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.

Tuesday, May 29, 2012

The Little Engine That Could...

One of the stories that Josh and I like to read to Jake is The Little Engine That Could. I think most people are familiar with this popular children's classic, which tells a story about a stranded train full of toys that is unable to find an engine willing to take it over a very steep mountain. A little blue engine ends up taking on the mighty challenge, all the while saying "I think I can, I think I can," and to his very own surprise he does!! I like this story because it has a great way of showing what can be accomplished with an optimistic attitude, hard work and a bit of bravery.

The story also reminds me a bit of Jacob and our family's journey with Niemann-Pick. We have tried to approach every new situation with the most optimistic attitude possible, but most of all I think our brave little man Jacob has helped us to continue on with the "I think I can" attitude. Jacob continues to persevere despite the challenges he faces as his disease progresses. In fact, Jake's been doing so well after his surgery that we went for a weekend adventure to Tilden Park to ride the steam train. Jake even smiled quite a few times while watching the train roll on by.

Watching the train roll by
Checking out the engine with Daddy
Family Funday!
The last two weeks have been full of adjustments as we all get used to Jake's new routine. After a few days on the feeding pump, we realized that the volume (500 ml) and feeding rate (50 ml/hr) were a bit too much for the little man. Jake wasn't eating much during the day and one night he threw up in his bed, so we cut his feeding in half (250ml at 25ml/hour). Since then, he's been doing really well and getting at least one full bottle each night. We also got a little personal tutorial from our good family friend Terri (also a nurse at Children's) on how to administer bolus feedings during the day. The bolus feedings will allow us to give Jake an extra couple of ounces after regular bottle feedings to supplement what he might not be taking on his own. We'll slowly adjust his feedings upwards in volume and rate as much as Jake can tolerate. In fact, we just bumped him up to 30 ml/hour this past weekend and so far so good...well minus the night we "fed the bed". Jake rolled over on his feeding tube and the pump continued to run all into his bed. That was a fun mess to wake up to - NOT!

Jake's post-op appointment with the surgeon went well and his g-tube site is healing nicely. We go back again next week to hopefully get the stitches removed. The g-tube "button" itself requires daily cleaning and even though it's not the most pleasant task, it's getting a bit less gross as it heals up. For now, we're wrapping gauze pads around the button to keep the oozing (gross part) to a minimum.

Jake's sleep schedule is still a bit out of whack and he's been really restless at bedtime. We've had a few nights where he hasn't gone to bed until after 10 p.m. -- far beyond his bedtime reading of The Little Engine That Could. The good part is that he's slept through the night a couple nights and is sleeping past 5:30am (until 6:30-7:00ish), which is awesome for his sleep deprived parents! The other great part is Jake's energy level, which has definitely seemed to increase since he got his g-tube. In fact, he's been using all of his special new toys and equipment with great enthusiasm. Jake's therapist snapped a great picture today of him in his new chair banging away on his xylophone. He loves his new chair and it's great for Josh and I because we have another way to engage Jake in play in a more upright position. Over the past month, he seems to have lost some of his muscle strength and is not able to keep upright in his jumpy or stationary entertainer. We're hoping he can regain some of his strength so he can bounce around again, but for now...he's got the great blue chair!

Happy boy in his big blue chair
Eating, sleeping and playing...pretty much sums up Jake's typical day, minus doctor's appointments. Jake did have an appointment with his neurologist last week. There's not much to report and honestly, it wasn't the best appointment. We had to update his doctor on a lot of the regression in skills that we've seen lately and found out the hand tremors (shaking) he's been having are a sign that he is losing some muscle control and were told that it may lead to muscle rigidity down the road. Right now it doesn't seem bothersome to him and we were assured it doesn't hurt. We left the appointment a bit disheartened, but quickly brushed it off because that night Momma got a great big belly laugh from the little man...music to our ears!!!
We're determined to be optimistic and we're not going to focus on what Jacob can't do -- he's not our "little engine that could", he's our little engine that CAN!!

Saturday, May 19, 2012

Family Photo Shoot Fun

So excited to share a couple pics from our recent family photo shoot!! Our photo shoot took place on the Saturday before Easter at Briones Regional Park -- one of our favorite spots. Jake was a little overdue for a nap, but we still managed to get a few smirks out of him. Our photographer Katie Zaboy was amazing and very patient, as we took a couple breaks to feed Jake and walk him around a bit. If you're even in need of wonderful photographer...Katie is your gal!

Sleepy guy

Our favorite pic ~ Jake just loves smiling for the camera (not!)

Lovin' the little man in argyle

Jakers loves getting kisses

So serious : )


I just love his cute little feet in this one.

Monday, May 14, 2012

Post-Surgery Update & Special Mother's Day

As many of you already know, Jake's G-tube surgery went very well! We're so grateful!!! There was a two hour delay in the OR, but Jake handled the wait (and empty stomach) with relative ease -- thank goodness! The absolute worst part was watching the OR nurse carry him off for surgery as he looked over her shoulder at us. His actual surgery took almost three hours because they had to be extra careful to avoid puncturing his enlarged liver and spleen, so we had to wait an hour and a half longer than expected. As you can imagine, we were pretty unnerved by the wait, but as soon as he was in the recovery room we were allowed to be right by his side. Jake had a tough time coming out from the anesthesia, so they gave him a little dose of morphine to help him relax and sleep it off a bit.

Holding Momma's hand in the recovery room

Post-operatively, Jacob stayed on the third floor surgical unit in a teeny tiny (8' x 10') curtained off area complete with pull out chair for Momma to sleep on. It was tight quarters, but we had some nice nurses taking care of the little man. For anyone that has ever stayed overnight in the hospital, you know that it is quite possibly the worst place to get rest! Jake was pretty restless the first night and had a bit of pain and general discomfort from the surgery on Friday, so he was pretty uncomfortable much of the day. He had a tough time sleeping Friday night because there were a few other kids who cried off and on most of the night, so he spent much of the day Saturday sleeping. During the hospital stay Josh and I were taught how to use and care for Jake's feeding tube, as well as how to push medicine through his feeding tube -- this will be so great in the future! The first attempt was a little comedy of errors that resulted in 1.) syringe being dropped on the hospital floor 2.) syringe pulled too far out and then a re-do of suctioning causing air bubbles 3.) clearing of air bubbles resulted in Motrin being shot up on the ceiling 4.) call in to the pharmacy for more Motrin since most of it was on the ceiling. We had a great laugh!!

Jake has a new found love for flavored sponges

Watching some cartoons with Ele

During Jake's hospital stay, Josh got a chance to meet two incredible dads who happened to be sleeping overnight in one of the family lounge areas. They each told each other their reason for visiting Children's Hospital. You have to understand that Children's Hospital Oakland treats children with a wide array of conditions and diseases, so everyone that you meet is faced with their own unique challenges and heartache when it comes to their children. One of the dads was accompanying his daughter, who has had severe seizures on a daily basis for most of her life and the family had just moved to California to seek care for their daughter. For those who know Josh, you know what a unique and funny guy he his. Well, Josh showed up to her room the next day and did a few magic tricks for the little girl. Josh said that her face lit up with a huge smile and she laughed with excitement, so much so that her mother got teary because they had not seen their daughter that happy for a very long time. The little girl even told Josh that he was the "best magician in the world" -- pretty impressive for a guy who knows about three magic tricks. I know that my summary of this moment in time falls quite short of truly sharing how truly special it was. That same day the parent's of the little girl, gave Josh a picture that the little girl had drawn along with an incredibly touching note to our family. It's just another reminder that no matter how hard you may struggle with the circumstances that you've been given, there is ALWAYS love, laughter and a bit of joy to "light" up the world. I'm thankful that Jake has such a special Daddy!!

Grandpa Dennis visting Jake
Motrin on the ceiling and magic tricks aside...Jake was slowly being acclimated to the hospital feeding pump as they bumped his feeding rate up every 4 hours or so. This took a while, so we arranged to have his home feeding pump delivered to the hospital. We were bound and determined to get home on Saturday night! We were actually discharged right at midnight on Saturday because we knew any sleep at home would be better than what we could get at the hospital -- no crying kids, beeping monitors, middle of the night vital checks... you get the idea!  It was a late night for Josh and I setting everything up at home, but well worth it to wake up on Mother's Day snuggled up with the fam! This was the most special mother's gift of all! As an added bonus, my Dad spent the day Saturday planting fresh flowers in our big planters out front complete with solar lights to add a little sparkle at night. It was such a sweet surprise to come home to. Thanks Dad!!

Now that we're at home, Jake's G-tube looks good and he's tolerating the nightly pump feedings nicely. I'll post a pic of his "button" once it's healed.  Since Jake's getting so much nutrition at night, his sleeping and eating schedule is a bit out-of-whack. It's going to be an adjustment for us all. Over the next couple of weeks, we will work on figuring out what his new schedule will be and adjusting his feedings as needed.  The feeding pump is the very first piece of medical equipment that we have in our home, so it's a bit of a learning experience. Rest assured, that we're actually catching on quite quickly! We did have a little snafu with the pump last night and a 4 AM BEEP! BEEP! BEEPING! We quickly figured out that it was due to a power cord issue, but we were able to get a new pump delivered earlier this afternoon. We're also getting set-up for on-going supply delivery of all his feeding supplies. All-in-all, Team Brooks is doing well!!

Jake's feeding pump

We greatly appreciate all the love and support that we continue to receive from our family, friends, and even those we have never met. Your calls, texts, cards, e-mails, Facebook posts and prayers mean the world to us!

Wednesday, May 9, 2012

Tomorrow is the day!

Jacob had his pre-op appointment yesterday at Children's Hospital Oakland and everything looks good, so we're moving forward as planned with his gastric feeding ("G-tube" ) surgery tomorrow. Check in is at 7:00 am and surgery is at 8:30 am. The procedure should take about an hour and a half. Jake will have to stay overnight for 1-2 nights while he recovers, but we'll be right there with him.

Josh and I continue to have mixed emotions about this surgery because after all...surgery can be a scary thing! Mostly we have anxiety around how this change will impact our family. In terms of caring for Jake, is the g-tube just one more thing to worry about -- ongoing maintenance, how we'll be able to snuggle comfortably, infection risk? Jacob's bout with RSV, back-to-back colds, lack of weight gain and lethargy have been constant reminders as to why he needs this procedure. The g-tube will allow us to have peace of mind knowing we have an alternate way to give him the proper amount of nutrition he needs, especially when he is sick. We've seen so many changes in Jake the last several months, that we are mostly just hopeful that this surgery will give Jake exactly what he needs to re-gain the energy and strength that he had prior to his RSV hospitalization in February.

In fact, I had a long conversation with Jake's infant development therapist Christina last night and expressed my concerns with his regression in skills. It's not something that Josh and I talk a lot about to others because quite honestly, it's very difficult to see your child lose the ability to do the things that made them so happy before. We feel that his body has been fighting so hard just to fend off colds that he doesn't have much energy to expend on much else. Christina is working on getting Jake some special new equipment and toys that will help us better adapt to Jake's current abilities. She's amazing!! In the meantime, we all have the highest hopes that this surgery will help Jake rebound to the little man who smiles bunches, laughs out loud, and kicks his legs with excitement!

Here's a video taken of our happy boy back in January of this year (click link): Jake Kicking & Laughing.
Please keep the little man in your thoughts and prayers!