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To the outsider looking in, these pictures might look like an ordinary family trip to Costco. And, while we regularly frequent Costco, I assure you, there was nothing ordinary about our shopping experience last Saturday. You see, our kids have never, ever sat in a shopping cart together!


I'm not sure who had more fun! While the kids were just plain silly playing with each other (Gracie especially loved playing with Preston's hair!), John and I were giddy with happiness watching them experience something others can so easily take for granted.


Although Gracie's had the core strength and balance for years to sit in a cart like this, she has always preferred being in her chair. When we've tried the cart, she has panicked and signed "up" or wanted to put her head down for stability and security. Plus, until she was about four and a half, most outings (aside from walks to the park), were terrifying for Gracie, causing a true sensory overload. Between all of those things and her poor health over the last year, there hadn't been a good opportunity to give it another shot... until Saturday. Suffice it to say that I have never enjoyed a crowded Saturday at Costco more in my life!

Trick-or-Treat!!!

One of only three pictures of both kids with all parts of their costumes on!!
(And, no... Gracie wasn't lovin' the hat!)

"To Infinity and Beyond!!!
Preston, as Buzz Lightyear, taken last Saturday before a friend's costume party.(He wasn't as cooperative for pictures on Halloween... we had to beg!)

Jessie, aka Gracie, was much happier without her hat!

The idea behind Gracie's "chair" costume - - a scene from Toy Story 3

Seriously love that I captured this - - it speaks volumes about what she thought of wearing the hat!
(Poor sweetie pie was sound asleep when I woke her up to get her costume on.
In all fairness, she was trooper! She didn't want anything to do with the party our neighbor's had, so she and I stayed outside and walked around while very kind friends kept an eye on Buzz until Daddy joined us.)

There definitely was a theme amongst many of the kids in the 'hood!


The tips of Buzz's wings lit up and flashed! They were so cool... and made it much easier to see him, as he was running around like a crazy child.
He wanted to be the first one at the door every time. Not the best way to make friends on Halloween... sigh.

Buzz, Jessie and Jessie!
Jessie, Jessie and Buzz!

Pa's Pumpkin Patch

On Tuesday afternoon, we took the kids to "Pa's Pumpkin Patch" in Long Beach. Aside from sitting in her chair for about 90 minutes at a birthday party last Saturday, it was Gracie's first big outing since being discharged from the hospital. It's not too far from our house... and is on the corner of Pacific Coast Highway and 2nd Street... so it is a "patch" of parking lot! But, the kids loved it. And, because of that, so did we! It is strange, though, to hear traffic from PCH and literally smell the salt water while picking out a pumpkin!

When Gracie was discharged last Thursday, they said she could resume all normal activity. I chose to keep her home, let her build some strength and, as I mentioned in a previous post, allowed myself to get us into a routine with her new marathon of treatments. As many of you know from facebook, Gracie went back to school Wednesday, had a good day and then spiked a low-grade fever that evening. During the night, her fever persisted and her secretions increased with a vengeance. The likelihood that this development is "bacterial" in nature is slim... she is on two heavy-duty, broad spectrum antibiotics. Her labs taken on Tuesday afternoon looked improved from discharge, so that is also a good sign, however, the labs weren't ordered to look for any fungal issues (like the yeast she developed in her PICC line over the summer) which are always a possibility when on antibiotics so much and for so long. Thankfully, we have a scheduled appointment with Pulmonology (our third appointment of the week) today (Friday), so we can get a better handle on what the deal is... I hope.

We almost decided not to go to the pumpkin patch on Tuesday - - we were going to wait until Thursday. I'm so very glad that we seized the moment and enjoyed that very small space between.

I took a ridiculous amount of pictures... and so many turned out cute that I had a hard time choosing just a few for the blog. So... enjoy the slideshow!

I have to mention a few highlights that aren't captured in photos (so I don't forget!)...

- Gracie, upon seeing the sea of pumpkins as we entered the gate, signed, independently... "Jack-o-lantern." And, while they were still very much "pumpkins," I was floored and so very proud. We had told her we were going to the pumpkin patch, we had never once signed "Jack-o-lantern."

- Preston, was terrified of the man who ran the little train ride... he had a long, Santa-like beard, with a spider dangling from it. Preston could barely look at him to say thank you for the ride. Let's just hope, for the sake of the Christmas tree patrons, he removes is eight-legged friend come November.

- Gracie was signing up a storm in the petting zoo, mostly prompted, but after we'd been in there a bit, several were unprompted and correct!

- Preston loved the House of Mirrors. LOVED. Gracie and I stayed outside and I heard this terrifying "thud," which I thought for sure was going to be followed by crying and a bloody nose, but instead, the most infectious laughter erupted. John and Preston rounded the corner inside and I could see them... both of my boys, giggling like crazy. Then, bam! It happened again. More giggling! When they finally made it out, we all cheered for joy (for the fun and no broken noses!) and Preston wanted to go right back in!

The Vest

Gracie came home from CHOC late Thursday afternoon. Friday, the 22nd, was a buzz of supply deliveries, new equipment set ups and general household chores which seem to multiply like fertile little rabbits while she's inpatient. Amongst the new equipment/supplies in our small, efficient home hospital, is "The Vest" - - a fabulous (if your child likes it - - which both of mine do... more on that below) airway clearance machine that literally vibrates the mucous right out of the lungs (or at least loosens it enough to be coughed or suctioned out).

Used every four hours while she was in the hospital, The Vest was very effective. The home treatment regimen is essentially the same as at the hospital, and thus, has me pretty overwhelmed. Gracie has so many treatments per day that it's taken me a few days to get a handle on a schedule that I could manage and make sure she tolerated. Her current regimen entails using the vest while taking a nebulizer treatment of Xopenex & Mucomyst. She stays on the vest for another neb treatment of Dnase, comes off the vest and gets a treatment of Pulmicort and then another of Tobi - - TWICE a day. In between these "marathon" treatments, she gets additional vest treatments with Xopenex every four hours. All of this, coupled with feedings, her regular meds and her added two-week regimen of both Cipro and Zyvox (both of which yield lovely diapers at least every hour) and you have a pretty busy kiddo (and mama) who hasn't even left the house! Add in three doctor appointments this week, a lab draw this week and three appointments next week and, well, you get the idea! It's worth it, though.

The Vest, it turns out, could be the big hero for Gracie, given all the bugs she tends to regularly host, plus the ones she is so easily picking up. Because her sinuses are chronic and she doesn't swallow, the bacteria that she harbors in those wide open sinuses easily travels to her lungs when she micro-aspirates. The hope is that the use of the vest will keep things broken up and moving out. Thankfully, she really, really loves it... all that input is like a dream for her! She happily signs for it (almost on schedule) by patting her chest (which is her sign for the vest) and then signs "trach medicine." It's quite possible this might trump her love for baths!

Preston, who did not visit her in the hospital this time, was fascinated by the new "shaky shake" machine that was delivered and wanted to know what it was all about. I explained to him that it is definitely not a toy, but also wanted him to get an idea what it was like for Gracie. Little did I know that videoing his three minute experiment would provide me with hours of enjoyment. John and I can't help but giggle when we watch him in this. I didn't include the whole thing... I think it's mostly funny to us because we're his parents! In any case, hope this little clip brings you a chuckle, too!

Angels Playground - - a fun day in the "space between"

During the last "space between," I took the kids to Angels Playground in Costa Mesa. Angels Playground is a wonderful, fully accessible park with fabulous equipment, sunshades and ramps all the way up the large jungle gym structure.

Saturday, October 9th, was a beautiful day - - the weather was warm, but not too hot, and it seemed a perfect opportunity to pack a picnic, load the car and make the drive fifteen miles south to check out the park for the first time. We had a fantastic time, so much so that we ended up staying over four hours! The park itself is huge... lots of grass, trees, hills, and water features including a small waterfall and duck pond.

A gentle breeze and abundant shade kept Gracie extra comfortable while she wheeled herself around the playground, checking out each area like an investigator. Preston, once he accepted the fact that she needed to do things at her own pace, found a boy his age (and a six year-old girl, no surprise!) to play with. He ran all around, frequently checking in with his sister, stopping to hang out for a moment or two before taking off again. The set-up was nice, as I could easily stay with Gracie and help her control her chair, while at the same time, see where Preston was. We will definitely be going back!

PICU again... Pneumonia again

Unfortunately, Gracie is back in the PICU, having been admitted late Sunday night/early Monday morning. She got sick on Thursday night with what I assumed to be nasopharyngitis and, despite trying to ride it out at home in our "makeshift hospital," she continued to get worse. I took her to the ER on Sunday night figuring that she had developed pneumonia... which she had.

She had a rough first day in the hospital, as she was very agitated and working so hard to breathe. She was inconsolable, combative and fixated on getting out of the bed and room. Thankfully, the "alien" who overtook my daughter for about ten hours on Monday has not resurfaced. She is now far calmer and more comfortable, though certainly still breathing fast. Her chest Xray looks the same today as it did Sunday in the ER, but her CRP has dropped from 45 to 35 (normal is 1.0 or less) and that's good news, as the drop is a sign that she is responding well to the antibiotic cocktail that Infectious Diseases has ordered.

The space between

Taken September 30th... a good day.

If there is one thing that is certain when it comes to Gracie's health, it's that things can turn on a dime. We've learned that we can't count on this hour being the same as the next, we can't make plans - - even carefully laid ones - - without them often being shifted to "Plan B" or even "Plan C." We cherish the quickly moving moments, hours and days that she feels well and we nurse her through the moments, hours and days when she doesn't - - those days that our hearts are heavy and time seems to stand so very still.

The pattern is nothing new, so you'd think I'd be fully accustomed to it. But, during the trauma of the summer and 42 more days in the hospital, I guess I somehow allowed myself to hope the pattern would change - - that maybe, after all she'd been through, the reward would be more stability for my chronically ill daughter. That is not the case.

Since her discharge in August, she's had three ear/sinus infections and two cycles of abdominal migraines. The most recent abdominal migraine started on Sunday and lasted through Thursday; the sinus symptoms seemed to have started Saturday... but it's really so hard, with these repeated problems, to tell what is actually coming first. Are the sinus symptoms a result of the migraine brewing or is the migraine a result of the sinus/ear pain? Or, are the sinus symptoms just environmental allergies flaring up (because everyone else in the family was irritated by their allergies)? I am not certain we will ever know. And this time, we had another factor involved because of an attempt to change formula.

At her GI visit two weeks ago, the doc was happy with her tolerance, but not happy that she is losing weight... we are back to that pattern, too. Only this time, she is not losing nearly the calories as she was before. Her bad days now yield more calories than her worst days before surgery. Because of the weight loss, the doctor upped her calorie requirement, figuring that being sick so much is messing with her metabolism. He also wanted me to change her formula. I was not happy with that idea and I expressed my concerns. He heard me, but still wanted to try - - his hope was that all previous issues were solely related to the complications of her her stomach and liver being so tightly fused, the hernia, etc. He wanted me to bump her calories and once that was successful, try a whole day on the new formula.

She easily handled the addition of the calories and once she was successfully there for a week, I added in the other formula. I only did half and half... for one feeding... so she only had a total of three ounces of the new formula. One ounce into the second feeding, she was white as a ghost, clammy, had beads of sweat under her eyes, was gagging and writhing around in agony. I cut the feeding pump off and she proceeded to have crazy, major diarrhea about twelve (not exaggerating) times in a four hour period... straight-out-the-diaper-no-matter-how-tight-it-was kind of diarrhea. Poor sweet girl... and poor mama for cleaning it up and dealing with the guilt of trying the formula when I knew the doctor's logic was not at all logical.

We are still working our way back to full feedings, but she is perky again and I'm grateful. She went to school for a few hours on Thursday and Friday. Hopefully she can hold onto this space for a while - - feel well and do the things she loves... go to school and therapy, see her friends, play outside. I'm amazed, as always, by her resolve. She passes through those painful, dark places all too frequently and comes out the other side with her spirit seemingly unscathed. I, on the other hand, am not unscathed and try to recover from the heartbreak and exhaustion of those lows. As I shared with a dear friend the other day, I tell myself to exhale, for lately I seem to be spending a lot of time holding my breath, knowing that the next downturn is looming around the corner. Instead of focusing my energy and worry there, I try to capitalize on the days Gracie feels well and fully live in the space between.

More from the impromptu cell-phone photo shoot in front of the house... so cute and sassy in her skirt from the Clayton family!

I ♥ this picture... such a real moment of conversation between my sweet peas!

'S' is for...

Sip


Sit
Last week, Gracie started requesting to sit in her red chair after school - - an indication that she's feeling stronger and wanting to pull herself up to stand, which, up until last week, she hadn't really done much of this since being discharged from the hospital.

'S' is also for silly toes... check out what Gracie's doing with her feet!

Signing Time
A favorite "wind-down" after school is watching a "Signing Time" DVD or her favorite signing episodes of "Blue's Clues."

Stand
Deja Vu!
On the left: February 2008
On the right: September 2010
They're both taller, especially Preston. They both have more hair, especially Gracie on the back of her head! And, they both are wearing fewer clothes!

Since Gracie started pulling herself to a stand and trying more physically last week, I called to set up an evaluation appointment to resume PT and OT services. We had the evaluation this week and will hopefully resume her twice weekly schedule in the next couple of weeks. Next, I'll work on getting her VitalStim resumed.

Sleep
After a birthday party last Saturday and what I fondly refer to as
"Bounce House Coma"
Gracie was out first (her eyes are open because she can't close them!) and Preston was only behind her by about five minutes!
And, yes, 'S' is also for strip... Gracie no longer wears a shirt in the car. If we put one on her, she will have it off in a flash! And, if she can't get it all the way off, she is hysterical until I pull over and help her. Thank goodness for my limo-tinted rear windows!!

'S' is for... Sweet (mostly) things he says

More from the mouth of Preston...

Wednesday, August 11
While Gracie was in surgery, Preston told Nana he wanted to send mama a text. Using Nana's phone, he texted all kinds of gibberish with furiously fast thumbs. When Nana asked him to read it, he said, "Dear Jesus, my mommy."

Late that night, he asked to send another text that was so many characters it was multiple messages. Translated, it read, "Dear Jesus, I love you. From me, Jonah and Ella. (Jonah and Ella are twins and his good friends from school.)

Before Nana left for Georgia...
Preston went potty. Then Nana said she was going to go. He told her to go standing up like him. She explained that she can't go like that because she isn't a boy. He insisted, "Yes you can, Nana. I will show you how..." He has since also offered to help me do the same!

Monday, August 16
John and Preston walked in the front door and the mail had been dropped through the door mail slot and was lying all over the floor in the entryway. Preston picked up the mail and yelled, "Daddy I got mail. To Preston, I love you, from Jesus!"

August 23, 2010
Two days after Gracie was discharged, we set up the pools for the kids in the backyard and all four of us played... splashing, soaking and just hanging out. Gracie, Preston and I were in the bigger pool and John was getting ready to take a picture. Preston said, "We are a family again."
Sigh.

August 26, 2010
Preston and I were doing chores in the backyard. He saw a dandelion, picked it, blew it all over the place and went on his merry way. A moment later, I spotted another one (yes, we have a lot of weeds within our grass...) and pointed it out to him. He picked it and said, "I wish Gracie will feel better," and then blew it all over the place.
Be still my heart.

September 18, 2010
I could hear Preston laughing in the family room where he was playing and Gracie was watching her favorite signing episode of "Blue's Clues." I peeked over the counter to find him half sitting-half straddling her.
I said, "Preston, what are you doing?"
"I'm tooting on Gracie!" he giddily exclaimed.
"Preston, that's yucky... and you might hurt her."
To which he replied, "She likes it, Mama and I'm being careful."
And so the brotherly bodily function torture begins...

September 26, 2010
I took Preston to a birthday party... Gracie did not come with us. Preston was having a blast while I looked on, all the while feeling like I was missing a limb without my girl there to look after. Anyway, Preston slid down the giant slide, jumped down, and as he started to go back up the stairs, he suddenly turned around to me and said, "Wait, I have to go check Gracie." I had to remind him that she wasn't with us. (This was a good thing... as much as she loves bounce houses, she would have been trampled at this party as there wasn't a "calm" inch of bouncing space in the place!)

The day before we were at another birthday party at a different bounce house place and he periodically ran back to us to see that she, too, was having fun. "Checking her" means a variety of things for him... is she happy, does she need help, does she need to be cleaned up from coughing, does she have her diaper on, does she need a toy. I love that he loves her that much. I love that it is second nature to him to want to "check her." I love that he knows his sister is special and needs extra help and that he doesn't see her as anything other than his sister.

'S' is for... School Bus

Gracie is riding the school bus again!

On Thursday afternoon, Gracie finally got her first school bus ride of the year. She was really happy (especially to see her bus aide, Kathryn), though I think a bit in shock! It has, afterall, been a long time since she's been on the bus. Between changes within the district regarding transportation, Gracie's multiple appointments, her overall health at the beginning of the school year and some issues with plain old logistics, I have been driving her.

She rode Thursday and Friday afternoon, which allowed us to work out some significant kinks (like they forgot the carseat and they put her on a bus without air conditioning, the later caused her to overheat and get sick Friday afternoon... grrr). Starting in October, she will ride in the afternoons four days a week and hopefully her mornings will be worked out soon... without any additional kinks!