A Day in the Life

When we were putting together our presentation for the FDA, one of the things they wanted to learn from us was what a typical day with NKH looks like. The short answer: incredibly busy.

Jack as an exhaustive list of therapy and doctors appointments but we make sure he gets lots of down time on the weekends and around holidays. We are also always ready to switch things up if a seizure, virus or sleepless night strikes.

A typical day in the life looks something like this:

6 AM: First round of medication via Jack's G-tube; Sodium Benzoate, CBD, Keppra, Prilosec, Sodium Bicarbonate, keto supplements and water bolus.

If Jack wakes up early, he'll fall back to sleep with music (he LOVES music).

7:30 AM: Wake up (Jack's not a morning person but usually greets us with smiles and sweet babbling) and breakfast.

Breakfast is a keto friendly solid meal and keto formula then Mom, Dad and Nana do math to adjust Jack's keto intake requirements for the rest of the day.

9 AM: Get ready for the day.

Getting ready for Jack means washing up, brushing his teeth (another love), getting changed (including his compression suit and ankle braces), stretching and sensory brushing.

On Tuesdays and Fridays Jack gets weighed so necessary adjustments to his Sodium Benzoate dose can be made.

9:30 AM: Physical therapy in Braintree where he works for 45 minutes!

Jack's getting very close to head control and also working hard on rolling over.

Every morning is a different therapy depending on the day and week: aquatic, speech, music and vision. Sometimes his EI nurse or child life specialist comes and plays and sometimes it's just Jack and Nana doing therapy exercises, playing and reading.

11 AM: Walk outside in the neighborhood.

Jack gets outside for fresh air and Vitamin D every day unless it's pouring rain.

12 PM: More medicine, water bolus and lunch.

Jack needs Sodium Benzoate every 6 hours around the clock and gets Keppra again midday. He gets water boluses via his G-tube throughout the day to keep him hydrated which is very important on the keto diet (and something he's struggled with in the past). Lunch these days is another bottle of keto formula, we hope to get back to more solid meals soon.

1 PM: Nap time.

Jack likes to fall asleep to Daniel Tiger stories on his Storypod.

3 PM: Craniosacral therapy or feeding therapy.

Jack recently started CST to help with feeding and his overall motor control. We're fortunate to have a great therapist just down the street who can do both therapies. We have started introducing new textures like celery, jerky, pickles and peppers to Jack's diet.

On Wednesdays Jack has OT at home during this time and on Thursdays Jack goes to the chiropractor for help with his alignment and immune support.

4 PM: Stander.

Jack has a goal of 1-2 hours/day in his stander, most days he does close to an hour. Daniel Tiger and Ms. Rachel are Jack's favorite stander companions.

5:30 PM: Dinner.

Right now dinner, like lunch, is a bottle of keto formula.

6 PM: More medicine and water bolus.

Same meds (minus two) as 6 AM, all via his G-tube.

7 PM: Wind down for bed.

Wash up, G-tube care, jammies, story time and hanging with Mom and Dad.

7:30 PM: Bedtime.

12 AM: Last dose of Sodium Benzoate.

Since Jack had his G-tube placed last July he has received all his meds through it which has greatly improved his sleep (can you imagine being woken up in the middle of the night to take a nasty medication?! Every night?!) and made the midnight med administration much easier on Mom, Dad and Nana (we alternate).

Jack's a very busy little guy who works hard every day! We do our best to make sure that even when he's working and even when he's in back to back appointments, he's having fun and knows that we're so proud of him.