffness by dragging her feet along behind her.  But she did it.  She powered through and didn't quit.  And, when it was over, she was super happy to be done and I, as always, was proud and awestruck.

Star of the Week

Preston was Star of the Week last week and he was so excited.  He waited for two-thirds of the year for it to be his turn... and waiting that long was nothing short of torture for him!  He got to bring home their class mascot, the Outstanding Owl, take pictures, write in the journal about the owl's adventures, make a poster about himself and all of his likes, and, best of all, be a helper and leader in the classroom.  For someone who loves to soak up attention and have a reason to talk in class more without getting in trouble, this was right up my boy's alley!

Nursing Fail

So we've not had the best luck with nursing since we moved in July, 2012.  We continue to struggle to find the right fit for Gracie, for school and for our family.  That's a whole lot of "fitting" to deal with.  And, given that agencies don't pay homecare nurses well to begin with, the search becomes that more difficult as the pool of dedicated, qualified individuals gets smaller and smaller.  Add in the fact that we live a little isolated compared to the rest of the East Bay Area and it just narrows our options further.

We are on the hunt... again.  We hired a new nurse out of the slim pickings sent our way.  She shadowed Gracie and her current nurse at school for a total of 14 hours last week, moved out of the immediate area over the weekend and, today, officially quit by not showing up for her final day of shadowing before starting full time on Monday.  This means that Gracie's last day of school for an undetermined amount of time is tomorrow.  I am SO angry and frustrated... and loathe that this issue is out of my control.  Other than having every agency in our area (that we can use) on the hunt for a nurse, I can't do much else to solve this problem.  My sweet girl loves school.  This STINKS.

Ultimately, what needs to happen is the County or District need to hire Gracie a nurse directly and cut out the middle man of the agency.  This would increase the quality of the applicant tremendously as well as give the school district or county (or both) some sort of control over the situation.  They've never hired a nurse directly for a student; they've only funded the nursing through the agency.  The problem with that is the agency receives a huge fee per hour for the nurse while at school with Gracie but they do not pass that (or even a generous portion) down to the nurse.  Instead, they use the extra dollars to offset what they are losing on their MediCal patients.  This system is so broken and backwards... and that, clearly, is another post (or series of posts).

Happy 2nd Birthday, Gavin!

Happy 2nd birthday, Gavin!!!

My dear, sweet, Gavin ~

Today you are two.  I cannot believe it.  (I know... when you get older you will read these and say, "Geez, mama, you say that you can't believe it every time one of us has a birthday!")  But, really, the time passes so quickly and because I keep track here, it blows my mind how fast you change and grow.

You are a communicator.  You have a huge grasp on language for a little guy who is only two.  You have a wonderful sense of humor... cracking your own jokes regularly.  You are super sweet... eager to please, pitch in, kiss an owie anyone has and you eagerly dole out hugs and kisses and "I love yous."  You love your stuffed friends and take great care of them.  You love your brother and sister to pieces and they love you right back. Your imagination blows my mind... you can sit independently for extended periods of time and play - - action figures, blocks, cars - - you get involved in your own little world.  I can't wait until you talk even more and find out what exactly is going on in all of that play! 

You are so easy to love and so easy to like.  Such a fun-loving little guy.  One of my favorite moments of your day today was when you cracked the funniest joke in, what I am sure is, the history of all two-year-olds.  Daddy was setting up the Rifton desk for you to sit in and blow out the candles on your cake.  It was Gracie's for years, then Preston's and now you use it.  Depending on where it is being used, it doubles as a time-out chair, too!  Anyway, since we don't have a table at the moment and the counter is so high, we decided to have you sit in the desk and we could all sit around you on the floor.  You were so excited as you sat there!  Then, all of the sudden, you said, "Wahhhh!" and signed, "cry" and said, "Oh, no!  Time out!"  You were cracking up at yourself.  And Nana, Daddy, Papa, Bubba and I laughed right along with you!  It was absolutely hilarious!

I can't wait to see what this next year holds for you.  I know you will change so much... so take it slow and don't rush, okay BooDee?!  We all love you so much, little Smooch!  Happy 2nd birthday!

All my heart,
Mommy

You had so much fun celebrating, opening your presents and playing today!

This is your "fight" face!  You put up your fists and pretend to be angry!
So funny!

My favorite moment of the whole day!
This is when you were pretending you were upset being put in a timeout.
You were hilarious!
 

Cake is YUMMY!

Even Superman birthday boys get tired!  You fell asleep in your highchair during dinner!

In late January, you took your first trip to the ranch with daddy and Preston.
You loved it.
(Well until daddy was super busy rescuing a mama cow and helping her calf get food and water. 
You didn't like that part very much. 

On the quad... bein' all big and stuff!

In the famous tree! 

Such a good brother... giving your sissy loves.

I got all kind of lovin' from you after I had been gone with Gracie overnight at the hospital.

You can often be found with your safety goggles on doing all kinds of work around the house!

My sweet little Valentine just two days ago!
This is often what you're doing... digging in the yard, smelling every flower in sight - picking them, too, and wearing a helmet so that you can hop on your bike at a moment's notice!



I love this happy face!

Good Day for Gracie

Gracie went back to school today for the first time in two weeks AND she got her cast sawed off!  It was sort of funny... the tech who took care of her warned me that the saw could be really scary for her because of how loud it is.  It scared me, but Gracie was fine.  She was definitely in shock for a moment or two watching it come off, but she didn't seem to be afraid that her foot was going off with the cast the way I was!

Considering she missed several days of school due to the fracture and then another two weeks because of the flu, she was one happy little camper to be back at school today!



Look at her sweet face!  She is so happy it is off!
Plus, she knows that she gets a real bath without a huge plastic bag on her leg!!

 

Let's be honest,  though... that cast didn't really keep her down!

 

 

SICK of 2014 already

This is Gracie on December 28th, buried under blankets and hooked up to her Vest machine. 
She was miserable... for three days.

Gavin on December 29th. 
We literally fell like dominoes.

We rang in the new year with the violent, three day stomach flu... ALL FIVE OF US.  Happy Puke Year.  It was awful.  The I-don't-know-how-anyone-got-taken-care-of kind of awful.  It started with Gracie, but, with her, we never know if it's "just Gracie" or if there is something going on.  She couldn't eat without retching, she had a low-grade fever, she wanted to be under blankets... she was miserable.  Gavin and Preston had colds and, with that, Gavin always gets the croup.  So, I didn't really think Gracie had the stomach flu.  But, then Gavin projectiled all across the kitchen two days later (and then everywhere else), I knew for sure.  Then I got it on the 30th and John and Preston later that same night.  On New Year's Eve, I vaguely remember crawling to the fridge for fluids, handing stuff to Gavin in a sippy cup and literally falling asleep next to him halfway on our tile and family room rug.  It was brutal.  BRUTAL.

Then Gracie's fractured ankle.

Now... everyone except Gavin has the flu.  Influenza Type A.  Also BRUTAL.  Preston was the first to fall victim (along with several kids from his class).  His fever hung around 101.4, even with meds, and climbed fast with the slightest window in between.  Despite wiping every surface in the house multiple times, a nasty form of "ick" invaded our home again... perhaps because this boy cannot keep his hands out of his mouth trying to wiggle teeth!?  Ha!

My poor little man.

Then I got it, then John, and despite my most valiant efforts, Gracie.  And that, I am sad to say, landed her in the hospital - - mostly for observation and the need for oxygen at night.  That was our first experience inpatient at Children's Oakland and, though the staff was nice and our wonderful pulmonologist even stopped by (after a meeting, he wasn't even on call), the "accommodations" are less than desirable.  Eeek.  She has a long road of healing before she can get back to school, but at least they let me take her home where she is comfiest.

Gracie's aide, Kaitlyn, dropped this by before we got home from the hospital. 
She is still so sick, but at least she is home in our little make-shift hospital.

Gracie's awesome team made this for her from her entire class!

100 Days

Today is the 100th day of school... and this boy pretty much blows my mind.  He is getting so big, so fast.  Who said that was allowed?!

I don't think he really had to duck down much last year.



I made him turn around so I could see his face...



He peeked through one last time and told me he loved me. 
I hope he will always do that.