Back to School, Back to Reality

A new school year brings new emotions. Well, they’re not actually new – rather emotions that are tucked away and at times triggered with reality.

As much as I love seeing kids’ 1st day of school pictures (honestly I do), it is also a challenge seeing them hold a sign sharing their age and grade. I do my best to avoid reality… by not knowing the age of a child because it’s hard to see a kid younger than Charlie doing all things that he cannot. And details of what they want to be when they grow up. I need a sign that simply says I want my child to grow, is that too much to ask?

So far this year, 3 kids died who we’re friends with. Charlotte (4yrs old) passed away in February a few hours after successful saliva gland surgery. Marjorie (7yrs old) died in her sleep in May. Henry (6yrs old) passed away in August. I know Henry the least yet it hit the hardest. It has been an emotional year. And, if you find the time- please click the Marjorie link to read her obituary. My favorite line is “ A letter sent home to Gibraltar students following her death said it best: Marjorie’s short time with us taught us to appreciate the beauty of differences and loving each other for who we are.”

Something happening to Charlie often trickles in and out of my thoughts but when tragedy strikes a fellow kid- it’s hard to ignore. It’s not for selfish reasons only, but the deep sadness I feel for the parents. I have a huge fear of losing not only Charlie, but grandpa. I honestly don’t know if one could survive without the other.

A new school year brings more hopes that I have for Charlie including a voice. Just today, Charlie’s teacher messaged asking if Charlie was acting normal this morning because he’s a bit off at school and keeps lifting his left leg. When you have a child who doesn’t talk or even communicate, you analyze every single thing. When he cries it – I wonder, are you hurt.. sick.. or is it that I’m annoying you? I’m sure Charlie has had headaches, but I wouldn’t know because he can’t tell me so he just has to power through. Charlie has been coughing more than usual – which means not sleeping very much because of that constant cough. Usually he will cough out stuff but he’s struggled. It’s as if something is stuck because he’s had some productive coughs. He hasn’t been sick – no fever, nothing else – just coughing more than usual. I messaged his pulmonologist and she is amazing. Right away she offered two options to possibly help: azithromycin because it was help with rhinovirus and bacteria or steroids. We started with the antibiotic and it worked. He’s back to his normal coughing and normal sleeping. The reality is – we never know what’s truly happening and we have to do our best job guessing.

Packer player Kylin Hill with Charlie & his friend at school

Before school started we took a family trip to Ohio. It’s the second year in a row that we drove to Ohio to see my family. This time my cousin got married. Charlie is obsessed with being around people plus these are the people that he sees all the time on facetime but rarely sees in person so it’s very exciting for him to see them in person… especially Mimi (my grandma) who is our facetime go-to since she always answers.

Sound asleep in the middle of our Ohio family BBQ

We did A LOT of driving. The day before we left I had worked that morning and then Grandpa, Charlie and I drove to Neenah for PMR (physical medicine & rehab) and neurology. We talked with PMR about Charlie’s muscle tone and medical equipment we could use. Our neurology visit was good because Charlie started taking diazepam about a year prior for his startle episodes/muscle spasms. It has definitely helped; however, Charlie’s head control has worsened and we weren’t sure if the medication is partly to blame. We talked about reducing the dose but I informed the doctor that Charlie’s legs now shake periodically. The doctor says that the shaking is clonus – a type of neurological condition that creates uncontrollable muscle contractions. Medication like diazepam helps with clonus therefore he wants to keep the dosage as is. After those appointments we drove to Greenfield (Milwaukee) for Charlie’s post-surgery scoliosis appointment. He got his bandages off and stitches from surgery out.

The next day we hopped back in the van and drove the 8-9 hours to Ohio. Charlie was so happy to be there. He doesn’t love riding in the car but did fine. Our new wheelchair van has bluetooth so we can talk on the phone and everyone can hear. Charlie LOVES that. He will sit and listen for hours if possible. The van also has a dvd player. We turn on a movie … Charlie cries… we turn it off and call someone (it can be anyone including the pharmacy).. he’s fine.. you hang up and turn on the movie again.. he cries. Needless to say he loves talking on the phone and knowing what everyone is doing. And let’s be serious – he loves gossip!

It was a tough trip. I watched my sister’s family do all the things typical families do with their kids. All the things we cannot do. They stayed at my stepsister’s new lake house on Lake Erie. They enjoyed jet skiing and visiting Cedar Point, the amusement park I grew up visiting. They went boating (tubing and wakeboarding) with our friends and their kids. We went to the lake down the street with our high school friends for the kids to play and the adults to hang out. The kids swam and fished – Charlie sat next to Al watching adults play pickleball. Charlie doesn’t play. Kids don’t play with Charlie. The reality is that Charlie cannot play so I understand. I struggle playing with him also because you have to do the playing.

My cousin got married in Cleveland, about 25 minutes from Mimi’s house. All of my family booked hotel rooms. Al and I were encouraged to book one also so we could stay up late and have fun… well, we have Charlie and a van full of medical equipment including refrigerated medication and food. There is no way we are staying in a hotel unless we have to. A friend watched my sister’s kids overnight and … so sweet…she offered to take Charlie also. I said oh my goodness, no. If anyone could handle Charlie it would be her, but let’s be real, could you imagine if I said oh ok yes, here’s his feeding pump, here are all his meds, you give this one at this time and these then… make sure to put his leg braces on.. be careful where you take him because he’s having bad diarrhea and it can be messy if you’re out and about, make sure to carry him this way so you don’t snap the rods in his back, etc. That on top of watching her own kids and my sister’s kids. Again, I know she could handle it but I could never do that to her or anyone. Despite my personal emotional struggles, we had a nice time and more importantly – Charlie loved it!

Charlie has been taking vijoice (alpelisib) since May 2019 for his pik3ca mutation (birth mark, extra thumb). He was part of a trial, as it wasn’t on the market yet. Within weeks of taking the drug, the birthmark mostly went away and Charlie seemed to be happier and doing well. We didn’t notice any side effects. Over the years we have battled diarrhea with Charlie and we would stop the medication to see if that was the culprit. We determined it was not. July 2021 we increased the dosage from 50mg to 100mg. Again we didn’t notice any side effects. In hindsight – we are now curious if vijoice is the cause of Charlie’s shiny skin rash morphea. Going back through my notes, the shiny skin on Charlie’s chest began a few weeks after increasing the dose. I didn’t put two and two together until we met with Charlie’s dermatologist to discuss his morphea diagnosis. While Charlie is unique, she finds it odd that morphea just suddenly appeared and questions if the medication is to blame or it’s related to one of his two genetic mutations – even though there isn’t anything written in research articles. We decided to stop the medication to see if (1.) Charlie’s skin improves; and (2.) the medication significantly benefits Charlie overall – as we aren’t really sure if it’s helpful and if so, how much. So far we have noticed more solid stools so we are hopeful that continues!

Selfishly I am MORE THAN HAPPY to stop the medication because get this: now that the drug is on the market, it is not easy to get. It is extremely expensive and only a few pharmacies offer it. Novartis has a program to assist families in order to make it easier to access…. HOWEVER, it is time consuming and obnoxious. This lady named Tammy calls every 4-6 weeks and refers to herself as my “care champion.” She’s called a few times and it’s never a quick call but then she called during my nap and that call .. was anything but quick. Tammy shared that we’ve been approved for the program and would like to go over the approval process with me. She asked if I had time for that. I said “yes” – thinking let’s get this over with so I can go back to napping. She followed my “yes” with.. “ok, this will take about 90 minutes.” I’m like what? 90 MINUTES? Anyways she instructs me to grab the welcome packet that we received in the mail. I’m thinking… hmmm, the packet of pamphlets I threw away. But I told her “yep, got it right here!” She told me to pull out a certain pamphlet and turn to page 2. Me pretending to do that said … hold on, ok, yep I’m here while hoping she doesn’t call me on my bluff. The nearly 90 minute phone call consisted of her reading these pamphlets to me word for word which share information that I already know such as what the drug is, why it’s prescribed, possible side effects, how to administer, etc. I’m sure this is helpful for new patients but Charlie has been taking this drug since 2019. When we hung up I thought, glad that is done, until Tammy said “alright I’ll call in another 4-6 weeks and we’ll discuss another topic.” AHHH! Please, make it stop! Well, hopefully Charlie does well OFF the medicine for his sake and mine.

We stopped Charlie’s thyroid medication because his labs have been consistent for several months. He’s been taking methimazole for hypothyroidism. His first round of bloodwork since stopping the medication was good. Charlie just had labs done again this week and they are normal, but his TSH level is dropping and approaching abnormal levels which would indicate hyperthyroidism.

Apple Picking

Up next – we see cardiology for an echo. His heart has been doing so well that we have spread out appointments every 18 months. Charlie’s next back surgery is early December and great news, we were able to schedule his eye exam under anesthesia (EUA) on the same day. That’s huge because it’s one less trip to the CHW operating room an one less anesthesia procedure.

Charlie has been referred to a dental specialist. His dentist suggests seeing a specialist to put Charlie under anesthesia for a dental cleaning. Tartar is starting to build on his teeth. Despite brushing his teeth daily, doctors say that this is common for kids who don’t eat by mouth. It will also be beneficial to do x-rays to see where teeth may be coming in. So far Charlie hasn’t lost any teeth and it’s a concern since he aspirates everything… in other words, it’s likely that if he loses a tooth it will go into his lungs.

We added a new caregiver to the mix to fill in gaps and to stay overnight, if necessary. Al has a work trip coming up so this new caregiver will stay over two nights in a row to help. We are so grateful for the people who care for Charlie. They are amazing and genuinely care about him.

I took a long girls’ weekend to spend time in Door County with my Milwaukee friends. It was exactly what I needed!

Please say a prayer for the families I mentioned above. I pray that their broken hearts can heal.. if that’s even possible. Pray for normal thyroid levels, normal stools and normal skin for Charlie so that he can stay off two medications indefinitely. Pray for my emotional well-being, a successful cardiology appointment and continued happiness for Charlie.

Swinging Up North