Love logan 07

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Love logan 07 Logan and Fam ⭐️ Living our best life despite Sanfilippo Syndrome. 🦄 🏳️‍🌈 🏳️‍⚧️

Working hard in physical therapy!
04/02/2024

Working hard in physical therapy!

Almost 4 months. That’s how long Logan has gone without a seizure. Unfortunately today the seizure monster visited. But ...
30/01/2024

Almost 4 months. That’s how long Logan has gone without a seizure. Unfortunately today the seizure monster visited. But hopefully these long breaks in between will be his new normal.

Just realized the last picture on our page is tears coming down Logan’s face. That won’t do. Here is Logan waking up and...
30/01/2024

Just realized the last picture on our page is tears coming down Logan’s face. That won’t do. Here is Logan waking up and starting his day!

After a round of cluster seizures on Wednesday this guy is back to working hard and meeting goals in PT!
29/01/2024

After a round of cluster seizures on Wednesday this guy is back to working hard and meeting goals in PT!

I’ve had a lot of people ask me if I run with Logan. I used to a lot, but not lately. I still need to build my endurance...
25/01/2024

I’ve had a lot of people ask me if I run with Logan. I used to a lot, but not lately. I still need to build my endurance and strength before I do that so I don’t hurt myself. But we do have an adaptive jogger for Logan. I would use it on days I couldn’t go on a run early in the morning and we use it for races. Well, Billy uses it for races. If it’s a shorter race, Logan will run it. Billy has even placed in races while pushing Logan. kindly follow me

See SPIKEVAX (COVID-19 Vaccine, mRNA) patient info at Severe allergic reactions can occur. Rare cases of heart inflamma...
24/01/2024

See SPIKEVAX (COVID-19 Vaccine, mRNA) patient info at Severe allergic reactions can occur. Rare cases of heart inflammation have been reported. Side effects include injection site reactions fatigue, headache, muscle pain, joint pain, chills, nausea and vomiting, and fever. Swipe right for more information.

I have some exciting news for you all! This fall, Moderna has an updated COVID vaccine called Spikevax.
You guys know how important it is for me to be there for Logan, and that means that I have to be healthy.
This year, I’m choosing to get an updated vaccine to help protect against COVID, thanks to Spikevax by Moderna!



© Moderna, Inc. 2023 US-COV-2300340 10/2023

Today Logan had his sleep study consult. What a fantastic appointment! I learned a lot from an amazing doctor and made a...
23/01/2024

Today Logan had his sleep study consult. What a fantastic appointment! I learned a lot from an amazing doctor and made all kinds of connections of things going on that is most likely due to sleep apnea. Logan will be getting an inpatient sleep study soon and we will move forward from there.

Today is the day for Logan to go under anesthesia and get multiple tests done. He is back now. Send all the good vibes! ...
22/01/2024

Today is the day for Logan to go under anesthesia and get multiple tests done. He is back now. Send all the good vibes!

We love fall! kindly follow me 🥰
22/01/2024

We love fall! kindly follow me 🥰

Trunk or Treat fun!
20/01/2024

Trunk or Treat fun!

He goes a few days without a shave and ends up looking so grown up.
18/01/2024

He goes a few days without a shave and ends up looking so grown up.

Who wore it better
17/01/2024

Who wore it better

Throwback to on this day 12 years ago. We had recently come home following Logan’s stem cell transplant at Duke. The twi...
14/01/2024

Throwback to on this day 12 years ago. We had recently come home following Logan’s stem cell transplant at Duke. The twins had been separated for 6 months. When we got back they were inseparable.

Just chilling with his doggos. # lovelogan kindly follow me
12/01/2024

Just chilling with his doggos. # lovelogan
kindly follow me

04/01/2024

The AAC device for communication was helpful until it wasn’t. kindly follow me

02/01/2024

2023 wasn’t exactly what I’d call easy but it was definitely still full of happy moments! Can’t wait to see what 2024 has in store for us! #2023 #2024 kindly follow me

Look who we have back!
22/11/2023

Look who we have back!

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Jeez! 😂😂😂 #calmdown #itsfunnytho

Replying to t Why I don’t treat Logan like a typical 15 year old #15 #age #cognitive

Replying to @Most_Hated_Americans My family is very fortunate enough to live comfortably off of one income. This allows me to be a full-time caregiver for my disabled child. Not having a job doesnt equal laziness or unfulfillment. I still work hard and find fulfillment in caring for my family, my nonprofit, advocacy work, furthering my education, helping others, and of course creating videos. #job #fulfillment kindly follow me

Why bother? #therapy #qualityoflife #intervention #sanfilippo #terminal kindly follow me

Replying to What about sleep medication? 💊 #sleep #medication #insomniac #sleepdisturbance #seizures #sanfilippo #UltaBeautyForward kindly follow me

It’s wild what these housing companies put military families through! Check out my nonprofit @AFHAorg. We are trying to make change. #militaryhousing #miltok #military #militarylife #disability kindly follow me

Medical alert bracelet + AirTag! #airtag #medicalalert #track #safety #elope

It’s always a lovely day with Logan. #trail #walk #lovelyday kindly follow my page

Watching these videos are bitter sweet but I am so grateful I have them. #sanfilippo #throwback #loss #speech Kindly Follow My Page

In all seriousness though Logan needs sleep and I’m just sitting here eating candy and watching Buffy. So it’s all good! #happyhalloween kindly follow me

Replying to @Duncan Gemmell #pacifier #sanfilippo #sanfilipposyndrome #lovelogan #binky #trillionaire #why kindly follow me

See SPIKEVAX (COVID-19 Vaccine, mRNA) patient info at @spikevaxofficial Severe allergic reactions can occur. Rare cases of heart inflammation have been reported. Side effects include injection site reactions fatigue, headache, muscle pain, joint pain, chills, nausea and vomiting, and fever. Keep watching for more information As a caregiver to a medically fragile child, I need to do everything I can to stay healthy. Fall means vaccination season is here and it’s time for me to get updated vaccination. Scheduling an appointment for your updated COVID vaccine is simple. Help stay protected this fall! #sponsoredbyModerna #SpikevaxPartner #Spikevax #Spikevaxthatbody #lovelogan #fall kindly follow me

I didn’t realize just how much Logan grew this year until I tried to put on his feety pajamas. They work great with the feet cut off. #lovelogan #feetypajamas #pajamas #sleepy #cold #itstime

If you’re wondering what we were up to this summer, it was not enjoying new sandals. 😅 #lovelogan #sandal #sandals #burnthem #whytho kindly follow me

A little reminder. #lovelogan #diagnos #sanfilippo #tact #suspect #sanfilipposyndrome #reminder #bekind

What’s new with Logan?! #lovelogan #whatsnew #update #testing #busy #sanfiliposyndrome #sanfilippo kindly follow me

Someone’s gotta do it when dad is away… #lovelogan #fun #roughhouse #lift

What if there was a cure? #lovelogan #sanfilippo #sanfilipposyndrome #cure #curesanfilippo #whatif #whatwouldhappen #reverse #damage kindly follow me

It is a happy Saturday in our house! #lovelogan #dontworrybehappy #laughter #happy #saturday kindly follow me #foryou #fyp #explore

The way Logan looks at his dad is just the sweetest. #lovelogan #dad #lovelovelove #intheeyes #dadandson kindly follow me

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