Happy 4th... and an update!

Happy 4th of July! We hope you all had a safe and fun holiday!
Please don't fall out of your chair when you see that there is an update here!
I know... it's shocking! Life has been so busy... so busy in fact, I am not sure where to begin. Here is a quick (well... quick for me!) overview - - I can't believe it's been nearly two months since I last posted. Being a "single" parent has kept me just shy of a constant tailspin!

John: He is hanging in there at the academy. Being the "old guy" has had it's share of challenges - - not so much physically, but because he's been out of practice academically. Study habits and techniques are slowly starting to re-form. (Since they cram 2 1/2 years of curriculum hours into 6 months, I think it would prove challenging for most people.) Physically he is doing well... keeping up with the "young bucks" and I suspect surprising them that "grandpa" can actually keep up with them. As I predicted when he started 10 weeks ago, he has morphed back into his "twenty something" physique and looks quite a bit like he did when we met 12 years ago... hubba hubba!

Gracie: She is doing well overall... "well" is always a qualified statement with her. She had been on major house arrest during the horrible smoke conditions... and missed going outside so much. We are still trying to manage all of her GI issues and keep her tummy happy and hold the migraine cycles at bay - - as a result, she has had no weight gain and we are barely maintaining. Despite this, she has been gaining stamina and strength with her use of the gait trainer and can now do over eight laps around the main living areas of our home... pretty impressive considering we were stuck at three-four laps just a couple of months ago! She seems to be more willing to try new things without as much protest - - so long as she's feeling real well and tolerating the upright position. Check out these photos of her just "hangin' out" on Preston's tricycle!

Not such good news... we saw an ENT at Stanford whom I really liked, but whom delivered a pretty devastating reality. Unless Gracie can regain a functional swallow (which she appeared to have prior to her trach - - although it was probably borderline), she will not be able to be decannulated (get her trach out). She produces an excessive amount of saliva and doesn't swallow it... this affects the amount of suctioning required, explains a large part of her inability to tolerate a Passy Muir valve (speaking valve) and was not the news (obviously) that I was hoping for. She scoped Gracie right there in the office (my girl was a superstar and handled it better than most adults would) by going through her nose to look down at her vocal cords to check function. It was quite sobering... as she made the turn from her nose down to the back of her throat, it looked like a bubble bath - - just a ton of saliva and no vocal cords in sight. The secretions were so tenacious, they blocked any view of the cords - - a sign that her vocal cords are not functioning at their optimum level as they would naturally protect her airway and help keep some of the saliva below that area. There is a therapy (VitalStim) that uses electric stimulation to help train the muscles to swallow - - unfortunately, this is not an option for Miss Gracie because she has a pacemaker. We have previously tried Botox in her salivary glands to minimize her production of saliva, but that failed. We will continue to look for alternative treatment and ways to manage her saliva... and in the meantime, focus on all of the good things that are happening with her!

Preston: Oh my... he's a busy boy! From the moment he wakes up until the minute his eyes finally close... it's go, go, go! He is my diet/exercise plan!!! I could make a fortune "renting him out" as a workout plan for people! He's already signing (many are approximations, of course) about 30 signs and has a handful of oral words now, too. He always signs what he's saying which is so cute! His first word was "ball" just a couple of days after his 1st birthday (not counting his early babbling of "Dada" which is now said with great intent). He's since added "Papa," "apple," "hot," and "wow." ("Wow" was picked up during the diving and gymnastic Olympic Trials because Mommy kept saying it while watching the competitions on TV!) He is obsessed with balls & sports, motorcycles and nice cars (I have no idea how he knows a clunker from a sleek ride, but he does!) - - it's a strong genetic link to his daddy! He loves going to the park, especially our new water parks that have all kinds of sprinkler features! He climbs EVERYTHING and I am convinced is trying to see how many new gray hairs and near heart attacks he can give me in a day!

We discovered his obsessive love of watermelon today, fittingly on the Fourth of July- - check him out!

Happy 1st Birthday, Preston James

Dear Sweet Son,

It's so hard for me to believe that a whole year has passed since you entered this world and changed our lives in so many wonderful ways. I constantly tell people that if we had known how easily you'd blend into our family, we'd have had you sooner... but then, you wouldn't be you, would you!?

Someday you will learn about the concept of nature vs. nurture and the great debate that surrounds what influences a person's character more. What I can tell you about that is this... while those who love you nurture and teach you as much as we can, the nature of who you are and how you are is already well-established. You are a very special boy and you amaze me, Preston. Perhaps that's simply because I am your mommy and I am supposed to feel that way. But, I have a feeling it's because you are an amazing little guy with a kind heart and bubbly little personality! So sweet-natured and friendly, you give such love and delight in making others smile and laugh. You offer up the most delicious kisses & hugs and are especially sensitive and loving toward your sister (most of the time!). You have made me a morning person... because no matter how tired I am when you wake-up, I can't wait to see your sweet, smiling face when I open your door to find you eagerly standing in your crib. And, I think you are just as excited to see whether it's Daddy or me who is coming to get you!

You have changed so much in 12 months... it's really hard to fathom. Busy as can be and ALL boy, but calm in a sense, too. You love your books and will sit through a few and then will jump up to do something else. You are a quick learner and incredibly inquisitive. And though you love to test limits (as you should) you are a good boy and mind really well for such a little guy!

At your one year birthday, you have six teeth with two more trying to poke through, you have eleven signs and are officially a walker! You love dogs - - especially your dog, Sophie, waving hello and calling out to those who pass by, taking baths, exploring the backyard and getting the mail. (You "ask" to go get it by pointing at the spot on the counter where the key is, point to the door and then across the street where the mailboxes are. You help put the key in the hole and open the box and then carry the key back to the house and put the it back when we're done... clapping for joy at the fact that you've accomplished this task! It is quite amusing to watch!) You LOVE music and will dance and "sing" the moment you hear something you like. Thankfully, in the car you accept a break from your kids' music and will eagerly sing along to Rob Thomas and Matchbox Twenty with Mommy!

You delight in each experience, whether it's part of our routine or something new and thus, I love seeing the world through your eyes. You remind me to "stop and smell the roses" and take in moments. As I am with your sister, I feel honored, proud and oh-so humbled to be your Mommy.

Happy 1st Birthday, Bubby.
I love you with all my heart,

Mommy

12 months of Preston

Happy 1st Birthday, Reuben!

Please join us in wishing Reuben Jack Dodd a very happy 1st birthday!

We were lucky to meet his parents, Catherine and Jason, at the CHARGE Syndrome Conference last July. In September, we were able to visit with them and meet Reuben as he bravely fought for his life at LA Children's Hospital. They are an amazing family... and you can see just how inspiring little Reuben is if you check out his beautiful blog - - truly a work of art created by his devoted Mama! http://www.reubenjackdodd.blogspot.com/

Congratulations, Reuben on this HUGE milestone... we can't wait to see what surprises you have in store for us in your second year!

With love,

Kristi, John, Gracie and Preston

Good Luck, John!

On Monday John started his 27 weeks at the California Highway Patrol Academy.
This is a big career change and is one that was several years in the making. I am so proud of him... and equally excited for him.
Since we met (12 years ago) John has spoken of a career in this field. For various reasons, the timing wasn't right and once Gracie was born, many plans changed. We did what made the most sense for our family - - John worked part-time (to keep his fabulous union health benefits) and I worked full-time to financially support our family. It worked really well for us on many levels, and while we were always grateful for the great insurance he had and the flexibility of his employer (and mine!), John was never satisfied professionally. During the last few years, he looked into other careers that seemed interesting and appeared to be an easier transition for our family, but he always came back to law enforcement - - specifically, the CHP.
Timing is everything and interestingly enough, several things happened at once to align John's stars - - the biggest of which were that Gracie was approaching the maximum dollar amount through John's policy and he was approaching the maximum age to apply for the CHP. If Gracie's insurance was running out, then there was nothing really holding him back from making the change... so he went for it. The interview process (just to be offered a spot at the Academy) is rigorous and takes many months. It was, obviously, a big decision for our family - - one that was carefully thought out. The Academy is a 27 week, live-in, military based program. He gets "liberty" on the weekends and Wednesday evenings (not all). Luckily, the only academy training center in the state is in West Sacramento, so he's close enough to come home during those liberties (provided he doesn't have too much studying to do). Two and a half years of curriculum are squeezed into that time. It's intense to say the least. But, after all things were considered, the right decision for John and our family was for him to pursue his dreams. It's his turn... his time... and he deserves it.
So, I have stopped working full-time and my "PIC" (Partner in "Crime", Partner in Children, Partner in Chores, etc.) is GONE! I do have help... my mom and Jim are always a phone-call away (as they've always been) and Judy, Gracie's nurse, is here during the day (until she moves away in July).
And, quite fitting... as John dove in to the rigors of Academy life on Monday morning, I dove in to life without my "PIC" by driving down to Stanford to take Gracie to a GI appointment. Nana came with us and Papa stayed home to look after Preston... thank goodness for both of them!
* * * * * * * * * * * * * * * * * * * * * * * *
The photo was taken as he rushed out the door Monday.
I will be keeping a little journal of photos of John during this time... as with the intense physical training they do, I am sure that he will be morphing back into a "twenty-something" - ha!

Like Father, Like Son

This is John at 11 months...

And this is Preston at 11 months... in Daddy's shirt!

Here are some more shots trying to get a "matched pose..." which was impossible!

Preston the "Present"

Not to be outdone on his sister's birthday, Preston tries to steal Gracie's show
by crawling into one of her giftbags! John promptly put the bag upright and out emerged the little gift below!

In case you were wondering... yes, he knows he's a funny little guy!

This had Gracie grinning up a storm!

Peek-a-boo!

Gracie's Birthday Evening

After her big day and a somewhat rough afternoon, our birthday girl rallied for a little party time at home. We opened gifts, hung out and then sang and signed all over again... this time with a very special cake made by her sweet Daddy. :-)

The crown had a repeat performance at home!

"Wow, Daddy! You made that just for me?!"

Daddy helped with this wish... I'll bet it was a good one! :)

Yep... She definitely likes playing with food better at home
than at school!

What a BIG day for our BIG girl of FIVE!!!

A school party for Gracie

On her actual Birthday, Gracie was invited to the Deaf and Hard of Hearing Preschool (DHOH Preschool) to attend class and have a birthday party. (This is the same class we've been visiting and it's taught by the DHOH teacher who comes to our home to work with Gracie.)
This day was a big milestone for her- - and a dream come true for John and me as her parents. There are so many "regular" things that we dream of for her... and this day was a big one... a birthday party at school with little friends, cupcakes and oodles of attention all for her.

Check out her crown made by her teacher
and teacher's assistant! :-)

Her "crowning moment" as everyone signed and sang "Happy
Birthday."

Mommy helped make a wish and blow out candles.

Happy Birthday, Gracie!!! :-) Soak up the attention,
girlie... it's all about YOU!

Um... can someone help me out here, please?!

"The chocolate is pretty good, but I think I am done... will
you be signing/singing to me again? I liked that part best! "

It was truly fantastic... and I still get emotional thinking about it. It's the very first real party she's ever had, as her health and stress tolerance have just not made it possible until now. Granted, she had a pretty significant recovery time from her big morning, but she got to have the big morning and that's all we hoped for!

Happy 5th Birthday, Gracie Girl!

Happy Birthday, Sweet Girl!

You are a big girl of FIVE now!

We are so proud of you!

With all our love,

Mommy, Daddy and Preston

....................................................................

Dearest Sweet Gracelyn,

I just can't believe that our Gracie Girl is five years old today. In some ways it seems like just yesterday that Daddy and I were a few minutes late to my induction appointment in order to shamelessly catch the last few minutes of American Idol!

Your birth certainly didn't go as planned... I was induced because your due date of April 2nd passed by and soon April 15th was upon us and you were showing no signs of wanting to leave your cozy place inside me! After hours and hours of labor, you were in distress and I had a fever, so it was off to the operating room for a c-section... and then you were here.

From the moment you entered this world and struggled to take your first breath, you defined "fighter" and continue to do so. Daddy went with you to the nursery and as I went off to recovery, I could see the worry in the faces of all our family.

I only caught a glimpse of you for a quick moment as the doctors worked feverishly to help you breath, so when Daddy came into the recovery room over an hour later, I asked him, "What does she look like?" While I was overcome with fear and sadness for the struggles you were facing and imagining tubes and machines helping you, your amazing Daddy said only this, "She looks like our daughter - - she is beautiful."

The next several hours, days and weeks were terrifying, overwhelming and exhausting - - constantly learning more about what this thing called CHARGE Syndrome was and how you were affected by it. The one thing that gave us peace was sitting in the NICU and looking into your beautiful blue eyes and seeing only love looking back. It's that same love, only now grown larger than life, that I see when I look into your eyes now, five years later.

Your struggles have been too many... your fights harder than many others... there have been more times than I care to remember that we feared we'd never see today. But it seems you, my brave girl, have never questioned those fights, and instead have only fought them.

You have never once ceased to amaze Daddy and me. Some say it's a testament to us as your parents that you have the spirit and disposition you do given all that you've been through... but we know that is just who you are. You came into this world like that and we've just been here to bear witness to the amazing things that you've accomplished in spite of all that you've endured.

You are, without question, the bravest, strongest and most resilient person I know. And, even though you are just five years old, you undoubtedly know more about "fight" and perseverance than people who have lived 80 years.

My card to you today reads, "Ask me what beauty is, and I will show you my daughter."
There are not words to describe how privileged, honored and humbled I am to be your mommy and to bear witness to the miracles that happen through you, around you and because of you. You are an inspiration, a teacher and a blessing - and I will forever wonder how I got so lucky to be your mommy.
Happy Birthday, Gracelyn Marie.
I love you with all my heart,
Mommy

Finally... results from procedures on 3/28... another LONG post!

Gracie had a Colonoscopy, EGD and Bronchosopy on 3/28.
That same day we received preliminary results - - the doctors' observations - - and then had to wait for all of the lab results to obtain answers. As some of you know, due to the preliminary findings that day, we chose not to update the blog until we had definitive answers... we were worried, scared and given all the symptoms she's been having for such a long time, we felt that putting partial info on our blog would only tend to worry others and/or encourage a Google search that would then incite more worry. We just needed to wait it out privately.
Her GI doc found a very irritated stomach and bowel - - which we've known about for a long while now. Gracie has active gastritis (inflammation of the gastric mucosa of the stomach) and small bowel lymphoid hyperplasia (swollen lymph nodes throughout her entire small bowel). In fact, what appeared in a previous study to be a large polyp was, in fact, a very inflamed lymph node. Several biopsies were done and we are happy to report that the tissues biopsied do NOT have any abnormal cells - - no intestinal lymphoma. This is WONDERFUL news. Although we knew in our hearts that this wasn't her diagnosis, it was hard to ignore the similarity in the symptoms and we only grew more nervous as time went on and we waited.
We still have no real answers as to the cause, but are clearly thrilled to have ruled out the one thing that loomed in our minds. We will be changing her feedings to an amino acid based formula that we must create from a pure amino acid base... I will learn more on Monday. She is already on the purest amino-acid based powder formula on the market, but it has corn product, which may be the culprit if she's allergic. However, all of the formulas she's been on in her life have had a corn derivative... so we'll see.
Other findings from that day:

• Her upper airway is a mess (we knew this)... damaged from reflux and it appears structural damage from the repeated intubations several years ago (prior to the trach) and her own structural anomalies from birth. We have already been referred to a new ENT at Stanford who is more experienced in difficult airway issues and will pursue that once the GI issues are more stable.
• Her lungs look GREAT! Despite the horrible reflux that she has and the inability to coordinate a functional swallow, Gracie is not aspirating at all! There were absolutely NO lipid (fat) cells found in her lungs. This is fantastic news!
• Her stomach is raw inside... with linear ulcers... active gastritis.
• We are waiting on more info from additional labs that her GI doc sent out... Gracie has always shown low albumin levels (even at points of near dehydration). Gracie's nutrition is constantly in a compromised state... so we don't know if her albumin levels are low because of that or an inability to properly absorb protein. http://www.labtestsonline.org/understanding/analytes/albumin/test.html
• We are also waiting for results of a pancreatic elastase test (determines the function of enzymes in the pancreas)

So... we wait for more info and in the meantime will make small changes one by one to rule things out. I stressed to her doc tonight that this is affecting every part of Gracie's life - - she knows that and is determined to help Gracie. Compromised nutrition affects her development and strength both physically and mentally; her discomfort affects her physically and emotionally. When she's uncomfortable, her secretions increase which increases her need to be suctioned and when she can't manage her secretions herself, she becomes distressed. It's a vicious cycle. And, the last place she wants to be when she's not feeling well is at school... which is where she needs to be to grow and learn and have little friends like kids should. I am truly all consumed with finding a resolution for her. It's literally on my mind every moment... constantly trying to troubleshoot, theorize, diagnose and cure.