14. Spring/Summer 2026 Update

While we have been posting mini-blog updates over on our All for Andy social media pages, we have not shared a long update on Andy in a while! Check out what has been happening below:

School

Near the end of last school year, we decided to take a big step and pull Andy out of our local school district's early childhood program. It was a really hard decision since we are deeply connected with his team there. They have known Andy since he was just three years old, with many of them meeting Andy just after his diagnosis and while he was still a tiny walking, talking, human tornado. They had a first hand seat to watching his disease progress and supported us through many difficult hospital stays, regressions, and hard conversations about Andy’s future. With Andy leaving preschool and moving up to kindergarten, we decided that, while his team was amazing, his needs far surpassed the school’s ability to accommodate. While Andy spent most of the spring at home receiving home bound therapy services, we visited his classroom the last day of school and were able to say goodbye to all the friends he made there. We hope they remember Andy for a long time and, the next time they see another child who is different, they will think of Andy and ask the child to play with them!

This August, Andy started at a new school in an entirely different school district about 45 minutes away from home. Our home district buses him and his nurse every day from our home to the school and back again, making the transition a little easier for us as parents. His new school is a therapeutic school, meaning it serves kids ages 3-21 who have special needs that cannot be accommodated in a typical school setting. Andy has a whole new team of therapists he has to get used to, but he also now has things like daily adaptive PE, drama class, and a playground that can accommodate wheelchairs. So far, he has had several days at school and we are looking forward to the rest of the year being part of this new school community!

New Equipment

This summer was the summer of new equipment-to the point that our front room is starting to look like an equipment storeroom!

We finally received Andy’s stander, which supports his body in a standing position to help with circulation, digestion, muscle flexibility and strength, and overall alertness. We are slowly easing Andy into using the stander for longer periods of time with the goal of him being able to use it about an hour a day.

Next, we received the Hoyer lift, which is a machine to help us safely move Andy around the house as he continues to grow. The lift has a mesh sling that goes under and around Andy, then connects to an arm with a lever. We use the lever to lift Andy up, then can wheel him to wherever we need him. As we continue to add more nurses to our in-home team, this is going to be a massive help! Now, we no longer need the requirement of “being able to lift 70+ pounds” on our nursing add and our pool of potential nurses will hopefully expand.

Finally, we received his new wheelchair! He now has a Zippie Iris wheelchair. It is much smaller and sleeker (its footprint is about 18 inches smaller in each direction) and also comes with much more customizable support options for Andy as his needs change. It is so adaptable that we anticipate being able to keep and continue to modify this chair for the next few years. A bonus is that, since it is so much smaller, he can now sit in his wheelchair in our van right next to Jordan, instead of all the way in the back by himself. This was massively helpful for long car rides, like the road trip we took to Ohio in August, since Jordan could easily help with whatever Andy needed while we were driving.

Health

Summer 2026 will forever be known as the summer of seizures. Since about February, his seizures have been slowly changing and morphing into new, more complicated seizure types. We have now gotten very familiar with our local fire department, as we have had several 911 calls where the same truck and ambulance respond. In a way, it’s nice knowing they have a general idea of what to expect with Andy and makes the chaos of a 911 response a little less intense.

The seizures got bad to the point where we were giving Andy rescue meds (the emergency medications to stop a seizure while it is happening) daily and his body began to build a tolerance to them, making them less effective each time we used them. We had many trips to the ER-to the point where we now have put together an emergency “Go Bag” with everything we need for ourselves and Andy for 48 hours. The bag now goes everywhere with us because we never know when an especially big seizure could happen and land us admitted to the hospital with little to no warning.

To try and combat these seizures, we started Andy on a ketogenic diet. Medical professionals have not been able to determine exactly how being in full ketosis helps manage seizures, but it is an effective treatment for people like Andy. While we were in the hospital for observation as Andy transitioned to the new diet, we received news that his new seizure patterns fit the criteria for a new diagnosis: Lennox-Gastaut Syndrome (LGS). In typical epilepsy, the brain has one or two seizure types that affect specific areas of the brain. With LGS, multiple seizure types can be happening in different parts of the brain at the same time or in rapid succession, making them exceptionally harder to treat.

With the addition of LGS to Andy’s ever growing list of diagnoses, a few new seizure treatments are now available to him. One of the new options we are pursuing is a medication called Epidiolex. Epidiolex is medical grade CBD. It is currently FDA approved for treating complex seizures, however it is also in clinical trials as a treatment for Sanfilippo Syndrome. Since the one medication could alleviate symptoms from two of his major diagnoses, we were excited to try it! We have been giving it to him for about a month now and Andy has been more alert, awake, and engaged throughout the day and his recovery time after a seizure is getting shorter. It seems like the Epidiolex may clear up some of the noise in his brain caused by the seizures and Sanfilippo Syndrome, allowing him to be more available to those around him. We have also noticed Andy doing a lot more smiling and vocalizing while on the medication - something that is so nice to see and ear!

Upcoming

That's all the major updates we have for now!

We would love to invite you to join us at our upcoming fundraising benefit for Andy's 6th birthday! It will be held at Kohl Children's Museum on Sunday, October 18, 2026. Please click here for more details!