Living with and conquering Partial Trisomy 13
I started this blog a while back as an inspiration for other families as well as for myself. I wanted a way to keep track of all of the little details of Luca's progress so I wouldn't forget over time. Well, life happened and I just stopped for a while...a long while. Let me backtrack… Continue reading The Loving Luca Foundation is Born….
Early Intervention (EI) is a state funded program that offers assistance to children age 3 and under who have developmental delays and disabilities in the state of Illinois. All states have some sort of assistance, but the terms may vary state to state. In Luca's case, EI covered all of his therapies and special equipment… Continue reading The Magic of Early Intervention
One of the most difficult things we have had to deal with in regards to all of the issues Luca has is trusting our medical team. It's sad, but true. While there are many pediatric doctors out there, not all of them are wonderful. Early on, Luca developed a team of specialists: Genetics, urology, neurology, plastics,… Continue reading Trusting Your Medical Team
Today, a photo of Luca popped up in new newsfeed on Facebook as reminder of what I posted 4 years ago today. It's one of my favorite photos of Luca to date! I was reminded of how much Luca has changed in the past four years and was overwhelmed with happiness! In four years, Luca… Continue reading Four Years is a Long Time!
At the beginning, there were a lot of people in my everyday life that had no idea that Luca was special needs. I guess I was still learning who Luca was and I really didn't know how to answer questions when people would ask, so it was easier for me to not talk about it. I… Continue reading Determination to overcome
I had Landon when Luca was two. I had no idea how Luca would react and if he would understand since I couldn't explain it to him. Greg and our nanny at the time brought Luca to the hospital to meet Landon, but Luca wasn't interested in the least. For the first few weeks at… Continue reading Big Brother Luca
Retarded. I hear that word and it makes me cringe inside. I literally feel like I got punched in the stomach every time I hear it. I hear it more often than I would like and I know that no one ever means offense, but it doesn't change the way I feel when I hear it.… Continue reading The “R” Word
Luca had surgery to repair his lip in early December 2014 when he was just 12 weeks old. I remember being so terrified at the thought of putting our new baby under anesthesia, but it had to be done. The earlier we did the repair, the better the odds of developing proper eating and speech… Continue reading Luca’s Cleft Surgery
In December of 2016, Luca was diagnosed with Autism. He met with a physiatrist that is well known in our area. To get an appointment, I had to call weekly and enlisted the help of the a few of the therapists on Luca's team who had connections with her to try to help to get… Continue reading Autism: The Diagnosis
Infantile Spasms (IS) don't sound or appear harmless, but they are really detrimental to the brain of a developing child. They are considered an age specific epilepsy that typically begin between 3 and 8 months of age. We had already been warned at the time of the PT13 diagnosis that Luca may develop seizures at some… Continue reading Infantile Spasms and the Onset of Epilepsy
Loving Luca 