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.