We originally created this blog to keep family and friends updated about our little man Jacob, who was diagnosed in the summer of 2011 with a rare, life-limiting genetic disease called Niemann-Pick (type A/B). Jacob earned his angel wings on November 15, 2012, but remains our daily inspiration and constant reminder that we must live in the moment and fill each day with JOY, LAUGHTER and an abundance of LOVE.

Thursday, June 21, 2012

Embrace Life

Our family is once again heartbroken to hear that an amazingly strong little boy named Trek, passed away from Niemann-Pick Disease type A. Our hearts go out the Ingram Family as they mourn the loss of their sweet little boy and brother who was only 14 months old. Although his time here was far too short, he lived an incredibly adventurous life filled with an abundance of love. I've been following The Ingram family's blog Our Sonny Life (written by Trek's wonderful Mama) for several months now and am in constant awe of the this family's approach to Embrace Life as they go on adventures in search of more passport stamps for Trek. This family is so incredibly inspiring!!!

Trek was one of the four children in the United States currently persevering against Niemann-Pick type A. Even though Jacob is technically considered type A/B because of his gene mutations, I include him in this count because of the way his disease is progressing with early onset and the symptoms that he has. In connecting with these other families whose children have Niemann-Pick Disease, I feel a deep connection with all that they are enduring. There are no words of comfort that I can offer, but I have deep empathy for this tremendous loss in their lives. It is difficult to describe, but my soul is crushed each time one of these little angels leaves us and my heart literally breaks to pieces when I think about Jacob.

Please send extra prayers and loving thoughts to the Ingram Family. If you visit their blog, feel free to leave a comment because every kind word and prayer really does matter!

Trek has left his footprints on our hearts!

Monday, June 18, 2012

The Tooth Hurts!!

We all had a fantastic time celebrating our Dad's yesterday (especially Jake's daddy) with poolside fun and BBQ's for Father's Day! Jake even got in a little pool time with Daddy and actually fell asleep wading in Josh's arms. Too precious!

Pool time snooze with a little ladybug on his hat

Jake did amazingly well with all of the festivities, but by the end of the night he started to get a bit fussy. We realized that his gums on the bottom right-hand side had erupted into a rather inflamed and quite honestly, scary looking thing. I should add that we have been waiting for this bottom-right molar to make its appearance since January -- yes, JANUARY! Over the course of the night, Jake also developed a cold with a boogie nose and slight cough. Seriously!?! He was pretty miserable.

See the big inflamed gum on the left? Ouch!!

Coincidentally, Jake had a check-up with his pediatrician on Friday and we had mentioned that we were concerned about his gums being so swollen for so long. Dr. Handelsman gave us the contact information for Aloha Pediatric Dentistry, which she highly recommended. We always trust Dr. Handelsman's advice and she is always such a great advocate for Jake. Well, that card came in handy because I contacted the office this morning to explain Jacob's situation and they scheduled us for an office visit within a couple hours. We met with a wonderful dentist and even had an impromptu drop-in consult with the oral surgeon from the office next door. Great service! It turns out Jacob had an erupted cyst on his gum, which they decided would be best to remove.

After our dentist visit, we walked right next door to the oral surgeon's office and 45 minutes later he was in the chair getting the cyst removed. It took a couple of Novocaine shots to numb it and 10 seconds later it was gone!! Jake only cried for the shots. He is so tough!!! I'm sure it was a huge relief for Jakers, but it was tough on Momma and Daddy to watch him go through all this.

Right after the procedure chewing on gauze...not one tear!

I had a little mommy meltdown after Jake's appointment. It is always difficult to see your child suffer through any kind of discomfort and sometimes it is just too much to bare that our little man has to endure so much pain. Today was one of those "life's not fair" days. That said, Josh and I are sooooo grateful for the amazing service we got for Jake today, as well as the follow-up calls from both the dentist and oral surgeon to check-in on Jacob. It makes a tough situation much more bearable. Crossing our fingers that his mouth heals quickly and that this summer bug disappears soon!

Friday, June 15, 2012

Jake's Gonna Be a Big Brother!!!

Jake wanted to help make the official announcement...

Yep, you read that correctly! Jake is going to be a BIG BROTHER!!!!!! The best news is that we've completed all the appropriate genetic testing and confirmed that our newest addition does not have Niemann-Pick disease! The baby does have one of our gene mutations, but will be an unaffected carrier. We are so unbelievably happy and feel incredibly blessed to welcome a new baby into our family. As you can imagine, this was a very difficult decision for Josh and I to make. Loving and caring for Jake remains our top priority! We know in our hearts that this new baby will bring an abundance of joy into our lives, just like Jake has and we know Jake will be a great big brother!
Our favorite moment was telling Jake that he's going to have a healthy baby SISTER!! Right after we told the little man, he had one of the biggest, brightest smiles that we've ever seen and it just melted out hearts! Baby girl Brooks is due to arrive somewhere around December 3rd.

Special cake we used to surprise our families with the good news!!

Wednesday, June 13, 2012

POP!! Goes the G-Tube...

G-tube stoma site covered in gauze

Jake's G-tube popped out of place last night when I was putting him to sleep in his crib. It happened so fast that I'm not even exactly sure how it came out...maybe he pulled on it or perhaps the slack of the cord got caught up. Regardless, it popped out like it was nothing and Jake barely cried! I covered the stoma site (hole in his tummy) with gauze, grabbed his extra Mic-Key kit, and we were on our way to the Children's Hospital ER. Grandpa Dennis accompanied Jake and I to the ER because Josh was at work. Once at the ER, we were triaged right away and within less than two hours of the G-tube popping out, the doctors had a new one put in. The site is still so new that it had already started to close a bit, so they had a tough time getting the new G-tube in. It required a bit of stretching of the site, which Jake had a hard time with. I can only imagine how uncomfortable it must have been for Jake, but the doctors were able to get the G-tube placed without use of IV pain medicine or X-rays, which would have been much worse! Our little man is so tough!!We anticipate that this won't be the first time that this happens, but now that the site has healed enough it should be fairly easy for us to re-insert the G-tube on our own.

G-tube with inflated balloon, which is supposed to be INSIDE Jake's tummy

Monday, June 11, 2012

Trying to Catch Some Zzzzzz's

Two big updates:

1.) Jake got his stitches out!! His G-tube site is healing nicely too! Now that the stitches are removed we can clean the site a lot better and he can rock his colorful new button buddies! Special thanks to my friend Adryon for the great recommendation. I'll have to share a pic soon (once I remember to take one).

2.) Jake had his sleep study on Friday night at Lucille Packard Children's Hospital Sleep Clinic in Mountain View. It was actually more of a non-sleep study because Jake had trouble sleeping the entire night, which was quite understandable considering he was hooked up to 29 wires...yes, 29 wires!! He had sensors measuring all sort of things: heart rate, oxygen level, air exchange, eye movement, and lots more! Jake did amazingly well while they put on all the sensors on and didn't cry at all!

Starting to put on sensors -- this one reminded us of a caveman bone under his nose : )

All 29 sensors and wires!! He was video recorded all night to monitor breathing and any chance of tangled wires

Only one parent was allowed for the test, but Daddy was a trooper and slept in the car so that he could still accompany us for the test. Thank goodness he did!  It was an hour and a half drive to Mountain View, then we had to unload the car, set up Jake's feeding pump and get him situated for the study. The sleep study was over the next morning at 6:00 am (on the dot) and overall it was a pretty restless night for all of us. Needless to say, we spent some time over the weekend catching up on some much needed Zzzzz's.

We should have the results of the study in a couple weeks and will review the findings with his pulmonologist. We're hoping to get answers on why Jake wakes up so much during the night and determine whether or not he might need supplemental oxygen to help with his irregular breathing. At this point, we're fairly certain that Jake has sleep apnea.

Thursday, June 7, 2012

Baby Jake

We received the most wonderful gift this week and it is just too special not to share. Jake's Uncle Glenn (Josh's brother), Aunt Madea and the girls stopped by yesterday evening for a surprise visit. They also brought along Madea's brother Wayne and his wife Annette, who gave us our wonderful gift...

"Baby Jake"
It's a giclée reproduction of the original that Annette painted and it's stretched over canvas -- simply stunning! Annette was even kind enough to give us all a little french art lesson on how to actually pronounce giclée (zhee-klay). The portrait painting is called "Baby Jake".

Before yesterday, Annette had never even met Jake, but she managed to take a picture she had seen from our November 2011 family trip to Bodega Bay and truly captured the sparkle in his big brown eyes and the innocence in the little face that we love sooooo much!
Our family is so incredibly touched to have been given such a beautiful gift. It is something that we will treasure forever!!

Tuesday, June 5, 2012

Under the Boardwalk, Down by the Sea

We spent this past weekend enjoying a long-awaited weekend trip to celebrate my (Momma's) birthday in beautiful Santa Cruz, California!! Actually, it was the 2nd anniversary of my 29th birthday (hehe)! This was the first mini-vacay that we have taken since our trip with Josh's family to Bodega Bay in 2011. Jake's Grammie Kathy and Grandpa Dennis (Sarah's parents) joined us for the trip, as well as Jake's great uncle Mike. On Saturday, we had dinner with some of Grammie Kathy's good friends and got to enjoy a gorgeous walk along the coast. We even got a chance to meet up with our good friends Jason and Stacey Wheeler who were celebrating their anniversary down in Santa Cruz. Good times, great sunny weather and lots of laughs!!!

The last 6 months have been really tough on our family with Jake either being sick, recovering from being sick, or having surgery, and we've pretty much been home bound. While we love spending time with Jake at home, it's much more fun to go on exciting new "adventures" (that's what we call any type of outing with the little man)! Pretty much any trip outside the home is an adventure for Jake because he's never seen or experienced most of the places we take him. It's a priority for us to keep Jacob as healthy as possible, which means restrictions on a lot activities outside the home and limitations on visitors and play dates with cousins at our home (less germies for Jake). Jacob also has physical limitations, which makes it very difficult to do some of the seemingly simple things that many people take for granted, such as grocery shopping because he's not able to sit up in the cart. At the same time, it is also extremely important that Jacob be able to enjoy life and all that he is able to experience, regardless of the limitations that his disease presents. Josh and I are making every effort to take Jake on as many new adventures as possible! This trip was a kick-start back into the good times that await!

Here's a glimpse at our amazing weekend in Santa Cruz -- Under the Boardwalk, down by the sea...yeah, on a blanket with my baby is where (we'll) be!!

Family photo on the wharf overlooking the Boardwalk

All smiles : )

Hangin' with Grammie - rockin' the new wave hairdo (thanks to an amazing cowlick)

Eating his favorite dessert, creme brulee (the only food he actually grabs for more of)

I just like his cute plaid hat in this one

Daddy trying to win Jake a prize

First taste of cotton candy...mmmm!

No trip to the Boardwalk is complete without Dippen'dots ice cream!

Jake's 1st amusement park ride - Dragon Ride. He liked it!

Momma and Daddy with our stunna shades on (yes, Josh's are purple shutter shades!)

We spotted an otter floating along

View from our evening stroll near the lighthouse -- amazing scenery!

On a blanket with my baby...sleeping on the beach

Jake playing with his new sand toys