The rest…

I posted an update of sorts, a short blurb about the past three months, but in the background, we have been busy coordinating evaluations for therapies and attempting to obtain important equipment for Will.

When we were handed Will’s terminal illness diagnosis, we were devastated. Throughout his short life, we have wrestled with having to fight for services and equipment we need to care for him. For example, he is too big to fit in a baby bath seat, the type you would buy at Target. He can’t sit on his own, we hold him in the shower to bathe him. Our Early Intervention program (CDS) in Maine has given us a bath seat to borrow until we get one of our own. In November we submitted a request for a bath seat to insurance; we still do not have it (March 2019). CDS has given us other equipment to try so we can start to figure out how to get Will in a standing position. The primary service provider, the Physical Therapist, has been amazing and loves our family very much. She has sat with me as I cried with frustration/worry/grief…all of it. She’s been here since the beginning and I adore her. The rest of it has been hard to navigate.

More fight?
Don’t give up. He’s worth it. iWill.

Will was seen by his Maine neurologist in December for a regular follow-up visit; he did not realize that we weren’t plugged into speech or communication therapy. He ordered an evaluation to be done by a local expert who sees children needing augmentative communication. This evaluation would be the beginning of a valuable roadmap that helps navigate the functional world of communication for Will. He is nonverbal. He is expressive with his body, mainly his eyes, and he communicates in his own way. The specialist asked us to forward the referral to the Early Intervention team (CDS) because they will be following Will into the preschool setting (ages 3-5) where his direct therapies will take place. To our surprise, the CDS team denied our request. They said, “Will does not have the building blocks of communication appropriate for this type of evaluation.” This is not true. They insisted we have a meeting to discuss their position on the matter. They disagreed with Will’s doctor and dug their heels in. “Not appropriate,” they said. I rebutted, “if Will is not likely to sit, crawl, walk or feed himself, does he not need PT and OT either?” If we are talking about the building blocks of future function, let’s have that discussion too.

We fought with CDS for the next six weeks over this and decided to schedule Will’s evaluation and pray that insurance covers it. Fast forward several weeks, we attended this evaluation: Will surprised us all. Not only did he catch on to the games he was part of, but he followed along. We were embarrassed that we didn’t pursue this earlier. We learned so much about “being Will’s voice.” Our second visit is this week; there is so much more to learn about communicating with a nonverbal child. We’re ready! This lifestyle is exhausting, but when you’re fighting for your kid, it’s worth the effort. I know government run programs are not perfect. However, the CDS Early Intervention program in Maine should do a better job managing complex needs children. Better yet, let another program take on those complex children. Maine, you can do better.

Unexpected Gifts:
Our next visit to CHOP is scheduled for the first week of April. There were rooms available for one of two nights needed for the appointment. The harder news was that the room rates were over $300 per night in the usual locations. We reached out to the social work department that assists families visiting the neurology team at CHOP. With their help we applied for the Kolbe Fund, and they approved our request. They gifted us our stay through their “Hopeful Nights” program. We now have a reservation in Philadelphia for our appointment in April. We are so grateful. All they ask is that we pay it forward by donating to the next family who needs help. More about this fund here:

The Kolbe Fund: On Facebook

“In 2011, our son, Max, received a
life-altering diagnosis. With support from
family, friends, and strangers, Max had
the best medical attention and is now a
very healthy boy. In awe of the love and
help we received from others, we founded
The Kolbe Fund to help other families who
must travel for care.”
– Kate and Aaron Schnittman,
founders of The Kolbe Fund

Leave a Reply

Your email address will not be published. Required fields are marked *