Celebrate Four! (Back-Blogging, Part 3)

Catherine (our friend who also happens to be a talented photographer) took this beautiful shot of Preston's hands holding his "four" balloons after his party in June.
(Note: Due to my computer issues, I am not able to upload the gorgeous, high resolution quality photos. Catherine's work is even more stunning and vibrant in the proper, high resolution. Click her link to see her amazing work... then HIRE her!!!)

Preston turned four back in May... and, though we celebrated that day as a family, it was a "divide and conquer" kind of day.  Gracie had to stay home (from school and birthday fun) due to getting over a nasty sinus infection that resulted in a pretty bad airway bleed.  So, I took her to a seemingly endless pulmonolgy appointment while John and Preston took off with friends.

They hit the park and then went miniature golfing... a cute little "birthday date."

Addie and the birthday boy... striking a seriously cute pose!

That evening, he made his big birthday wish over a dinosaur covered cake.
(Not homemade this year, though I don't think he even noticed!)

He loved opening his gifts and was so excited that Gracie got him Madagascar 2. 
He thanked her a dozen times!

I love that he is so excited still over every single thing he opens. That being said, he couldn't have been more over-the-moon-happy when he opened his "big boy" razor scooter! (See his face... above, top left!)  The "big boy" scooter has two-wheels with a wheelie bar and foot brake (insert Mommy's heart attack here), as opposed to the "little boy scooter" he had been riding with a wide board and three wheels. While he loved that first scooter and it served a very good purpose from age 2 1/2 til now, it has been permanently side-lined and is already collecting dust until it gets sent to "Baby Jack," his cousin, who gets his hand-me-downs (or anything Preston feels he has outgrown, regardless of whether Jack wants or needs it!).

Due to scheduling conflicts - - the most significant being that John would have missed it - -Preston's party with his friends was moved from May to June 5th. It worked out great for him... he had two celebrations, two months in a row. He did, however, ask what his party was going to be in July, so we quickly set him straight!

Sadly, when the party day actually arrived, Gracie had a fever and ended up missing the fun. We were all so sad, but grateful that our new nurse, Zina, (yes, we started nursing care again, 10-16 hours each week, though Gracie is eligible for 112 hours) had worked a few days with us and we felt comfortable leaving Gracie for a couple of hours (especially since we were barely two miles from home and had our phones with us). Had Zina not been there, one of us would have missed seeing Preston have so much fun with his friends on all the gymnastics equipment at Kidnastics - - the place where he used to take classes (and wants to, again!).



FUN! FUN! FUN!
(And, for those of you who know Reuben... that's him, bottom row, third picture... doing the hula hoop like a little pro!)



After all that play, the kids were so quiet eating their pizza... until they had the sugar rush from cake!
Check out the gender-division at the table... all the boys on one side, all the girls on the other.  Too funny!

(It was hard missing Gracie... all of us did... but she slept almost the whole time we were gone and I kept reminding myself that this was the perfect example of why I need to have some extra help. As much as it can feel like a burden and an invasion of privacy at times, it truly allows me to be a better mom to each of my children.)

Another shot from Catherine... I just LOVE this!

So far, SO GREAT!!!

(No... I don't mean keeping up with my back-blogging! I have determined that uploading photos is still causing my laptop to crash, so it's going to be a very slow process in playing catch-up here, but I will do it, as this is the only form of journaling/scrapbooking I do to create memory keepsakes for our family.
Now... onto the photo-less GREAT...!!!)

Last year, the summer was kicked off with Gracie's first (of five) admissions to the hospital - - the start of what I call "the summer of horror."  In fact, Gracie missed the last two days of school.

THIS year, she attended the entire last week of school and... AND... to kick off the first week of vacation, she has been a busy girl! A great weekend with lots of self-initiated physical activity, including lots of random attempts to pull to a stand (when I'm not looking... scary) and take very unbalanced steps (also scary) between things (forgetting to use her hands... scarier) which peaked with her cruising the hallway all by herself.

And then there was Monday...
We have made some changes to her PT regimen and are giving her more of a boot-camp style session. Actual exercises, with repetitions and onto the next activity - - all of this to see if we can add strength and keep her interested and motivated.  So, on Monday, her PT jumped right in. Gracie used her walker and walked from OT over to PT, got on the Total Gym (yes... you read that right... think Chuck Norris and Christie Brinkley's infomerical!) and proceeded to do some inclined leg presses.  She needed some help remembering the muscle motion for the first five reps... then did 15 with no help at all!  She took a break and did another ten with some assistance toward the end.  Then she did reps of wall squats (with balance assistance and movement queues) with a squishy ball between her knees. Then she walked over to the tricycle. (Gracie has a trike at home that she "rides" and has had it for years. She can pedal, steer, etc., but often only does it in short spurts. School purchased one for her to use at recess, etc., but it has been reported that she doesn't really show any interest, which has always perplexed me.) Anyway, back to Monday. Gracie got onto the trike (with help, of course) and proceeded to pedal her little self all the way around the therapy unit!!!  She corrected her body position whenever necessary and kept those feet on the pedals the entire time. If she slipped, she got herself back into position and kept pedalling!  Then, after riding, she walked all the way out to her wheelchair.  Needless to say, I was squealing with delight! Laural had intended to add a goal about riding the trike... instead it's going to be the reward! My girl blew-up PT on Monday and I was so proud! (Might I add that all of this was following a lengthy Neurology appointment and a half-hour of OT!!!)

Not to be outdone... Tuesday was Preston's day! 
(Last year, because of the summer of horror, Preston's swim lessons were canceled.  With all that was going on with Gracie, we just couldn't make it happen logistically.  The summer before also had logistical challenges, so he just started last week for the very first time.)

Tuesday morning, Preston had his third swim lesson.  When he started last week (yes, there are pics... but sadly, I can't get them on here!), it went great.  John and I both got to watch and it was so much fun seeing our fearless little man step up to the challenge.  Monday was his second lesson and it was a small disaster, riddled with tears, clinginess and borderline hysterics... what we would have expected on the first lesson.  He rallied for the middle of the session, but I was fearful that our inability to get him started younger was going to cause permanent damage.  Tuesday, daddy took him and he rocked it!   He came running through the front door with his Level 1 bracelet and said, "Mommy, I passed Level 1 and got three rings off the stairs with my whole head in the water!"  Phew!!!  I was so proud of him!

Then, they took off for the park.  John was going to run there and Preston ride his scooter, or so I thought.  Preston rode his bike... all the way to the park and all the way home... without training wheels!!!  At the age of four years, one month and five days, he's officially without training wheels on a 14-inch bike.  Such a big day for him!  That evening, we went for a walk as a family and Preston rode his bike... through gravel and big rocks, over grass, over small curbs... he tried skidding... he took his hands off the handlebars for a split second... and I... I kept checking my pulse!  I just can't believe how big my little man is.  Sigh. 

So far, this summer is SO GREAT!
Can't wait to see what my kids do next!!!

Celebrate Eight! (Back-Blogging, Part 2)

Due to circumstances beyond our control (like illness, work schedules, etc.), our unintended theme for the kids' birthdays this year is "postponed celebrations!" 

On Gracie's actual birthday, she, Preston and I were all sick - - Preston was not nearly as bad as Gracie and I - - we both had pneumonia. Anyway, John was out of town and we had no intention of celebrating until we were all better and daddy was back. But, knowing it was his sister's birthday, Preston insisted that she needed a cake, candles and a wish. I loved that he wanted to do that for her, and even though she couldn't have cared less and I felt terrible, it was so important that he be able to help make her cake and celebrate a bit.

While the birthday girl slept, Preston was my little helper (egg cracker, spatula-licker) in the kitchen. 
That night, she was a good sport and sat up long enough to watch him make a wish and
blow out the candles on her behalf.  I think she knew it mattered to him!
Besides something for himself (no surprise!), he wished that she felt better (no surprise there, either!).

A couple of weeks after the actual day, and while Nana was visiting,
we finally celebrated Gracie's 8th Birthday. 
She had a great time opening her cards and presents as well as playing with her new treasures.

Just as he had two weeks before, Preston helped Gracie make a wish and blow out her candles.
Since she was feeling better, he instinctively gave her his hands to play with
so she wouldn't grab the lit candles.
And, this time, we had to gently remind him that this was her wish! 

Best Surprise EVER!!! (Back-Blogging, Part 1)

Well, between my laptop constantly shutting down every five minutes and some seriously sick people in the Swann house for the last seven weeks (at least two of us have been sick since the first week in April... well, three, including the laptop), this blog is in (yet another) sad state of neglect.  I am way behind and will be making a concentrated effort to catch-up and stay current over the next few weeks.  We'll see how that goes... and if my laptop cooperates!

The Saturday before Easter, my mom (Nana) was scheduled to arrive for a six-day visit.  She'd been in Northern California working the previous week and we were lucky that she was able to work remotely from our house and visit with us.  Knowing way in advance that she was coming, my brilliant sister-in-law (Vanessa) concocted a plan to have my brother's family (Brian) drive from Arizona and come surprise Nana.  My mom hadn't seen them in about 18 months and so hadn't yet met Makenzie, their eight month old daughter. 

But, in true Swann fashion, a brilliantly planned surprise (for which we were all SO excited) could not go off without an element of drama.  Saturday morning, Preston woke-up at 4am, crawled into bed with John and me.  At 6am, he sat up, said "Mommy," then threw up all over our bed and proceeded to get sick every twenty minutes for a couple of hours.

  

This is what our sad little man looked like for a while...

Then it just stopped and he was fine.  He hadn't eaten dinner the night before (because he fell asleep at 6pm while it was being made), so we didn't think he was sick from something he ate.   But, because of this, Brian and Vanessa were understandably hesitant to come hang out - - and they'd already driven the eight hours (with two kids and three dogs) the day before.  In the meantime, my mom called to say that her flight was delayed (over three hours in the end).  Brian and Vanessa actually contemplated not staying in town and just heading back to Arizona because we weren't even certain how long it would be before my mom could get on a plane. And really, I couldn't blame them... a 2 year-old and an 8 month old... who'd want them to be exposed to the flu?!   I was a wreck and in tears thinking that we were so close to pulling off such a great surprise only to have failed.  I couldn't believe that Vanessa had put together this great plan and it wasn't going to happen.  We made all kinds of alternate arrangements, jumped through some additional hoops and then, since Preston was tolerating fluids and crackers, decided in the end that it wasn't the flu, and the surprise was back on...but not without me aging a bit in the process!

After a few hours, Preston was back to normal and the boys were playing.
Aren't they so stinkin' cute together?!

Gracie and I picked Nana up from the airport.  John, who was off work with a bad back (he looked like an "S" which just added to our drama... he is still sore), was home with Preston (who couldn't have possibly kept the secret as excited as he was!).  When we walked in the door, Preston called for Nana from Gracie's room... and when Nana walked in, only Makenzie was sitting on the floor.
 





Nana was stunned, then cried... and then Makenzie cried, too!

As Nana walked in, she was confused for a split second, even turning to me to ask, "Who is this?" and then realizing, before the whole question came out of her mouth, that it was her granddaughter!  It was, by far, the best surprise EVER!!!

My beautiful mama, my beautiful sister-in-law and my beautiful niece



Nana and Jack having great fun bonding at the water table.
They were both cracking up as Jack soaked her!



After a change into some dry clothes for Jack, their fun continued!



More Saturday afternoon fun... bubble blowing, egg dying and cars!



Gracie, our shirtless wonder, enjoyed the weekend, too! 
She loved having everyone around and, despite not feeling 100%,
had a blast playing with the Rapunzel doll she received in her Easter basket!
It has provided her with hours and hours of enjoyment!

I just love these two pictures... for very different reasons!



It rained all Easter morning... but that didn't stop the boys from rolling up their pants and getting their feet wet to find a few eggs.  The big ones had hot wheels in them... which they both loved!



So cute... even when she's crying!



Nana and her four grandchildren - - in the same place, at the same time - - for the very first time!
Best surprise EVER!!!



Happy 8th Birthday, Gracie

Your name card that was taped to your incubator in the NICU.
I think it's fitting that we chose the one that read, "... pixie dust sprinkled here..."

My dear, sweet Gracelyn Marie ~

Today you turned eight.  Although time passes too quickly and I often wish there was a pause button to press so your birthdays won't come as fast, I am also relieved to bid farewell to your seventh year.  It was, in so many ways, the hardest year of your life - - so many medical complications that lead to setbacks in numerous other areas.  Sadly, you were much too sick today to even care when each of us wished you a happy birthday.  We spent what should have been a fun, celebratory day, doing breathing treatments every four hours (along with a couple for Preston and me, too), Vest treatments every six hours, giving you intermittent blow-by oxygen (for support, so you wouldn't have to work quite as hard), and doling out medicine, etc.   (Daddy has been spared thus far and actually left town this morning for a work event, so our official celebration was to be postponed anyway.)

In some ways, today was not unlike your first day of life - - you are really sick and fighting hard.  However, on your actual birth day, you were whisked away to the NICU at a different hospital and, due to my c-section, I didn't see you for another day and a half.   Today, I got to spend the day cuddling and holding you in between all the madness of our makeshift hospital. And, in the moments that you felt some relief, I was right there when you smiled, played with my hair, held my hand and signed, "I love you."   You never, ever cease to amaze me with your strength, resilience and happy, loving spirit. 

Your brother knows we are celebrating when daddy is home and you're feeling better, but he still insisted on giving you all of his favorite toys, including his treasured dinosaurs which he "wrapped" yesterday.  You smiled at him and even chuckled once as he slid another truck over to you, to which he delighted, "Look, mommy, Gracie feels better for her birthday!"  I wish that were entirely true, but you did seem to be showing a bit more sparkle at the end of the day... enough that I took you guys out back and set up some shaving cream at the table.  While you never cracked a smile and rested your head on the side of your chair, you did play intently for about twenty minutes.  After that, you sat on my lap and quietly watched Preston play.  And, even though he knows you can't actually eat cake, he was adamant that "the birthday girl needs a cake... it's her birthday toooooo-day, Mommy," so we baked you a vanilla and chocolate chip cake in the shape of a flower. 

While we are postponing our official celebration of your birthday, and though (for the most part) you've been "missing" since last Sunday night, it's not hard for me to celebrate all the wonderful things that make you you.   The list is long.  Here are some of my favorites, in no particular order...

- You love to cuddle, kiss and hug.  For the longest time daddy and I wondered if you would like to snuggle... you used to be so uncomfortable cuddling for too long... you'd get sweaty, gaggy and fall asleep.  Now, you can't get enough and have a definite expectation to cuddle with daddy from the time I start the dinner dishes until you go to bed.  You often ask for kisses by signing "kiss"... and you get an endless supply.   You also pucker your lips to ask for them (which I love because only the left side of your bottom lip sticks out) and I have to stop myself from kissing the cutest-lips-ever right off your face!  When you hug, you don't mess around - - a tight squeeze accompanied by a gentle back pat or rub.  It is the sweetest, most heart-warming thing.  I am grateful every single day that you are an affectionate child.

- You love your brother.  So much.  It warms my heart to see your face light up when you see him and I love when you sign his name when he isn't home, asking, "Where's Preston?"   You've been mesmerized by him since the first moment you saw him and you continue to be as gentle with him today as you were when he was a baby... even when he "wrestles" with you.  We have to assist you to "tackle" him back, but you definitely aren't shy about telling him "no" or pushing his hand away - - which I love.  For the most part, he easily makes you laugh and smile... more so than any other person in the world, with the exception of your daddy.

- You are silly... and it's genetic.  While I can be silly and playful, Daddy just is!  You and Preston get that from him and I am so glad. 

- You are quite the social butterfly.  Up until just a few years ago, going new places (unless they were outside) and meeting new people was awfully terrifying for you, so much so that you'd get worked up enough to make yourself sick for days.  Now, wherever we go, you make sure that you're a part of the action.  Whether in your chair, scooting on the floor, or travelling lap to lap (and requesting a new lap by lunging to the next person) you make your presence be known and "say hello" to everyone.  Your expressive language may be limited, but that doesn't stop you, in any way, from communicating with the people around you. Instead of conversation, you use touch and your keen instincts about people... you might be polite and interact with everyone, but you know who's genuine and prefer those individuals.  I really like that about you.  Good instincts are important.

- You are strong-willed.  This is something I adore about you... it means you're thinking and that you have an opinion... it is also something that frustrates me to no end!  Whether it's something you want or don't want, you make your needs be known and you will not give in easily.  Sometimes you'll relent... but only if I explain things in a first, second, third scenario.  That is, as long as what you want (or don't want) is in the line-up, you will (might) back down. 

- You delight in the simple things.  Watching the breeze tousle the leaves in trees and inspecting the fine details of every petal on a flower can occupy you longer than any toy.  You love dirt, water and anything hands-on like play-doh, finger paint, shaving cream, slime.  It's funny, too, because you used to dislike any tactile activities like that.  Now they're your absolute favorite.  You seem to love playing with everything that's scary to have near your trach!

- You are happy... and quite frankly, that amazes me.  Your days aren't easy... even your best include some sort of discomfort or pain and yet, you manage to dole out endless smiles and "I love you's" - - which also proves how incredibly resilient you are.  You defy odds every day and your spirit defines strength, bravery and resilience.  I'm constantly in awe of and inspired by these qualities you bear and wonder how someone so small and so young could be made up of such tough stuff.
Must have been all that pixie dust... amongst other powerful things. 

I love all these things - - and countless more - - about you, Gracie Girl.
Happy 8th Birthday... I hope this is your best year yet.

All my heart,
Mommy

Faces

I take lots of pictures in an effort to get one cute photo of my kids together. 
Lately it's been a difficult task due to several factors, not the least of which being that Gracie is often not clothed (indoors) and Preston is often moving at the speed of light.  So, today, as we headed around the corner with friends to enjoy our first carnival of the season (our community has several this time of year), I quickly clicked away at my two favorite faces. 
This is what I got...

LOVE this...

LOVE this, too!

And I LOVE all of these! 
I love that Preston is holding Gracie's hand.
I love that he tickled her to get her to smile.
I love that she pushed his hand away and laughed at him.
I LOVE how much they adore each other.
(I also LOVE that, once again, Gracie kept those sunglasses on for a really long time!)

At the carnival, Addie (another one of my favorite faces!), Preston and Gracie all got their faces painted for the very first time.  They waited (more patiently than the adults!) in a long line and sat super still while their masterpieces were being completed!


Gracie got a pretty heart, Addie got the "princess" artwork and Preston chose the snake.
(Note: It's April 9th and we're wearing sweatshirts in Southern California!  We even had hail yesterday!  Brrr...)

So excited about their finished products!

Bubblefest

Little pleases and impresses Gracie more than bubbles. Most kids like them, including Preston, but "like" is an understatement for Miss Gracie. So, when our friends mentioned that Bubblefest was starting at the Discovery Science Center last weekend, I knew that getting my kids there was a priority. Thankfully, little miss lovesick was able to drag herself out of bed on Sunday to enjoy a fun-filled afternoon.



I'm so thankful that my "on-it's-last-leg" camera managed to get this shot.
During the finale of the show, she signed, "happy" "more" and "bubbles" completely unprompted.



What we saw onstage...

...What the kids looked like watching

The kids in Elmo's World

Preston and Addie were excited to see Elmo, which was surprising since Preston is so unimpressed with Elmo at home!  Gracie, who still really enjoys Elmo, was completely unimpressed with him in person!  Her expression cracks me up... I think she is looking at him and wondering two things: 1) What the heck are you doing here? and 2) Why are you so big?

In the "super whippy wind tunnel" as Preston described later to John.

Gracie wheeled herself into a wind-tunnel, signed "wind" and started to roll back... She grabbed onto her wheels and cracked up.  For a kiddo who can't blink to protect her eyes, she sure does enjoy the wind!

It was such a fun day (but for the ridiculous crowd!) and there were so many interactive things that were set up for Gracie to enjoy, too.  I look forward to taking full advantage of our new membership and intend to take my girl back to the bubble show at least one more time while it's here.

Pimp My Ride



Phase One of Pimping Gracie's Ride - - her newly embroidered canopy!
Miss Thing thought she was all that and a bag of chips cruising the mall Friday!

 Because Gracie's chair is "uber custom" and has parts from various manufacturers, we were limited on our choices of colors to make it cute and girlie.  The options for her frame were either too dingy or way too neon for our liking (especially knowing we'd have to live with it for many years to come) and there are so many types of fabrics involved in her seating and canopy that coordinating colors was impossible.

Thankfully, Gracie's awesome PT, Laural, had a plan (and a kind heart, selfless spirit and a mother-in-law with an embroidery machine!) to help spruce up the canopy.   We picked up the panels at therapy last Wednesday and every single place we've been since then, I've had people come up to me and say the sweetest things about her customized canopy.  Gracie thinks it's pretty snazzy, too... she keeps pulling on the front flap and trying to look at it!  Stay tuned for Phase Two!

Lovesick

Friday was the first day of Gracie's spring break (technically a furlough day) and, aside from appointments, I kept my girl busy with a bit of shopping at the mall.  For about two hours, she wheeled herself all over, taking only a few breaks from being in control of where she went.  She loved looking around Old Navy - - I think the bright clothes, freezing cold air conditioning and rocking music that she could feel vibrating in her wheels made her happy.  She did try escaping from me a few times, which only made me smile (since we weren't crunched for time!), as I do love her strong will and desire for independence.

I must have worn her out something fierce, because she spent the better part of today just hanging out in bed with her feet propped up on the wall, no urgency to get up and be busy.  She was happy, just lazy.  Then she took a nearly three hour nap and I half expected that she'd wake up not feeling well. 
Perhaps she's fighting another bug... OR... Perrrrhaaaaaaps...
She's pining for her "sweetheart" whom she won't see again until the 11th!

My little girl is most definitely crushin' on this young man!
Just look at that expression in her eyes! 

The adorable young man in question is a first grader in Gracie's class (way to go my little cougar!) named Christopher.  (Sorry Christopher Clayton... apparently in Gracie's case, absence makes the heart wander! LOL! She will always love you, don't you worry!)
He is an absolute doll - - a sweetie pie who loves taking care of Gracie and helping her whenever and however he can.  I've seen them together on a few occasions this year... one of the cutest was when he held Gracie's hand on stage during their Christmas performance.  From the googlie eyes she's making (can you blame her..? look at how cute he is!) and the precious stories Gracie's teacher and aide tell me about their interactions together, things have clearly gotten more serious!


Let's hope that this young man comes back from break having missed my girl as much as I suspect she's already missing him!  About half the time I show her his picture, she signs his name along with "sweetheart."  Granted, she doesn't understand what that means, but she definitely understands that cute little sign is reserved just for him!  The next eight days could be very long for my lovesick girl!

(For those of you who are wondering... yes, her sweetheart also has CHARGE Syndrome.  Including the happy little couple, there are a total of six kids with CHARGE in the program.)

Atta Boy!

Our little man loves himself some sports!  Playing... watching... even on the Wii... he takes what he can get! Thanks to used sporting goods stores, we have been able to stock our garage full of all kinds of gear so that he can play whatever his heart desires at any given moment.   And, if you ask him what he's going to play when he gets bigger, he'll say, "In college, I'm going to play..." and then proceeds to list pretty much every single sport you can think of... too funny. 

In February, John and I took him bowling for the first time. We used the bumpers, of course, but he actually bowled and only used the little ramp they provide a couple of times. He used a seven pound ball and played two full games... and legitimately beat me in both!

In mid-March, the boys were out and I got a picture text from John, it was of Preston... putter in hand... and a message that read, "DUDE... he got a hole in one!" A bit later, I received a second message indicating he'd gotten another! It was his first time playing! They went twice that week, golfing both 18-hole courses, and went again this week! It's time for the real driving range now!



I'm fairly certain that a set of clubs (used, of course) are in this kiddo's future!

 
On March 1st, John took Preston's training wheels off... and this is how he did!





(They're back on now... but that's because I want them on! I'm too nervous trying to keep him safe while also keeping Gracie safe in her chair! It's just a matter of time, though, as he wants to practice with Daddy every chance he gets!)