October 29, 2017

Izzy’s KAT6A Journey

Life for us living with this has been a challenge some days. Izzy was a preemie of 2lbs 10 oz. She was in the NICU for 5 weeks. She is not our biological daughter but came to live with us 2 weeks post NICU. From the start she vomited most of her feedings. She grew very slowly at first and at 5 months old was hospitalized with pneumonia from aspirating her spit up. They did a swallow study and diagnosed her with GERD. We then started feeding her 1-2 oz of severely thickened formula every 2 hours….slowly increasing until we were at 3-4. She never ate more than 4oz until she was over 2. Needless to say, I was exhausted!

As she has aged, we experienced slightly delayed walking and talking. She had a tough time potty training but by 4.5…she had it down for the most part. Today she is 6.5 and in kindergarten. We are seeing learning delays by about 2 yrs but she is so happy and brightens any room! We are finishing testing with neuropsych and occupational therapy and will have an appointment with the school for an IEP soon.

rare-should-never-mean-invisible
questo-e-samuele
fyonas-journey-with-kat6-a-german-familys-story
kat6-foundation-leadership-update
the-story-behind-kat6-and-me
iwanttogettoknowyou
kat6-clinic-opens-at-boston-childrens-hospital
empowering-families-through-the-empowered-grant
2025-kat6-foundation-funded-research-projects
seeking-participants-for-new-kat6a-research-study
a-story-of-strength-resilience-and-gratitude
rare-as-one-network-cycle-1-impact-report
attention-researchers
kat6-foundation-selected-as-a-2024-rareis-global-advocate-grant-recipient
kat6-mother-advocates-for-inclusive-playground
kat6-on-screen
the-kat6-foundation-establishes-committee-to-study-mortality
the-first-kat6-foundation-funded-research-project-gets-published
bowel-obstructions-in-the-kat6-population
recap-of-kat6a-kat6b-virtual-symposium-gi-health-and-beyond
a-long-awaited-answer
for-however-long-became-our-forever
we-urge-doctors-to-dig-deeper-when-children-are-struggling-to-gain-weight
join-our-events-contact-list
kat6a-kat6b-virtual-symposium-recap
czis-rare-as-one-project-awards-kat6a-foundation-150000
reflections-of-a-letter-from-the-past-by-david-woodbury
lilly-meets-a-golf-legend-jack-nicklaus
bruno
carolines-autobiography
18-years-and-31-days
life-as-a-father-of-a-special-needs-child
holidays-with-holden
jack-makes-a-splash
the-story-of-ruzgar
how-to-teach-your-non-verbal-child-what-to-do-if-lost
victoria-peaceful-musical-and-always-cheerful
1-2-3-go-camo
warrens-story
morning-at-my-house
ruby-on-my-mind
dr-arboledas-kat6a-research
eleanor-kat6a-when-dreams-learn-to-fly
beloved-pol-from-spain
kat6a-clinic-february-3-2018
meet-chase
both-sides-of-the-bed
peters-personal-blog
life-on-the-other-side
sweet-savannah-second-diagnosed
live-love-and-laugh-with-will
franki-the-fighter
chloes-history
sweet-holden
joyful-madison
dear-grandson
a-younger-brothers-perspective
peters-experience-with-a-mitochondrial-cocktail
jacks-story
izzys-kat6a-journey
ma-guerriere-chloe
lexperience-dune-mere-francaise
kristens-story