Giants... We believe!!!

Enjoying another game with my big, toothless boy!

Another date at the yard with my favorite 7 year-old.  Huddy on the mound, watching him warm up with Posey and cheering the Giants on to win the first game in their next big streak!!! We are all about positive thinking!  We believe in our team!

(Update: They WON!!! I blogged this from the park!  They did it!  We knew they could!)

Gracie's Getting A Wish!!!

A volunteer team will be coming out to meet Gracie and interview our family in a few weeks...
they will then put together her wish plan!

It is official... Gracie is getting a wish from Make-A-Wish!  It is amazing... we are so grateful.  I actually cried when we got the call yesterday.  It is such a mix of emotions... you never want your child to be eligible for something like this. But, at the same time, you want them to be able to have something so wonderful given all they've endured.  She was actually nominated for a wish several years ago, but she was so unstable medically and the time just wasn't right.  Now she is in a better place to be able to enjoy her wish. I also had so many reservations about accepting a wish when there are so many other families out there who have a child who also deserves a wish and we have the means to do many things with Gracie.  Thankfully, the Make-A-Wish organization helped me realize that this isn't about what we can provide for her.  It is about something wonderful being done for her - - that there shouldn't be a stigma or guilt for accepting it - - and that because she gets a wish doesn't mean that someone else won't.  Every child who meets the wish criteria gets a wish.   What a wonderful organization!!!



I completed this on Gracie's behalf for her wish volunteers. 
I hope this, along with the slideshow I prepared, gives them an accurate picture of all things our sweet girl loves!

Last Day of School

Once again we find ourselves at the end of another school year.  And, once again, my mind is blown by how much my big boy has grown and changed.... especially all those toothless gaps in his smile!

A Date at the Yard

After four days of caring for our little pacemaker patient, I got to go on a date with my big boy!  It's no secret how much this mama loves her Giants. So, it is no surprise how much I enjoyed my date today with my favorite 7 year old, at our favorite ball park, watching our favorite team.
 


On our way!
He sat in Gracie's car seat so he could be closer to me and so we could talk.
(Don't look at how big he is for her seat... I forgot to adjust it when we left.  Don't tell my husband!)

Me and my boy... in great seats thanks to an old high school friend.

Mr. Snaggletooth!
He could not leave that tooth alone the whole game!

On the way home... exhausted!
And, I'd be lying if I didn't admit that I was a little jealous he got to nap and I didn't!

Pacemaker Change

Yesterday I drove our happy-go-lucky, feeling-well Gracie girl into Oakland to have her pacemaker changed.  No matter how many surgeries (this was #41) or how many times under general anesthesia (this was #29... not counting "procedural sedations"), we never, ever hand our daughter over without a pit in our stomachs.  It just doesn't get easier.  It also doesn't get easier trying to help her understand that she is going to sleep feeling well and will wake up in pain... or managed pain.  That stinks beyond explanation.  It always feels like such a betrayal to her.  All I can do to remedy that is be by her side and do everything within my power to care for her, advocate for her and love on her. 

I drove her in and John met us there.  Before he arrived, the cardiac team - - Gracie's cardiologist, the CVICU nurse, the surgeon, the Medtronic rep and the anesthesiologist - - all gathered at her bedside and informed me that today she would likely be having open heart surgery to replace her ventricular lead.  (The surgery, as scheduled, was to replace her pacemaker generator only.  Since it is implanted in her left abdomen, it is a fairly "easy" surgery that doesn't actually involve the heart - - other than monitoring, of course.  The leads, on the other hand, are implanted directly into the heart and run to the generator.)  I nearly fainted.  Really... I felt the beads of sweat instantly appear on my forehead, the blood rush from my face and my heart instantly raced.  "We DID NOT sign up for open heart surgery today," was all I could think.  I am SO NOT prepared... neither is John and, most certainly, not Gracie.  They went on to explain that they noticed some "noise" in the testing on that lead and that they would run further tests prior to surgery, but that I needed to be prepared for them to also replace the lead.  The leads are the originals placed in August of 2004.  They are nearly ten years old and it makes perfect sense that there might be an issue... it's actually a question I ask all the time.  "How much time do you think we have left on these leads?"  They've never mentioned an issue... and certainly didn't mention one in our pre-op appointment.  The answer has always been a version of, "In some ways she is so lucky that she doesn't grow much and that her activity level is not typical of a child her age, otherwise she would have outgrown her leads and her twice-repaired/re-built valve."  I always take that comment as a good cardiac outcome, but really, would much rather her be more active, bigger and have needed one extra surgery to replace something she'd "outgrown."  Anyway, it took another 30 minutes or so, but they finally determined that the need to replace the lead was "unlikely."   Good grief almighty.  I was exhausted at that point and they hadn't even finished prepping Gracie for the OR. 

Then, the nurse laid another doozie on me... "Did you bring urine?"  Me... still reeling from the massive surge in my blood pressure, "Um... urine?  No...?"  The nurse (super, duper sweet... lucky for her, because I was already done and we hadn't even started!) said, "We are supposed to get urine for any patient Gracie's age and older to check for pregnancy prior to anesthesia.  If you didn't bring any, we will have to catheterize her."  Oh. HECK. NO.  This "policy" was news to me.  It was also preposterous.  And, while I am perfectly willing to bring in urine if I am told to, I am not willing to put Gracie through a catheterization while awake due to the negligence of the pre-op team who failed to provide me with this information.  So, I told the sweet (again, lucky for her) nurse that they are welcome to catheterize her once she is out (which, of course, defeats their entire purpose) or they can forgo the urine and trust the fact that Gracie is not pregnant.  She then earned double-sweet-stripes by fully supporting my decision - - not that I needed her approval, I was standing firm.  But knowing she was in Gracie's corner made me feel so much better.  Thankfully, after some bantering back and forth amongst the team and the hospital "powers," we (docs and I) signed additional disclosures and agreed to move forward without poking and prodding at Gracie for some potty (which I had also argued they'd be hard pressed to get considering she had been off fluids for hours!). 

And then, after all of that chaos was settled, in saunters my husband.  Seriously... the man missed it all!  I had been through a virtual emotional roller coaster and he walks in as the dust all settled!! How does that even work?! Ha!  All that matters, though, is that all of the hoopla prior to surgery was the only hoopla for the rest of the day.  Surgery went well, they reconfirmed in the OR that they didn't need to replace her ventricular lead, and she spent one (long) night in the ICU.  Children's Oakland has an open-floor ICU... something we are definitely not accustomed to.  There are only curtains separating the beds, the lights cannot be dimmed enough for Gracie's liking and it is SO LOUD.  The sound, of course, did not bother Gracie, but not being able to control the lighting around us was horrible.  She just kept signing "light" over and over.  I didn't really want to leave her side for a second, but I wasn't even allowed to have a water bottle at her bedside, so I was forced to hydrate outside the unit.  I am just so thankful everything went well and she only had to be there one full day/night... because any longer and I might have gone nuts!

We are home now and Gracie is asleep.  I am hopeful that her pain will be well managed with the meds we have in our makeshift hospital.  She was very feisty on the drive home as well as when we arrived... all of her energy spent fixated on trying to remove her surgical dressing.  The fear of infection is huge for us given her history, so keeping her little germy hands away is crucial.  She understands that she is not supposed to touch the dressing, but she doesn't understand why - - not that it would make a big difference!  She is determined to do what she wants to do whenever she wants to do it.  This girl... the spunk and sass are what I love most and what are, many times, most challenging!  For now, though, she sleeps and ignores that site. 

School's IN!!!

Taking her turn during circle time...
and getting a round of applause from her teacher (blurred hands on the right) for getting it right!

 

I love that Gracie grabbed another "earth," put it on her head and went about her work!

 

THIS girl, mistreated and disregarded in SoCal - - deemed unteachable and antisocial - - had a fantastic day at school.  Here, they bend over backwards to make sure she can be at school even though we've been without private nursing since February.  Here, they believe in her.  Here, they call her the class clown because she is so social, silly and is making her own jokes.  Here, she is easily assessed (because they've taken the time to know her and understand her cues) and scores on the high-end of her CAPA testing level.  What a difference the right team and placement makes!!!  Those who gave up on her and didn't honor her IEP should be punished for the time they stole from her.

Gracie - Eleven

I quickly took this today as I dropped you off for school.  I love the light captured in your left eye...  so pretty.
Kaitlyn and Kristi had your crown waiting for you. 
I fully expect your iPad to come home stocked with pictures of your celebration!

Dear Gracie Girl ~

Here we are... you're eleven.  You are, without question, becoming quite the "tween."  You have attitude for days (that's not new, though... thank goodness... because it serves you well!), you are smart (though we can never predict how and when you'll choose to show us!), you are sweet as can be (there are hugs and snuggles for days with you... and I will always make time!), you have a really great sense of humor (you love good slapstick and you're brothers provide that regularly!)... the list is long and beautiful.  Today we celebrate all that makes you the wonderful you that you are!

So back to the attitude, Miss.  You save a good portion of it for me, but you're not too goody-goody to give your school team a regular peek or two!  I love it... hearing the stories about what you dish out (or try to) makes me laugh.  Granted, I don't laugh in the middle of the night when you are torturing me with tiny pinches, pulling on my eyelashes and my hair, or just trying to lay on top of me.  You don't do any of that with daddy... why not?!  But I love the fact that this is your version of giving your mama the tween trauma... all that mother-daughter drama that starts at this age... I get a specialized "Gracie" version and I cherish it.

As for school... you love it - - you love your teacher, Kristi (must be something there with the name?!), you love your amazing, one-on-one aide, Kaitlyn, but, sadly, you have no permanent nurse.  That continues to be a challenge since we've moved here.  Thankfully, they have offered to help you and provided a county office of education nurse to step in until we can find another home nurse.  I think you need a permanent school-employed nurse... that person would surely be more reliable and accountable.  Anyway, my point is, you missed a chunk of school this year due to nursing and we finally have you back in.  It's never simple, sweet girl. Ever.  Thankfully, you are so resilient and somehow, though I don't know how or why, you manage to trust again and move forward.  Good for you... I could use a lesson in that.

My hope in this coming year is that you continue to be as healthy as possible, that you are happy as possible and that you have as much fun as we can squeeze in.  Granted, I only have control over some of that, but I will do my very best.  I also hope that some of that sassy attitude gets directed at daddy... just a little... so he can see you for the big girl you really are!  Yes, you hung the moon... just ask him!  But you are also growing and changing from a very little girl into a little lady... it's hard to imagine... yet so wonderful and exciting.  We never know what you have up your sleeve (when you actually keep your clothes on... thankfully you're still only nakey at home!), when you'll show us the most amazing things you can do or that you know, but we are always waiting and ready whenever you are. 

Happy 11th birthday, Gracie Girl!
With all my love and my whole heart,

Mommy

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.