4. Back to school!

Life Updates

It has been a busy summer and it’s time to catch up!

Andy spent the summer at In2Great Pediatric Therapy, doing their Ready, Set, Grow Therapeutic Preschool Program, followed by one-on-one therapies.  He was there five days a week and became a local celebrity!  He seemed to really enjoy his time there and we were very appreciative of how flexible and dedicated the staff was, building a schedule customized to him and his needs.  If you are in the area, we can’t recommend them enough!

Last week, Andy went back to school to rejoin his classmates at our local school district.  We had never been able to visit his classroom while it was “in action” (we started in April last year and missed all the “Back to School” events), so it was exciting for us to be able to see where Andy spends most of his time.  When we walked into the building for supply drop off, Andy instantly perked up and started bouncing in his wagon seat, obviously recognizing the space and happy to be there.  We were able to meet some of his new therapists, his daily classroom aides, and a few of the other parents in the room (currently Andy is one of four students) and see how the class runs from day-to-day.  The classroom is bright, colorful, and so thoughtfully set up to make sure that each student has the resources and support they need to succeed.

We also were very excited to see the Logan ProxPad, Andy’s new AAC (augmentative and alternative communication) device, in action!  Using AAC, or an AAC device, means all of the ways that someone communicates besides talking. People of all ages can use AAC if they have trouble with speech or language skills.  Typically, most people are familiar with students who may use an iPad for this, however Andy never really grasped that skill.  The fact that his vision will deteriorate also complicated this decision since, whatever method we chose for him to use would have to be Deaf/Blind friendly.  His team did a ton of work and found the ProxPad last school year but, due to shipping delays, it just recently arrived.  It is unlike anything I have seen before!  The ProxPad uses RFID cards (like what many people use to swipe in/out at their jobs) attached to cards with physical objects.  The objects are great for Andy because they are tactile and tangible - he can use touch to determine what the object is and does not need to see it or be able to read.  The card is touched to the ProxPad device and the word is said aloud.  The classroom has an entire corner wall set up with different tactile objects to use with his ProxPad and the thought and care that went into building this for him is amazing.  Once Andy gets the hang of it at school, they will start sending it back and forth with him to use 24/7.

Andy's afternoon schedule.

The word card wall!

One last special update is that Andy’s grandpa/my dad built a custom addition to the boys’ bunk bed!  This addition allows for Andy to have more space to roll around and spread out, while still remaining contained and safe.  It also allows for Jordan to continue sharing a room with his brother, which is something he loves.  Jordan has his own room but sleeps with Andy every night so that he is not lonely - sometimes I even catch him reading to Andy in the mornings before it’s time to officially wake up.  I love that this addition allows them to have some “typical” sibling moments and memories they might not otherwise have.

The new and improved bunk bed! Do you see Andy snuggled in?

Speaking of Jordan, the most common question we get about Andy is “What does Jordan know?”.  As of now, it is still mostly the same: Jordan knows Andy will not start talking, will not get married, and will not have kids of his own.  He knows Andy takes lots of medicine, goes to lots of appointments, and sometimes has to go to the hospital.  He still does not know that Andy is terminal.  He frequently says how he wishes he had a brother that would play with him more, so we have been encouraging play time with friends and trying to make sure we continue to carve out “Jordan-only” time.  He recently started travel soccer, so we will be doing a lot of this special time at soccer practices, games, and tournaments this year.  

Medical Updates

Keeping Andy entertained during multi-day VEEG tests involves lots and lots of toys.

Andy became officially diagnosed with seizures in mid-April, so we spent much of the summer learning the ins and outs of his epilepsy and medications.  He had an emergency hospitalization in late June to address a change in behavior and seizure patterns where they added additional medication to our growing list of daily prescriptions.  So far, the meds seem to be doing what they are supposed to, but it is still difficult to manage.  Since he is non-verbal and many of his seizures are very slight (they do not look like what you would be familiar with from TV and movies), it can be hard to determine what is a seizure versus what is him just being clumsy and whether he is growing out of his medication dosage.  We anticipate semi-frequent hospital stays because of this and think this will be a constant struggle to find the right balance of meds as he continues to grow.

In July, Andy had a swallow study and it was recommended that we start thickening some of his liquids to eliminate some occasional aspiration he has had.  This will most likely be the biggest change to how we function, since everything, even water, will need to be monitored for correct thickness.  Soon, we will start meeting with a feeding therapist and dietician to begin learning how to best approach this.

Playing in the park outside the hospital between appointments

In terms of progress monitoring, we have had several tests done under anesthesia over the summer to keep an eye on where he is at.  His hearing loss has remained stable for over a year, so we can begin to reduce the frequency of his hearing tests.  He also had MRIs performed to check his spine and his brain.  MRIs of his brain can be helpful in identifying scar tissue, which can be the root cause (or contributing factors) of some types of seizures.  These images will help continue to give us more information as to how his diagnoses are progressing.  Throughout the fall, we have return monitoring appointments with cardiology, ENT, PM&R, and retina specialists.  As always, assume no news is good news!

Some exciting news is that we are starting the process of getting Andy a wheelchair!  While this might seem shockingly soon, Andy hit a growth spurt this summer and is quickly approaching outgrowing both his car seat and his trusty B.O.B. running stroller.  Andy is able to walk, but has a hard time walking long distances and navigating his environment safely.  With a wheelchair, we can easily help him move from point A to point B.  Additionally, once we can get a wheelchair car, his wheelchair can lock into the car and double as a car seat, making sure he is as safe as possible at all times, even as he continues to grow and lose skills.

With the wheelchair comes the need for a wheelchair car.  Wheelchair equipped cars can cost as much as $80,000, which is a huge expense.  To help us with this and other ongoing medical costs, our families have set up a GoFundMe page to benefit Andy.  If you would like to donate, please visit www.allforandy.com/donate. 

Thank you again for your continued support for our family.  As we approach Andy’s 4th birthday and our one year anniversary of his diagnoses, please keep an eye out for fundraisers and events benefitting All for Andy. In the meantime, check out our new All for Andy website at www.allforandy.com.