He feels better. Can you see it? Can he feel better than this? Maybe. Will I continue to ask? Absolutely.
Will is showing us that we are right to advocate for him. We are right to ask for the best care available. It’s up to us to insist that the team doesn’t forget that there is a little boy in Maine who relies on them to feel his best.
Do you advocate for yourself the way I advocate for Will? When’s the last time you asked for what you need: Personally, professionally, spiritually?
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: www.thekolbefund.org
“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
We traveled to CHOP in December for Will’s follow-up appointment with the research team. We reported that he had been experiencing a long stint of interrupted sleep and more irritability over the past two months. The team decided to change the dosing of his Baricitinib; they thought he was experiencing breakthrough symptoms. We traveled home to Maine and started our new plan. Over the past two months Will has been happier, more vocal (laughing and squealing), and tolerating being in his stander better. He has also put on more weight and is thriving. Amazing what happens when you’re feeling better! CHOP recommended that we have Will’s lab work checked because he is anemic again. A side effect of Baricitinib is anemia. Since Will has an affinity for red meat, we have been serving him plenty of that. We will recheck his levels in the next week.
Our team at CHOP also recommended that we add a pulmonologist to Will’s team. We found a pediatric pulmonologist in Maine that specializes in neuromuscular diseases. We met with this doctor about two weeks ago and are thrilled to have him on our team. Not only is he trained to manage a kiddo like Will but he has trained at Children’s Hospitals where he had a plethora of experience. We are in really good hands! We are headed back to CHOP the first week of April, and while we thought we had avoided a crazy week of events in Philadelphia, there must be something else going on because we are having trouble finding a HOTEL ROOM! Wish us luck!