3. Settling in to our new normal

It has been a while since we updated everyone on how Andy is, so we wanted to fill you in on what has been transpiring behind the scenes with him and our family.

All things considered, Andy is doing well!  We have been seen by just about every specialist under the sun and have been back and forth to our hospital so many times we have lost count.  With that in mind though, we are happy to report that his heart is healthy and strong and pumping well.  Additionally, his vision is stable and there does not appear to be any retinal deterioration or vision loss yet. These are both great news and indicate that we are still in the early stages of his disease.

We have learned that, with these types of incurable diseases, therapies and medication are going to be our best bets for keeping Andy as healthy as we can for as long as possible.  Because of this, we have been hitting the therapies hard and that, combined with starting some new medications, we are seeing great results and Andy has regained some skills and general mobility that we thought he might have permanently lost.  He currently is doing water therapy (physical therapy in a pool) and hippotherapy (physical, occupational, and speech therapy with horses) in addition to his regular school based therapies and seems to be really enjoying them.  Additionally, we found a great therapy center close to home that he can attend for the summer to keep him moving and learning as part of their therapeutic preschool program and summer camp.  We are so glad to have such easy access to all of these unique therapy options!

On top of starting these additional therapies, we also switched Andy’s school program.  Over the past few months, it has been clear that using sign language is no longer going to be Andy’s main form of communication.  Since learning ASL is no longer our top priority for him, we moved him back to our local school district’s special education program.  While they do not have an ASL program, they do have an extremely strong special education program and have the potential to be able to continue to serve him as he declines in the future and has increasing needs.  With this change, Andy will also be closer to home (yay!), on the same school schedule as Jordan (double yay!), and has the potential to attend school right in our neighborhood all the way until the end of 5th grade.  He started his new program April 1 and had a great first day!

We are still working to get additional baseline information on how his body is responding to these diseases and have a few big tests upcoming to monitor his sleeping, determine his potential for seizures, check his hearing levels, and a few other things.  Many of these body systems will eventually be heavily impacted by his diagnoses, so these baselines, while they may not give us much information now, will be helpful to have as reference points in the future.  Unless you hear otherwise from us, assume no news is good news!

Finally, we want to touch on a few things:

• Andy continues to be happy, friendly, and social, but is now presenting like a child with Autism.  He has “happy flaps” when excited and loves to do his “stimming” behaviors (spinning toys, pushing buttons, squeezing squishy things, and chewing on just about everything).  He will most likely always be categorized as nonverbal, however he frequently shrieks, yells, grunts, coos and uses body language to let you know what he is thinking.  The best way to interact with Andy is to get down on his level, let him climb into your lap, and then follow his lead from there.

• Andy is curious and confident, which means he is increasingly wandering off.  Because of this, we ask two things:

• Andy has the curiosity and awareness of an 18 month old in the body of a three year old.  He can reach counters and tables and loves to pick up and throw heavy things.  He routinely trips over cords and small stairs because he is not aware of them.  He will empty out cabinets and tip over furniture if he can manage it.  For our sanity (and the preservation of your space), if we are coming to your space, please help us help you and Andy-proof if possible!

• When we are out, we typically will need to have Andy in a stroller or our wagon (and eventually a wheelchair).  Places that are ADA accessible are great for us since Jordan can explore while we keep Andy safe and contained.  We appreciate you keeping that in mind when making plans with us!

• Andy is now considered immunocompromised.  One of the medications he is currently taking is greatly helping with his mobility and quality of life, however it also lowers his white blood cell count.  With this in mind, please approach seeing members of our family the way you might have during COVID peaks - if you are sick, been around anyone who is sick, or just are feeling off, please let us know so we can either mask, move our plans outside, or reschedule. This is the most important ask of you that we have right now.

• We are still limiting what Jordan knows about the situation.  He knows Andy has challenges, is not a typical three year old, and will be “like a baby” for the rest of his life.  He knows Andy has lots of doctors appointments, hospital stays, and takes lots of medicine.  He knows that Andy will not get married and have kids and will probably live with us for his whole life.  He knows that sometimes things with Andy make us sad, worried, or anxious and we might cry about it.  He does not know that Andy’s diagnoses are terminal and that they are degenerative.  If Jordan has questions about something with Andy, we answer them honestly, but try not to sensationalize things.  If your children know the full picture of what is going on with Andy, please talk with them about what Jordan does and does not know.  Thank you for respecting how we are choosing to approach this with Jordan.

• Speaking of Jordan, he is the world’s best big brother and rarely has complained about the disproportionate amount of time we have to spend with Andy at therapies, meetings, and appointments.  Jordan thrives on quality time and, while we are trying our best to carve out “Jordan only” time, it never seems to be enough.  If you would ever like to take Jordan for special adventures or one-on-one time, please let us know!

That’s it for now.  Thank you for continuing to support us as we follow Andy’s lead in navigating these diagnoses.

Lots of love,

Adam, Colleen, Jordan, Andy, and Baxter