Fairyland Family Fun Day

As a fun family outing to celebrate Gracie's birthday, we went to Fairyland in Oakland. It was a beautiful, warm (but not too warm) Sunday and everyone had a wonderful time. So thankful to Nana for the great suggestion... it was a perfect day for Gracie.
(It can be really difficult to plan a party for Gracie as her health is so fragile and unpredictable. We decided that we'd do a family outing that she'd enjoy instead of hosting a party that could, quite easily, fall right in the middle of a migraine cycle for her. It wouldn't be about her if we were having a big shindig that she couldn't/wouldn't enjoy or would cause her undue stress!)
 

Our beautiful birthday girl!
Gracie thoroughly enjoyed all of the varieties of plants, shrubs, flowers and trees at Fairyland.  She spent a ton of time inspecting leaves and flowers as we strolled through the many gardens on the property.

Hilarious to me... Preston was being a ham after watching me take a gazillion pictures of Gracie with a dandelion in the parking lot before we'd even entered the park.

All three kids loved the old, small carousel.
Gavin is not pictured as I couldn't manage to hold him and take a picture at the same time!

Snippets of the Gav-man enjoying Gracie's birthday outing.
It just so happens that the baby girl in the top left picture shares the same birthday as him.  Gavin was trying so hard to talk to her about the "mama" aka, Snow White.  He was adorable looking at the various character and animal statues.

Gracie enjoyed the magic show for about ten minutes.  Unfortunately, the first ten minutes were mostly really corny jokes and, by the time the action started, she had totally lost interest.  Preston, however, had a blast. I'm not sure who had more fun, Preston watching the magic show or John and I watching him while he watched the show.
At one point he terrified us by moving seats when the man was about to juggle "blades" and told the kids in the front row to watch out for their lives.  He moved so fast that it took us about three minutes to realize where he had gone... still near the front, but way over to the side!  LOL!  He LOVED the juggling and fire-eating.  His facial expressions were priceless!!
 

'Nuff said.  We have to get better about making sure we are in pics with the kids! 

 

A picture is worth a thousand words... so here are several thousand about how much our girlie loved her special day!

Gavin... all smiles with rocks in his pockets, rocks in his hands, rocks in his mouth... that about sums up what's going on anytime he is outside right now.  Well, that and one of his brother's hats if he can get his hands on one!

If it can be climbed up and jumped off, Preston will find it!

The Gracie Update

It’s time for some serious catch-up on all things Miss Gracie. To set the record straight, it has not been my intent to exclude her from updates here. In fact, I have so many partially started posts sitting in blogger, that it’s shameful! The problem is, Gracie’s updates require a great deal of explanation and, well, truth be told, gathering my thoughts and getting them put to paper (or screen) has been very difficult the last several months. The move (so much surrounding that should be its own post!) and taking care of three kids (two of whom rely on me completely for everything) have made the more thought-full blog posts take a back seat. I’ve just been too overwhelmed with the day-to-day - - we are busy living!  

All dressed... and finally somewhere to go!
Gracie was super excited on her first day of school! (I was a nervous wreck!)

I’ll start with the best news… Gracie finally started school on Tuesday, September 18^th… after over five months total out of the classroom.   We weren't sure what she could handle after so long out of school (but for a couple of visits to her new class while we waited to find nursing).  In true Gracie fashion, she was gang-busters for her first day and when I stopped by the class just before picking Preston up (they are on the same campus!!!), they told me she was fine to stay the last full hour.  She was signing, responding to questions and involved in the day.  I walked out of the room with tears in my eyes.  Happy tears.  Relieved tears.

My quick snapshot of Gracie Girl before we wheeled her into class.
 I didn't want to make a big fuss, but still tried to capture her... It's not the best picture, but the moment was big and I wouldn't be me if I didn't try to capture it!

Before she could start school here, we had to establish private nursing at home  (and that nurse would attend school with her).  Accomplishing that task proved to be (just as I figured it would) quite difficult.  We don't exactly live in the most convenient community as far as commuting goes.  (That being said, we are finding that, even though this is a small community east of Mt. Diablo that was comprised mostly of orchards and farmland only two decades ago, it is proving to be very "special needs" friendly in many ways.)  Because of our location, we met only four nurses over the course of two months… one of whom basically admitted liking dogs more than kids (and was 30 minutes late and sans bra … and that wasn’t a good thing!) and another who, though super nice, would likely be relocating in six months.  Then we met Girlie, Gracie’s new nurse.  She worked a full week before we had Gracie start school and has now been with us a month.  Girlie has taken a definite interest in learning to sign the basics with Gracie and Gracie seems to like her.  (Because of the timing of our "modified year-round" schedule, Gracie has only had 8 days in the classroom - - the first two weeks of October are the fall break. I look forward to Gracie getting back into the real groove of school this coming Monday.  And, if I am being totally honest, I am just plain looking forward to both of the big kids going back to school!) 

I haven’t met Gracie's entire school team, but obviously know her teacher and aide… both of whom I adore.  Everyone within the district and county has made a huge effort to get Gracie into the classroom as fast as possible and has gone the extra mile to make her transition happy and seamless.  Thus far, the communication with me has been fantastic and the classroom has an open door policy, so I can drop in whenever to check out how things are going.  So far, so good.

As many of you know from communication outside the blog, we pulled Gracie out of school in April.  The details will not be posted here… at least not for now.  Suffice it to say, we take her education and school experience seriously and pulling her out of her program was not a hasty decision, but the circumstances surrounding (what turned out to be) her last day required quick action on our part.  As we searched for new placement and subsequently found what looked to be a great school, we learned that John was to be transferred back to Northern California.  It seemed unfair to start Gracie in a new program in late May, have her attend for a few weeks of the regular school year and only two weeks of the extended school year before moving her 369 miles to start all over again.  More than any of us, Gracie was facing so much change in such a short time.   Her world had been full of goodbyes… some explained prior to them happening (like losing her long-time Occupational Therapist when she moved away in January) and some just happened.  Even though we felt she was better off not returning to her school placement, she lost her familiar routine and the people in it, including all of her peers.  With the move, she lost the familiarity of our friends, our neighborhood, our home, her wonderful nurse (tireless advocate, friend, park pal, playmate), Pearl, her great therapy family and her doctors (some of whom we adored).  Everything turned on a dime for Gracie and, unlike the move in late 2008, she didn’t handle it all that well.



Gracie cruising on her favorite trike during her last day of Physical Therapy before the move.
Behind her is the wonderful Director of that therapy unit, Kristen, and her beloved, dedicated PT, Laural.
We both miss our old therapy family so much!

 

Miss G working the stairs with Pearl and the top motivating her with toys and Laural helping her press on.

 

With Kelsey, her sweet as pie Occupational Therapist

With Laural... whom we not only loved as Gracie's PT, but also as a friend

The goodbyes were so hard for me - - not just because of my own feelings about leaving - - but because as Gracie’s mom, I knew that her world was in the process of literally tilting on its axis and I had no guaranteed way of helping her fully understand it or protect her from what she would feel as a result.  Our decision to move was family based… not Gracie-based.  That is, while we naturally must consider all of Gracie’s specific and particular needs first, we must consider the fact that we are a family unit and decisions like a big, life altering move must consider Gracie, but not only Gracie.  There were a lot of tears shed on my part… for all of us.  But the biggest ones have come since the move, wondering when and how things would start to settle for her… and inside those tears was (is) a lot of guilt for disrupting her world so much.

Pearl and Gracie heading out on one of their park outings.
We miss her tons!

For over two months, she was depressed.  Her feedings, though always challenging, became more of a struggle.  Her behaviors became more challenging.  She was unmotivated to do much of anything. Granted, in the first days at the new house, she was eager to check things out, but for the most part, she just hung out, unmotivated to play or walk much.  And, because it was extremely hot most days, she didn’t even get the chance to be outside much except for first thing in the morning - - a huge change from living just a few miles from the beach.   With the exception of our immediate family, every bit of her routine and the people in it, was taken away.  She even lost therapy time because she was wait-listed for the first two and a half months after we relocated.  Between July 13^th and September 18^th, her good days could be counted on one hand. 

Thankfully, there was good in there and... we took pictures! 



Life of leisure in the pool!
The first weekend after we moved, we drove halfway back to our old house to spend the day with family.
To say that Gracie thoroughly enjoyed their new pool would be an understatement! I think if Gracie understood the concept of a wish, she'd wish for this in her own backyard!

Hanging with Daddy... one of Gracie's favorite things.

Another good thing... John is off on Sundays.  This hasn't been the case in nearly four years!
On one of John's first Sundays off, we took a long family walk, stopping for lunch and park time.  Gracie spontaneously signed "happy" and "family" while we were lunching.  That, I can assure you, made up for a lot of really rough days for me.  Gracie's simple expression refueled me on so many levels.
 

Hanging with Gavin... Gracie seems to enjoy him as much as she did Preston at that age.
I think she remembers a lot from that time, too.  She chuckles at him regularly, even from across the room and has, on more than one occasion, signed "cry" when he's fussing. 

Hanging with two of her most favorite people in the world!

I love this!  I was loading up the car and signed to Gracie, who was in a different room than Gavin, that it was time to go.  I came back inside after taking my first load of stuff to the car to find that she had not only crossed the house, but had brought him his chewy ring, and was sitting up like this in his car seat to give it to him! 

So, it hasn't been all bad... just not an overabundance of good.  The important thing is we appear to have passed that really tough space and, with the exception of getting "medically re-established" (9 specialists, a pediatrician, a dentist and several therapists...), we are on the other side of a lot of hard stuff. 

(A little "good" teaser... Remember the blue feather from last November?  There was a "blue feather" day recently - - actually, it was more than a day - - stay tuned for that cuteness!)

A Great Day

Today was a good day.  Actually, it was a great day!

• Things went smoother at home with Gracie's nurse and getting her off to school.
• For the first time in over a month, John and I got to take Preston to his swim lesson together.
• Preston ROCKED said lesson.
• The three of us had a breakfast date where our little man gave us a glimpse of how "refrigerator poor" we will be in just a few years by eating: Two scrambled eggs, two slices of bacon and three pancakes.  (He had already eaten a bowl of oatmeal before swim lessons!) Good grief.
• After breakfast, the three of us went miniature golfing.  It's the first time I've been able to go with them and Preston thoroughly enjoyed having both of his parents all to himself.  John and I really enjoyed it, too!
• Gracie (and her nurse) had a really good day at school!!!  (Woo Hoo!!!)
• The four of us played out front for the remainder of the afternoon... so fun.  Gracie rode her trike for about 30 minutes and kept her clothes on the entire afternoon!  (Shocking!)
• John made a wonderful, healthy dinner.
• While I cleaned up dinner and prepped meds & formula for the night and morning, John played with the kids and read them a few books.
• Chores and baths were done, lights were out and we were all piled on the couch for "Wipeout" at 8pm.

Such a great start to September!

Moments in May (Back-Blogging, Part 5)

May continued to be a tough month health-wise, not just for Gracie, but for all of us... bronchitis, sinusitus, etc. No bueno. The ick did not, however, prevent us from enjoying ourselves in the spaces between!  Aside from Preston's birthday, here are some of my favorite moments in May...

May 1st
Hold the phone... Gracie has clothes on inside the house!!!!
We were headed to our community's annual festival on a beautiful, sunny day.
Love this - - even with Preston's "cheese" smile.  In the one with a real smile, Gracie wasn't smiling.  Figures!
(For the record, she had her shoes off and was working on her shirt by the time I got her wheelchair out!)

Later that day, cooling off on the back patio playing Zoodles on Mommy's phone. 
Though the photo obviously doesn't capture it, Preston was explaining all kinds of games to Gracie.
They hung out like that for about 45 minutes... so sweet.

May 2nd
More beautiful weather made for an ideal "Mommy & Son" beach date while Gracie was at school.
I love that my little man loves the ocean as much as I do.

May 3rd
Both in outfits of their own choosing (she does have on a diaper, FYI!),
the kids enjoyed another warm evening playing in the backyard! 
Gracie loves to go fast and Preston loves to push her!

May 5th
With the Jacaranda trees in full-bloom (which make me so very happy),
Preston and I spent a good part of the afternoon at the park, lunching and playing barefoot soccer. 
He knows I love these trees and points them out to me anywhere he spots them.

I love looking at his hands in these pictures... he is concentrating all the way through his fingertips!

May 14th
Day two of an eleven-day stretch of "space between" for Gracie. 
This little girl makes me so happy... and never ceases to amaze me. 
After a solid week of feeling awful and barely tolerating one quarter of her daily caloric need,
she wanted up so she could cruise the kitchen and "cook" with mommy. 
Since "cook" is a two-handed sign, it was interesting watching her motor-plan
to execute the sign while maintaining balance.
The solution:  forehead on the counter to stabilize herself while signing.

May 21st
They were hanging out... and as I started to take a picture of their cuteness, Gracie took a pretty decent tug on Preston's hair... not with the intent of hurting him, of course, but it did.

Preston sweetly explaining to Gracie that she has to be gentle.
Ha!  Pot... meet Kettle!!



May 22nd

Miss Gracie likes herself some tight, confined spaces.  And, while she loves playing on the trampoline, on this day, she played under it for hours, literally.  We kept getting her out and she kept going back.  She was obviously seeking that type of environment, so we let her stay, knowing that she is fully aware of what her body needs.   Every once in a while, Preston would exchange her toys, but other than that, she played alone and was happy as can be, and happy is the whole point, isn't it? 



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.

Family Reunion

Since my sweet girl is, sadly, down for the count with yet another abdominal migraine cycle and I'm up with her suctioning a lot, I thought I'd use the time to do a little holiday catch-up on the blog.

For Thanksgiving, we took a road trip (a total of 18 hours in the car with traffic... the kids were better behaved than their parents!) to Arizona to visit my brother and his family. I couldn't post (or I guess I should say, "didn't want to post") pictures of the trip because I wanted to make photo books as Christmas presents. Now that the holidays are over, some of the amazing shots taken of our little family reunion need to have their glory here on the blog!

"The Men" captured as we walked through downtown Prescott
We had such a great time with them, and despite the fact that the dry, cold air wreaked havoc on Gracie's trach, she traveled like a champ (and was still wanting to be naked in the below freezing nights!). It was great fun seeing all four of the kids together, especially my nephew, Jackson (20 mos at the time), with Preston. They were adorable to watch - - Preston thinking he was "all that" as the older cousin and Jack looking admiringly at him. The trip was a long time coming - - we hadn't seen each other since Jack was about ten weeks old - - and I can't wait until we can visit again, soon! My dream would be for us to end up living near each other so that the kids can grow up together and pictures like these would be a regular occurrence.

My brother teased that I was like a tourist, clicking away the entire time. Now, though, I think he's super grateful I was stalking everyone like the paparazzi! I can't post them all, there are too many, but here are just some of my many favorites!

My brother, Brian, with my nephew, Jack, and me with my kids.
(My niece, Makenzie, was home that day with my sister-in-law's mom.)

Such a nice looking group of men, if I do say so!

Gracie loving on my adorable niece, Makenzie.
Gracie used to play with Preston just like that for hours on end!

Boys and Sticks... the perfect combination!


My gorgeous sister-in-law, Vanessa, with sweet Miss Mak

The kids having a blast playing in the leaves that were piled high in a courtyard outside a cafe (where I happened to have the best latte in my life!)

"What?!"

"What?" Gracie signed, as I stood near the photographer trying to get her to look at the camera and smile on picture make-up day.

Since Gracie was scheduled to get her picture taken right when I dropped her off on make-up day, I stayed to help. It was comical... my girl wanted to turn around on the little chest they have the kids sitting on. She wanted to smile but turn her head completely one way or the other - - never front and center. So, when she opened her mouth wide and signed "What?" at me (which she does often) and I heard that the photographer got it, I knew that would be the picture I chose. Turns out there were two I liked, but this one, is by far, my favorite. It is so quintessentially Gracie and makes me smile, even chuckle, when I look at it.

We continue to deal with infection type illnesses (on top of abdominal migraines) and CHOC's Infectious Disease team has been following Gracie closely. We have become regulars at the lab, going nearly every week since October for multiple vials of blood at a time. The last visit, Gracie wheeled into the room, stuck out her arm with confidence and tapped the crook of her elbow with her forefinger. She is "trooper" defined - - she even watches the whole process and is clearly more bothered by the tourniquet than the needle itself.

Thus far, we've learned enough to create more of a mystery. In October, Gracie had strep-pneumo (Streptococcus pneumoniae) which lead to her pneumonia and another ICU stay. This is something she was immunized for as a toddler. We would expect that with the recent exposure and the immunization, she'd have at least some antibody response. You or I would... at least something. But, Gracie didn't. Zero. Nada. Zip. The Infectious Disease team is puzzled and ordered more lab work to test her antibodies to everything else she has been immunized for in order to see what her responses are. From those results, we will (hopefully) come up with a plan. The expectation is that Gracie has some sort of autoimmune disorder, but if one thing is certain with her, it's to expect the unexpected. I'll post more as we learn.

Back to the good stuff... Gracie's longest stretch of "space between" has been two weeks and five days. Since the last post about the shopping carts, we've had two periods of good space and, as it turned out, that longest stretch had perfect timing. Though John took a tremendous amount of leave over the four month period when Gracie was in the hospital a total of 48 days, he still had a two week vacation slated during Thanksgiving and the week prior. We tried to get him back on the schedule for one of the weeks, not wanting to use up more of his leave in case it is really needed. Turns out, it was needed... for all the right reasons. The long "space between" for Gracie fell directly into the time John was off... and we enjoyed every bit of it. (She lost four days the first week of December due to an abdominal migraine cycle, but has been back "in the game" since Monday the 6th.)

In our true "seize the moment" mindset, we have made every effort to capitalize on the moments that truly allow us to celebrate the "space between" and, even if just briefly, forget about the space to come. Whether it's the little things - - something Gracie did at school, sweet things that Preston says, milestones reached, or the regular, day-to-day stuff that makes me smile simply because it's regular, day-to-day stuff (like the shopping cart)... or the big things (like our family trip to visit my brother and his family in Arizona for Thanksgiving), there has been much to celebrate.

In addition to her remarkable resolve at the lab (which, while sad on the one hand because she is so familiar with the process, is actually really happy in that she is tolerant, she understands and she communicated clearly), Gracie has been feisty, full of energy and making progress on all levels. She has, in recent weeks...

- started back to therapy (Occupational and Physical Therapy... twice a week each, after school. Hopefully, after the start of the year, she'll resume VitalStim.) She is working hard and though she's lost strength and stamina in some areas, she has increased in others. Her (vastly) improved nutritional status has made a tremendous positive difference, but has also caused a need for her to get reacquainted with her body, as it is 25% heavier and she is growing.

- has started doing her vest therapy in all kinds of positions... sometimes for postural drainage reasons, which is really quite smart! She also has been scooting on her bottom (more than her back), pulling herself up to stand more, requesting to stand more and cruising furniture (to the point that I'm afraid to step away!)


- wheeled herself around the Aquarium of the Pacific in Long Beach for the first time. She had a ball! She does, however, have a lot to learn about following directions (she LOVES being in control of where she goes and when, much like a toddler!) and the personal space of other people. She will just wheel herself right up to someone and wrap her legs around them or touch them if she wants to get more acquainted! Cute, but also not necessarily appropriate!


- come home with this note in her communication book...

"Hi Kristi,
Gracie worked well today. She did great in APE. Gracie caught the ball. Betty Lou (her aide) was holding her by her hips."

Do you realize, for Gracie, how much coordination that takes standing, even with someone supporting her hips? So cool!

- signed "wrong" at school when she was seated at the table with her friends for a painting activity. "Wrong" can mean that something is wrong with her, like pain. It also can mean "no." On this day (and others since), it meant that something was wrong with the situation. Gracie didn't get a paint shirt put on (because she often protests extra layers over her clothes and then wants to remove everything!) and all of her peers had theirs on. She did not stop signing "wrong" until they figured out that she just wanted a paint shirt like her friends!

- added to her bath time routine. After walking into the bathroom with hand-held assistance, she will climb the two steps of the stool, grab the counter (I will then let go of her) and she will reach over, turn on the light (perhaps several times!) sign, "light on, light off," admire herself in the mirror, brush her teeth (if I set it up for her), turn on and off the water, brush her hair, etc. SO CUTE!!! She will then, with hand-held assistance, carefully search for the step down and make her way to the tub - - all wonderful use of the vision she has and her awareness of her safety and the depth of the steps.


- really turned into a diva! Little Miss LOVES getting dolled up and especially enjoys getting her hair curled. (And, she still won't keep her clothes on! Grr!)