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.

Gavin (Month 23)

You love your strider bike that you got for Christmas!
You look SO BIG here!

Dear BooDee,

Sigh... you are almost two.  I am trying not to think about it, but you make it really hard when you act "almost two."  And, by that, I mean all the adorable stuff you do... like be a total ham, crack your toddler jokes (they crack you up, too), talk up a storm (this is so much fun.  you are now making little sentences.  "Morning, Bubba." "Help me, Mama."), you dole out hugs and kisses by the dozens, you are so.very.sweet. 

You are ALSO an almost two year-old stinker... hitting, kicking during diaper changes, spitting, climbing EVERYTHING.  We are using a timeout chair.  You loathe it.  But when your time is up, you sign "sorry" and say "dorry" and then give me all kinds of love.  We discuss the issue and when I say, "Are you going to be good?" You say, "Ya. Ok, Mama."
Your personality is too much and I love you so much I could burst.  I cannot believe that next month you will be two.

Snuggling with your Bubba.
Be still my heart.



A little Christmas break lunch treat at the park.
(Yes... we let you eat that garbage every once in a while.
You probably will be digesting it until you're five. Ugh.)

You were in absolute awe of the amount of presents under the tree on Christmas morning.

Your first ride on your Strider bike from Nana and Papa.

Our first ride on the new Plasma cars.
Preston was already cruising around on the other one!



Christmas night... you were so exhausted!
It's hard to believe how tiny you once looked in this crib. Sigh.

Sound asleep... with a fever... and round one of two very ugly illnesses that rocked our entire family.
We all rang in 2014 with the nastiest, longest lasting stomach flu I can ever remember.

Poor sweet baby.  Kept falling asleep everywhere.
We were all so sick.  I would literally crawl to you and Gracie and attempt to make you drink from your sippy cup between naps.  It was awful.



Feeling much better and hanging at the park.



This was so funny!  I took several pictures of you fascinated with your shadow!
You kept making scary monster hands and sounds.

I love you, Smooch!

Silly boys... snagged my phone for a selfie!

Fractured Fashonista

Check out our little Diva's left foot.
Yep, that's a cast - - and cute toes, of course!

 On January 2nd, Gracie's ankle was fractured in two places following a massage and stretching with her nurse.  While her nurse clearly should have used less pressure and force, it wasn't entirely her fault.  Gracie has low bone density in her lower extremities due to lack of weight bearing and nutritional issues for the better part of nine years. 

You can see the lack of bone density here... her bones should be very bright and glowing instead of faded and almost transparent in places.  The ER doc and radiologist told me to be prepared for more of these as she ages.  Ugh. 

The good news is that is wasn't vascular - - her pediatrician had me rush her to the ER on the 2nd thinking she had a blood clot (DVT) rather than a break.  I had called in requesting an x-ray order because she suddenly wouldn't weight bear as we were leaving for a park outing.  He wanted us to be seen.  So along with Gracie's nurse, I rushed all three kids into the pediatrician to then have him tell me under no uncertain terms to rush her down to Children's in Oakland... 40+ miles away.  "Don't even stop at home first," he said.  (I did... I needed stuff for my kids and I needed to get Gracie's nurse back to her car.)

We rushed down to Oakland, John abruptly left work and met us alongside the freeway where we quickly exchanged the boys.  Gracie's nurse had been kind enough to offer to watch the boys in the lobby of the hospital until John got there, but he literally flew through multiple freeways to meet me. 
When I got Gracie to the ER, they were expecting us (those who had been waiting for hours were not so friendly and we had lots to say about us getting right in... including screaming racial slurs at us and the nursing staff who pulled us to the back immediately.  Sometimes I am so grateful Gracie is deaf and oblivious to that part of life.)  Anyway, once they examined her, they all seemed very underwhelmed and said they figured it was a fracture.  I said I figured so, too, but that the pediatrician literally freaked when he saw her leg swelling straight up past her knee and felt how hot it was.  Thankfully, he was wrong.

The bad news is this fracture is likely the first of many to come due to the fragility of her bones.  They put on a soft cast in the ER and by the time we drove all the way back home (at 10 something at night), Gracie had torn it off.  She got her hard cast on Monday and literally cried for four straight hours before conceding and giving into the fact that it won't come off.  We all know how this girl likes to be sock/shoe/clothes-less the minute she gets home... she was fit to be tied.  Now, though, she accepts it and is standing in it, doing her "Gracie Yoga" and pretty much back to normal.  And, in true Gracie fashion, she handled the pain like a champ.  Unless it was touched by someone other than her, she didn't really complain of pain hardly at all.  She even cruised furniture a bit before she was casted.  OUCH! 

Gavin (Month 22)

LOVE this little face!

My little Gav-man,

You continue to explode in your communication.  AND you continue to edge toward two... with a more shrill "no" when you are trying to get your way, a masterful "fake cry" when you are trying to get your way with Preston and you think Daddy or I will step in and defend you (we are onto you... you are smart... but so are we!) and versions of "no" such as "don't like" and "uh-unh."  At the same time, you are as sweet as can be - - so loving, so helpful and eager to please. 

You say, "ohhhh kay" when I remind you not to say "no" (or not to scream "no") and "ear you go" (here you go) when you hand us something.

You are great about making sure everyone picks up after themselves... especially Brooke, Gracie's nurse.  You constantly are picking up things that she sets down and handing them to her, "ear you go."  So funny and so cute.   At the same time, you will dump every bin in the playroom in a flash in order to line up the bins and pretend they are a balance beam.  Or you'll stack them and use them as a step stool. 

I love watching you play (which you do so well) - - sitting back and watching you problem solve and play is one of my favorite things to do.  I will say, "You're busy working hard, aren't you, Boo?" and you'll nod and say, excitedly, "Ya!"

Even Batman needs a nap! 
This is pretty much becoming the only way we can get you to nap during the day... by going for a drive!

You LOVE your sissy and smooch her all the time.

Getting SO big!!!

Cracking yourself... and me... up!

I love these moments I get with you when your brother and sister are at school and Daddy is at work.



The "bin balance beam."

Silly boy!



You LOVE when Bubba blows bubble gum bubbles. 
Sorry, BooDee, it will be a while before you can have gum!

Your first Starbucks hot chocolate.
The first of many, I am sure!

Shopping is hard, hard work. 
(Actually, as per usual, you crashed in the car and daddy had to do this to grab a few things.)