When NOT needing heart surgery is bittersweet

The title surely sounds ridiculous to anyone reading this. Who would ever actually hope for the news that another open heart surgery is needed for their child? When Gracie saw her cardiologist on Wednesday, I did… sort of.    Granted, I don’t really want her to have surgery, but had the answer been that she needed it imminently due to further deteriorated heart function, it would have explained so much about certain things going on with her. Instead, it only further solidified the fact that her deteriorating gross-motor stamina (especially her lack of desire to walk any great distance) has very little cardiac component and is, sadly, more to do with a laundry list of other issues. As for her heart, she would have, if “otherwise typically active,” had a mitral valve replacement several years ago. She was born with an incomplete AV canal and has undergone a total of three open heart surgeries to date. She will need a fourth to replace her mitral valve - - the question is when. Her cardiologist will be presenting her records to the esteemed and well-loved, Dr. Hanley, who will weigh in on the matter.

Back to why I (sort of) hoped that her heart held more answers to the current issues… Gracie’s desire and ability to walk longer distances (longer for her… not actually very long) has decreased tremendously over the last several months. I posted about this a year ago:

"Why doesn't she walk, yet?" is commonly asked, even amongst those "in the know" in the world of CHARGE. I have fielded a bevy of questions on this subject, especially of late. Doctors asking, parents of other kids with various special needs, parents of kids with CHARGE... "Isn't she in therapy?" I can go into the details of her therapy regimen - - it is intensive, both in session and at home - - but the point of all this is that these inquiries (which are sometimes judgments) only remind me that all of her hard work (and ours) has yet to yield the desired result. There are numerous explanations for her delay in this area... she has no semi-circular canals, her vestibular nerve has not been visualized in a CT and is believed to be malformed or missing entirely. She has scoliosis that has affected her hip alignment and her leg lengths. She has mild diplegic cerebral palsy. Her hospitalizations and chronic illnesses have created roadblocks to maintaining strength and stamina. And, still, after all these years, I will not give up... but I also won't pretend that at moments I feel sad, frustrated, deflated and defeated.

Since we moved and I have been establishing her with an entire new team (a total of nine specialists, plus a pediatrician, a dentist, a physical therapist and an occupational therapist), I have repeated the laundry list of reasons that Gracie does not yet walk independently. I know the reasons… and I hear myself when listing them. But, on October 22, 2012, when we had to meet with a doctor at the CCS-MTU (California Children’s Services Medical Therapy Unit) to obtain a prescription to have her wheelchair adjusted, I heard those reasons in a whole different way.

The doctor, a Physiatrist (not included in that list of nine specialists), said to me, “Is she wanting to walk or are you wanting her to walk?” He went on to (very bluntly) say that, by his assessment, it is no surprise that she has had a decline in her ability and desire to walk. His report (wherein he couldn’t be bothered to spell her name correctly) lists those reasons with equal brusqueness… “significant kyphosocoliosis, restricted hip abduction, ankles only extend above neutral by 2 or 3 degrees, feet are windswept to the right, when walking, she does not bring her knee to a neutral position, knee flexion contractures, hamstring contractures…” the list goes on as does his alluding to the fact that the numerous specialists we had seen in the eight plus years prior to him should have followed a different course of treatment for her regarding bracing, etc. (renowned doctors, mind you, with second and third opinions from other renowned doctors).

Nothing like making me feel like 1) we did not seek the right treatment for her (I know that’s not true, but his bite definitely left teeth marks that day)
2) we are forcing something (possibly cruelly forcing) that she is never going to do because of that list in his report and the one I already compiled
3) crying… hard.

I don’t cry in appointments. But that day, I could barely stop the tears from flowing. I sucked it up pretty well considering his lack of bedside manner and the burning hot tears that stung my eyes and tingled my nose. I left with a giant lump in my throat, a broken heart and the sinking, helpless feeling that I had failed my daughter both through treatment that differed from his opinion and by pushing her so hard to accomplish independent walking - - or even walking with a walker independently.

Since that day, we have continued the daily stretching exercises and even tried a different kind of stander, The Magician, for Gracie. The stander, they hoped, would help with stretching. She hated it. We would set the timer for 30 minutes (they wanted 60 twice a day) and she would sob for 30 minutes. It didn’t help that the one we borrowed was too big for her, so she could easily shift herself out of the desired position. Her therapists have made school visits to establish some plans for keeping her active with her walker and transitioning. And, Kaitlyn, her aide, does a phenomenal job of getting Gracie moving (and respecting her limits). With all of this, there still hasn’t been much change.

So, when we headed out to the cardiologist on Wednesday, I was kind of hoping that there would be an obvious cardiac component to her lack of energy. That would be an explanation… one with a surgical solution… and, once past recovery, it would cure the lack of energy and thus, give her back the ability to rebuild strength and stamina. But, Dr. Saba felt strongly that the decrease in Gracie’s activity level is not from any changes in her heart function - - heart function which is limited, of course, but is relatively unchanged in the last couple of years. Thus… bittersweet.

While Gracie’s activity level has decreased, there are many pieces of good (really good… and great) news. She continues to enjoy school - - not so much the work part, but definitely all the fun stuff! Her aide, Kaitlyn, is amazing with her. Gracie… DRUMROLL, please… goes potty on the toilet every single day… often more than once! This is a HUGE milestone for her. She rides (like a speed demon on some days!) an adaptive bicycle on the playground at school and loves it! (This is not a surprise to us, but considering what her team at her old school claimed she would/would not do at school, this is a great step in the right direction!) She is getting her own iPad for school (finally!) and everything will be able to transition to home use on our iPad thru the cloud. And more!! Her feedings - - always the biggest health challenge in her nearly ten years - - are going better than ever (with the exception of her abdominal migraines) and her weight is the highest and most stable it has been in her entire life. 

Instead of dwelling on all those laundry lists of reasons why Gracie isn't yet walking, I am taking that list of good things and placing my focus there. I will continue to believe and hope that Gracie will regain her strength and stamina. I will continue to push her on the days I know she can handle it and respect her limits on the days she makes it clear that she can’t.   And, while I certainly understand the physical and medical conditions that challenge Gracie (and could, quite possibly, permanently limit her), I will not EVER allow the opinion of any doctor destroy our hopes and dreams regarding her potential.

Repeating History

Several years ago, John's mom gave him a picture of himself at 11 months wearing a red, white and blue jersey t-shirt along with the actual shirt. Nearly five years ago, we took pictures of Preston, at eleven months, wearing that shirt and I subsequently put together a shadow box that now hangs in Preston's room.  Last week, we pulled down the shadow box and dressed Gavin in his Daddy's old t-shirt. 

Here is a bit of history being repeated...

John in the middle in January of 1974
Preston on the left in April of 2008
Gavin on the right in January of 2013

The various shots of the boys... nearly five years apart.

Preston, then Gavin...
They look like brothers, for sure, but definitely not that much alike.
Their builds are completely different, too!

Sweet, sweet little face!

Getting so tall and looking less like a baby and more like a toddler... sigh!

Happiness is... "Wicked"

This mama got out... for an entire day... with my mama... in San Francisco.
We rode BART in.
We lunched.
We saw Wicked.
It was a fantastic day!
If you haven't seen it, you should!  It is utterly fabulous!!!

Happiness is... 100 days smarter

Yesterday was the 100th day of school and so, on January 25th, the kids woke up 100 days smarter! 
Their classes celebrated throughout the day and the kids had so much fun!

This sign was at the main entrance and the kids all got to walk through it to enter the campus.
Preston loved this! I was bummed that I didn't grab my phone when we walked in, so I couldn't get a shot of him walking through!

My "100 days" kids and some of their fun 100 stuff.
I didn't get a picture of Gracie in her necklace when I picked her up, so after some serious negotiating, she agreed to wear it again for the photo!
Preston also made a Fruit Loop necklace, but ate it before I picked him up! (not surprising!)
His class was visited by "Zero the Hero," who, according to Preston, was "Cool, but not real."
They did all kinds of projects throughout the day and earlier in the week shared their individual collections of "100 items" that they each brought from home. (We brainstormed and came up with a list of 12 different items.  Preston finally settled on the "Woodsies" craft sticks. His choice... I voted for "Googly Eyes!)  Such a fun day!

Happiness is... 3.31 miles

Today was sunny, breezy and warm - - right around 60 degrees - - which is downright balmy compared to a week ago, or, for that matter, even just a few days ago.  So, I got everyone dressed (minus a jacket layer... yay!), loaded up our double BOB (blankets, a feeding and bolus set for Gracie, water bottles for Preston, Gavin and me, suction, jacket layers just-in-case, diapers and wipes) and we headed out for an afternoon in the Saturday sunshine.  We traveled 3.31 miles, stopping half-way for a snack and about 90 minutes of park time.  It was a happy afternoon.

We took our time and meandered along the way to our favorite mid-walk pit-stop, Willy's.

Preston was our fearless leader, pedaling along while I "wogged" behind him
pushing a considerable load!
(Wogging = walking and jogging)

Preston's bagel smile - - so happy to have a Willy's snack!

Gavin took a 20 minute cat-nap which was perfect timing for our Willy's stop.

Gracie also enjoyed a snack at Willy's... her own cup of whipped cream!

This was our view for the entire first half of our walk.

This park is right next to Willy's.  Gavin timed his siesta perfectly and was wide awake when I parked the stroller on the grass near the play structure.  After Gracie's turn sliding and a quick bolus feed, the rest of the time was spent keeping tabs on Preston while he made friends with every kiddo at the park and chasing Gavin... and keeping everything from the ground out of his mouth!

Gavin (Month 11)

The Gav-man on a mission
You are certainly a determined little guy!  I repeatedly moved you away from the muddy planter that you wanted to explore and you'd make a bee-line for it over and over.

Seriously... you couldn't have posed more perfectly!

This is the best "monthly green chair" picture I could do.
I love your happiness... it is so very contagious!
You've grown so much in 11 months.
(If we say, "WooHoo," you throw your arms up like this!)

Dear Boo-Dee,
I can't believe that you're 11 months. And, I know I say this every month, but this month hit me hard. The truth is, I got all teary a few times today thinking about the fact that you're almost a year. You're our baby and I know you are our last, so it's very bittersweet. I am afraid that I need to get over all of this, though, or I am going to over-smother you and make you into too much of a mama's boy!

Your sweet personality just continues to blossom. You are such a love - - leaning in for kisses, smacking kisses freely at the entire family and almost every time I tell you, "I love you."
You have added a sign approximation for "bath" (and say "bah-bah"). You regularly make the request for one when you are done with dinner.  It's so cute.
You go over to the sliding glass door and bang on it when Toby's outside and then frantically sign "dog" over and over when he greets you on the other side of the glass.

This was taken by Preston as you crawled toward him with me right behind ready to grab your legs if necessary!
You loved your first time crawling through a tunnel at the park (or swimming through your drool!)

You continue to enjoy being outside and get so excited when it's time to pick Preston up from school. When I tell you we are picking up "Bubba" and going to the park, you come unglued with excitement because you know you get to swing when we get to the park. Our routine is pretty set... park for about 50 minutes, then we pick up Gracie. Considering we have to make multiple trips back and forth in the morning and often in the afternoon, you are fairly patient with it all.

You've got an amazing repertoire for sound effects!  Pirates (you grunt), cars (another grunt with a "v" sound at the beginning - - like "vroom" - - it's hilarious!), yells, squeaks and squeals galore.  You are certainly not a passive little man and know how to make yourself heard!  Your newest thing is to scrunch up your entire face and sniff really hard.  You know it makes me laugh and when I start, you crack up, too. 
You love, "This Little Piggy," "Itsy Bitsy Spider," and music of any kind.  In fact, (even though you're not supposed to) you open the cabinet and switch the receiver to net radio or regular radio if nothing is on and sit back and bounce to the music! 

You are adorable when Daddy gets home - - your face lights up and you say "Dah Dah." His face lights up just as much as yours when you do this. Tonight, just before bed, you sat in the playroom with Daddy and played with toys. He called me in to see you in action. "Gavin, where is the picture of the dog?" You handed him our picture card of Sophie. "Gavin, where is Cookie Monster?" You looked around and picked up the stuffed Cookie Monster. "Gavin, where is the dog puzzle piece?" You looked around and out of the five pieces, picked up the dog and then threw it. "Gavin, where is the baby?" You reached over and grabbed the baby doll's head and put your mouth to it, and said, "Bah Bay." Daddy deemed you a genius! :-)  You LOVE books and have a good sign approximation for "book."

You're so cute during our bedtime routine.  After you kiss everyone goodnight, we walk down the hall to your room and you turn off the hall light.  Then, we read a book (you are still completely obsessed with books! YAY!) and you turn the pages.  When we're done, we get up and turn on your music toys and you turn off the light switch and lay your head on my shoulder.  So sweet.  Now... if only nap time went so brilliantly!  Just like your brother did at your age, you seem to think that naps are overrated.  I am lucky if I get one, solid 90 minute nap out of you in a day.  Please, Gavin, try to understand that your naps are just as important for me as they are for you!

So many expressions...

... so much trouble!
As you get into your "monkey-trouble," you remind me more and more of another little Swann boy!

Happy boy at the park with Gracie and Preston

Meal time is so much fun!
You love beans, peas, fruit, Tilapia, chicken, avocado, bread, cheese, ham... pretty much anything that we make for ourselves, you like.  Even the really seasoned stuff!  And you eat a lot. For instance, at lunch, a slice of grain bread (you have a sign approximation for "bread"), two slices of deli meat, a slice of Havarti cheese and a cup of fruit (all small bites, of course!).  You'll even go after my yogurt following all of that! 
 

"Whatchya doin' guys?"
While Preston played on my phone (with his begged-for faux hawk and nasty looking eye from New Year's Eve!) and Gracie looked on patiently waiting her turn, you crawled over not wanting to be left out.

I had so much fun taking pictures of you today and, as a result, I had a hard time narrowing down which pictures to include... not to mention the fact that I am trying, unsuccessfully, to freeze time!  You were hamming it up and, since the big kids were at school, we had ample time to play together.

LOVE this... cutest little squatting tushie ever! (Okay, tied with Preston and Gracie - - even though she's never squatted!)

The birds flying over the houses had you captivated.

What is that...?  A mirror for me to play on?!

You had so much fun playing in the mirror from this vantage point.

"Hey... I know him!"

Love this!
I love them all!  You had such a fun time playing in the mirror and I had so much fun taking your picture.

You and your silly, stuck-out tongue!

You were downright hilarious playing with your drool on the mirror!
(Thanks, T, for the mirror idea... so much fun!)

You go through about four or five bibs a day due to the endless pool of drool pouring from your mouth. You've now decided that spitting it out is a good idea. I hope this passes quickly! You have six teeth and the seventh and eighth will definitely be cut before your birthday.  (In fact, I originally wrote that you had seven teeth because there is one I could see, but when I finally got a good feel in there, I realized it hadn't yet broken through your gums!) In the last week, you started standing up without holding anything for little stretches. The longest so far is about 30 seconds. One night you attempted a step between the couch and daddy and fell (happily) into his arms - - I got it on video on the iPad by sheer luck! It will be interesting to see if you are walking on your birthday. I am in no rush and am, quite honestly, glad you slowed down on this front! Time stops a bit when you don't rush from milestone to milestone!

I will leave my sappy, endless,love-you-the-whole-world closing for next month when you (despite my efforts to freeze time), turn one.

I love you, Boo-Dee.
Mommy

Happiness is... wearing dinner

We are thankful that Gavin is turning into a great little (well, BIG, actually!) eater.  He loves food and wants to be very independent.  (That's code for he won't allow but a bite or two via the spoon fed route.)

He eats all kinds of things already and it's pretty nice to just feed him what the rest of us are eating. On tonight's menu - - two varieties of Enchilada Casserole - - one beef with red sauce, black beans, olives and zucchini and the other was shredded rotisserie chicken with a verde sauce and black beans.  Gavin scarfed down black beans from both casseroles (spicy sauces and all), ate small bites of chicken, olives, etc.   He grubbed!

He happily squealed all through dinner... it was pretty darn tasty!
He kept signing "more" over and over and saying, "muh" as he shoveled it in. It was everywhere - - so much so that he had plenty of leftovers saved all over his head, face and hands!
 

Nothing like a good dinner followed by a yummy cookie.
(He even has a sign approximation forming for cookie!)
I wiped his tray down first because a cookie covered in red and verde sauce is just gross!

"Seriously, mama? The camera? I am busy with my cookie!"

Apparently we didn't serve him enough!
He removed his sock and promptly helped himself to a side of toes!
(Toby took off with his sock and two seconds later, Gavin removed the other one and said, "Dah" and looked for him! Silly boy!)

Happiness is... the ranch

"The Ranch" is beautiful property that has been in John's mom's side of the family for many generations.  The 640 acres sits in the Tassajara Valley and backs up to state land at the base of Mt. Diablo.  With the exception of just a few structures, grazing cattle and the various native wildlife (coyotes, deer, wild boars, mountain lions, etc.) this land is relatively untouched and is, especially now when everything is turning green again, truly breathtaking and serene.

John has countless wonderful memories of being on the ranch as a boy and, now that we are nearby again, he is enjoying sharing it with Preston and seeing it through his eyes and can't wait to do the same with Gavin.  John is excited that Preston is now old enough to make memories and find happiness there, too. While today was not Preston's first time at the ranch, it was the first time that John drove him into the backfield and showed him some amazing views.

When they got home this evening, Preston handed me a fossilized sea shell that he found and told me he was certain he saw a fossil of a dinosaur bone, too! He chatted on and on about feeding Grandma and Grandpa T's horses, how Scooter (the horse) counted using his hoof after Preston fed him a carrot, how he gave Scooter a kiss on his nose... you get the idea.  Happy, <i>happy</i> boy... happy daddy.

This shot was actually taken in May when everything is green!

Giddy to have taken the Jeep off-road with his Daddy

Love the way the light changed as the sun set

A million different rock outcroppings to climb!

Our boy... with his Daddy, driving the Jeep, on the ranch... happiness.

Happiness is... a DVR

... and the return of regular programming.  It makes me happy that my DVR records hours and hours of television (some good, some trash!) for me and I don't have to set a VCR and make sure I am not recording over someone else's prized program!  (Remember those days?!)  

Our house is quiet (but for the snoring) and I have a date with the TV that includes uninterrupted viewing of some of my shows.  Happiness.

Happiness is... finding it in the simple things

Today wasn't a spectacular day, nor was it awful.  It was just a typical, busy Thursday in which I found happiness in the following, simple things:

- I did not have to struggle with my five (and a half) year-old son to stay on task and get ready in a timely fashion this morning.  On the way to school, I thanked him for his good behavior.  His reply was that he is going to do that every day.  I am not holding my breath, but the eagerness with which he made his claim made me smile.

- I managed to accomplish three errands that had been nagging me on my to-do list (all before 11am).

- Gavin started standing (without holding anything) for about six seconds (much more than the split-second he's been doing!) and was very proud of himself.

- I got four loads of laundry done today (which means I can slack one day this weekend!) and by done I mean washed, dried and put away.

- John had a training day today, so instead of getting home just before the kids go to bed, he was home before we returned from picking Gracie up from school.  :-)

- Gracie had another good day at school... four in a row.  Her highlight today was riding (speed racing!) the adaptive bicycle around the playground.  She rode it yesterday, too, for 25 straight minutes.  Girlie told me that a little girl in general ed, who always shows such concern for Gracie when she is in her wheelchair out on the playground, saw her on the bike and said, "She's all better!"  So sweet! 

- John went grocery shopping.  It is a chore that he typically handles, with the exception of quick trips for a handful of items, but it always makes me happy that he does it.  I am not a fan of grocery shopping... at least not with kids in tow.

-  Preston didn't battle me too hard on homework ("It's so BORING, mama.") and it was done long before John returned from the store. 

- Everyone enjoyed fresh citrus after dinner.  (And we all missed the orange tree we had in our backyard down south.)

- All three kids had baths (the boys together, which is fun!) and, in order from youngest to oldest, were asleep by: 7:45, 8:30 and 9:00.

- My kitchen is clean (I loathe waking up to a mess in the kitchen!)

- I will be in bed (and hopefully asleep) by 10:00 for the second time this week.  (How long I am able to remain there is another matter.)