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!!