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|
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|
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!!