CHOP Update: Fall 2018

Waiting in the warm sunshine for our next appointment.

It has been ten weeks since we started Baricitinib and we had another follow-up appointment at CHOP this week. We started the day with lab work, then met with the neurologist to review his labs and discuss how Will has been doing since our last visit.

Since Will started Baricitinib we have noticed the following changes:
*He can hold his head up longer than he could before starting the drug.
*His trunk strength has improved, and he can maintain an upright posture when straddling our legs for longer periods of time.
*He has become more vocal: think tiny dinosaur…he is not babbling yet, maybe someday. The neurologist says that vocalizing is the precursor to babbling. We all wonder what his voice would sound like.
*He is easier to console, less irritable, and generally happier.
*We think he is bringing his hands to his mouth more often, which has been tough because he bites himself.
*He is chewing and swallowing better than he was, with a noticeable decrease  in gagging on fluids and medicines.
*He is demonstrating reciprocal movements in his legs when assisted to standing and also on his hands and knees. The neurologists and research team is so excited to see this too.

Physical Therapies:
Our team at CHOP recommended custom orthoses and a TLSO braces to use for therapy sessions. In addition to this, we have tried some medications to address the dystonia in Will’s arms and legs. Botox was given on two different occasions but did not seem to make a difference in Will’s tone. We moved onto baclofen, an oral medication but he did not tolerate it at all. He lost his spark and wasn’t eating meals because he couldn’t hold his head up. We have moved onto gabapentin. Gabapentin, like baclofen, has been a drug we are titrating to get to the desired dose. So far, the gabapentin has not made any difference in Will’s tone.

Sleeping (or lack thereof):
Will hasn’t slept through the night in about six weeks. We are a mess, exhausted. No sleep, no energy for exercise, less patience, etc. It’s ugly. We aren’t sure why he isn’t sleeping, but I know that swimming made a huge difference in Will’s sleep cycles. Six weeks ago when we were regularly crashing our friend’s pool, he was sleeping through the night. Could that be all it is, does he just need to move his body? Good grief! Our deck is near completion, and the hot tub is going to be placed in the next week or two. We need to have an electrician do his thing so we can be up and running.

Therapy Pool:
We couldn’t afford to add the pool this summer and have big dreams about what that might be like for Will and the other kids, but it’s expensive and may take another year or more to save. Glamour Pools has an above ground pool with a sunbathers bench option that would be great for Will’s physical disabilities. To sit him in a chair in a shallow area before moving to the deeper water would be more advantageous. We have the sweetest friends’ who give us the open invitation to their beautiful pools; we are very fortunate to have such amazing support.

Baxter loved his human kids

Many of our friends know that we lost our beloved dog Baxter to lymphoma. A huge presence is lost in our home. Every day one of my children say, ‘I miss Baxter.’ Hunter sleeps with the blanket we covered him with while he was sick. My children will never forget the love they have for Baxter. I miss walking into the kitchen and seeing him sprawled out on the floor, watching me with his big brown eyes. I also miss seeing Mia on the floor with him. She always took Will to him and played. Will loved his long-haired friend.

No escaping work

Daddy works during our trips to Philadelphia. He isn’t used to being away from his construction work as often as we have been, the stress wears on him but he tries to juggle it all as best as he can. Will offers a smile as we wait for dad to finish his phone call.

Looking forward:
Our next trip to CHOP is January 8th. We will be there for two days and then fly home. At this visit, we will have labs drawn, see the doctor, and then have research visits with PT, OT, and neurobehavioral psychologists to track Will’s progress on the medication.

WeWill:
We appreciate the GoFundMe gifts, cards, help with the pets and kids so much. PALS pilots fly us to Philadelphia and that makes such a difference for us; we couldn’t afford to go to PA as often as we do without them. Not only does PALS give us the gift of transportation, but it helps Will stay healthy. The germs Will would encounter by flying commercially would undoubtedly impact his health. The monies received from our fundraising helped us with the hotel fees, meals, and Uber rides while we were in Philadelphia. We used all of the donated money for the trip in July, August, and this week. That’s a lot of money in a short amount of time. Having a child with special medical needs is very costly. I just remembered a nice gesture: the night we arrived in Philadelphia we went to the restaurant in our hotel. Our waiter asked what brought us to the city. When we said we were visiting for a medical appointment at CHOP, he apologized and wished us well. At the end of our meal, he brought us a paper bag and said he wanted to send us on our way with some fresh baked cookies. Things like that make me sad and happy all at the same time. Justin ate all the cookies (ok, maybe all but a bite). I ate the lonely chocolate cupcake.

“When I die, I want to know that I helped all the people I could with the time that I had.” J.P.
Arguably the most beautiful person I have met during my life.

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