Caleb was born with bilateral club feet. We knew about the club feet and had a plan in place before he was even born. Caleb had his 1st set of casts on at 5 days old.
At 3 months old, Caleb started experiencing Infantile Spasms (IS). This was initially misdiagnosed as constipation.
When Caleb first started having seizures it was very scary and frustrating. Seeing my baby like that was hard and having a doctor who dismissed our concerns was very frustrating. As a family it was hard – we thought the club feet were our major issue but it was not. Caleb’s sister was 6 when he was born – so juggling her activities and the extra doctor visits kept us very busy.
It was Caleb’s pediatrician who was able to see the IS and got us into the hospital that afternoon for testing. We were admitted and started on meds that night.
Caleb was diagnosed with LGS at 6 years old. The label of LGS didn’t change life much for us. We had already been dealing with seizures for 5 years. 5 years of an amazing neurologist who listened to us and tried to find the right meds for Caleb.
When Caleb was initially diagnosed – we tried to find more info, but 20 years ago there was no LGS Foundation yet and not a lot of information out about LGS.
Caleb was one of the first pediatric patients to get a VNS in Georgia. I still remember the day that Caleb’s teacher sent home a note saying ‘no seizures today’.
Caleb has had 7 foot surgeries to help correct his club feet. Probably over 75 emergency room visits due to injuries, seizures, or oxygen issues – pneumonia.
In 2016, Caleb ended up in the hospital due to aspiration pneumonia for 22 days and it was determined that a NG tube was needed for nutrition. That was hard for us and Caleb because he loved his food. He loved dipping sauces for everything.
Just like everything else, Caleb kept on smiling and moving forward, but unfortunately he continued having aspiration pneumonia at least 2 times a year.
In fall of 2020 our lives changed drastically. Caleb was admitted to the ICU due to fluid around the lungs and aspiration pneumonia. At one point they had to intubate him and seeing our son like that was difficult to say the least. The doctors were able to take it out but a day or 2 later they would have to intubate again. On their 3rd time trying to take it out – Caleb coded. The next 35 mins felt like hours and while in the hallway the only thing I could do was pray. The Lord Almighty is my strength and comfort in all things.
After this, Caleb’s pulmonologist suggested a tracheostomy for Caleb and we agreed. For Caleb, laying in a hospital bed sedated is not how he would want to live his life.
The past 4 years have been all the feelings. Hard is an understatement – all of the extra medical stuff is crazy – he loved to swim and go snorkeling, but can’t do with a trach.
Caleb graduated high school and is now attending a day program 3 days a week. We also found a camp nearby that we can attend as a family and Caleb loves getting outdoors and hunting.
My biggest advice to other parents is to not give up. If your doctor is not listening to you – find one that will. Find other LGS parents to connect with. Getting involved with the LGS Foundation has given me hope and connections with people that get it. I have found my tribe in the LGS Foundation.
“Caleb is a goofball and has the best smile. He does not let seizures or anything else stop him from living his best life.”
– Written and submitted by: Caleb’s Mom, Lisa
Updated 09/23/24 (KK)