We All Need a Break

It’s been 5+ months since my last blog. I just haven’t had it in me to write anything. I was burnt out and just needed a break. Break from what? I don’t know. All of it – I guess.

As you know, I organized the Syble Hopp Golf Outing for Charlie’s school with another mom. I constantly said “we’re doing it at least two years because next year will be easy!” Take a guess who backed out? Yes, ME! The outing did me in. Not only did I put in hundreds of hours of work leading up to it, but we were at the golf course setting up from 4PM-11PM on Friday then again from 6AM-4PM on Saturday for the event. We had 208 golfers and 60+ volunteers. That is a lot to manage – not to mention the games, prizes, raffle items, logistics, technology/registration, etc. It was a huge success! I’m very happy with everything – of course there are a few things I would change – but overall it turned out better than I imagined. We raised >$45,000 with all money going directly to the kids. As soon as it ended I checked out with all things golf outing. That includes spending time on a computer unless necessary. Hence a delayed blog post.

Charlie’s having a wonderful school year. As you know – no one loves school more than Charlie. He has the same teacher/aide for the 3rd year in a row. This year, of the six kids in class, Charlie is the ONLY boy! He loves that. He’s also the oldest so I constantly tell him he has to be a role model to the other kids. Charlie coughs 24/7 and it’s a roller coaster of how bad it is. We have had more bad than good with a few colds and virus but all things considered – he’s done well. Every year Syble Hopp hosts Packer Play 60 where the Green Bay Packers visit and put on an obstacle course for the kids. The Packers do this at several schools in the community but I’m told that Syble Hopp is the only school that they visit every year and the only school where actual Packers players attend. This year, it was all tight ends – #88 Luke Musgrave, #85 Josiah Deguara & #89 Ben Sims. Grandpa volunteers annually. He and several staff said Luke, Josiah and Ben were beyond wonderful with the kids and asked for a tour of the school. It is pretty special that the Packers do this and that the players genuinely enjoy it. I shared a few pictures with Josiah’s wife and she replied “Josiah said he had the best day!”

We got Charlie an ipad air pro for his birthday so the screen is larger. Through the TD Snap app, Charlie has been using it to communicate – kind of. It offers two choices and Charlie can touch the one he wants. His speech therapist has set some pretty ambitious goals for him moving forward centered around this ipad talker. That’s proof he’s doing good with it. He also loves using it to share messages to and from school. Charlie loves when we put silly messages. He’s definitely a little jokester and loves to laugh.

Several updated medical items:

Bone specialist: we saw a bone specialist in the renal department due to Charlie’s weak bones. She is starting him on a calcium/vitamin d supplement to take until we can retest his bone density in June. If his levels are still low we are to consider an infusion to build bone strength. Grandpa is currently in the same situation so we laugh that Charlie and Grandpa could get infusions together. Year ago when my grandpa was still alive. We visited family in Ohio and we forgot one of Charlie’s medicated eye drops. Well… good thing my grandpa used the same one! Another way to build bone strength is to use muscles so we’re trying our best to get him in the stander and do belly time.

Back Surgery: Charlie has his next back surgery (scoliosis rod lengthening) this month. He will also undergo his annual eye exam under anesthesia to check placement of the drainage tube in his right eye due to glaucoma. Plus the surgeon will check glaucoma pressures and cataracts.

Hip Surgery: Charlie’s hip surgery is in February and it now involves both hips. Initially the plan was right hip only because that hip is about 90% dislocated; however, the left hip is now around 45% which means he will eventually need surgery so the surgeon said if he does it now then it’s one recovery as opposed to one now and another down the road. We are dreading recovery so it makes sense to me. Charlie will be in a spica cast for six weeks. It’s not an actual cast. It’s more of a brace like you’d wear if you tore your ACL, but this goes across his stomach and has a bar in between the legs to keep them spread apart and stable. My understanding of the surgery entails cutting a section of the femur bone and physically putting the hip back into the socket. The socket is supposed to be curved – in order to hold the hip in place; however, the surgeon said in this situation the socket starts to shift to be up and down as opposed to curved. If it’s too up and down – he will need to cut part of the pelvic bone to force it into a curved position in order to get the hip in there. He’s “really hoping” he doesn’t have to do that and will do his best not to unless necessary but he won’t know until he gets in there. Sounds like that is more painful than the other procedure. So… please pray that the hip socket is stable and doesn’t need additional surgical intervention.

Dermatology: I mentioned before that Charlie tested positive for “dermal sclerosis compatible with morphea” – it’s the shiny looking skin rash that comes and goes from Charlie’s chest. We have since been able to confirm that the rash, which is called scleroderma (aka systemic sclerosis), is directly linked to Charlie’s ATAD3A mutation. While Charlie’s genetic syndrome, Harel-Yoon/ATAD3A, is new and little information is known – there is one medical article connecting scleroderma to the mutation. The concern with this rash is that this scleroderma can harden/tighten the skin so much that it can be hard to move and it can impact internal organs such as the heart and Charlie’s digestive/respirator tracts. We aren’t even close to that now…. and pray it never gets to that. However, in talking with dermatology and genetics – it appears there could be a targeted therapy Charlie could try if it does get to be bad. Obviously it comes with lots of serious side effects so it’s not a perfect solution, but could be an option moving forward.

GI: Charlie is now over 40lbs! He was stuck at 38lbs for several years. Now he’s just a growing boy. At our GI visit in September Charlie was 42lbs. I think he’s now closer to 44lbs.

Thyroid: Charlie’s thyroid has been on a roller coaster ride switching from hyperthyoidism to hypothyroidisim but I think we’re almost in a good place. We’ll get more labwork during Charlie’s next surgery. This could be contributing to the weight increase.

Cardiology: Charlie saw cardiology and had an echo to check his heart. Everything looked good, but his heart rate continued to be a bit high. Again, the thyroid could be impacting that. For now we plan to stay off medication to see if it will balance out on its own.

Dental: While we brush Charlie’s teeth daily, he has A LOT of tartar and plaque buildup. I’m told that we can brush 8x a day but there will still be a lot of buildup because Charlie doesn’t eat. He’s been on the waiting list to see dental at Children’s Wisconsin for 1.5yrs and still no word… I was told it’s a looong list and I guess they were right. We saw our local dentist this month and they’re now noticing recession in front of his front two bottom teeth likely due to Charlie always pushing the teeth with his tongue. SEeing a dental specialist will be nice to remove plaque, get x-rays and see what to do about losing teeth. OUr concern is Charlie losing a tooth, swallowing it and going straight into his lungs.

Beyond the Syble Hopp golf outing, I have been busy with other charitable events. Charlie was asked to be the guest of honor at the 13th Annual Dairy Care Wisconsin garden party. If you’re unfamiliar you should click the link to watch the news story I did ahead of it. Charlie got all dressed up and we shared his story in front of 500 people. Charlie used his talker at the end to say a few words and he LOVED it.

He was real touch and go during the event but when we got on stage he turned it on… he must get that from his mom 🙂 The event raised $455,000 for Children’s Wisconsin!

I emceed another Children’s Wisconsin event in November in Ledgeview: Gather for Good. This event raised $122,000. In the event’s 28 year history, that is the second highest they have raised.

My mom visited for the Dairy Cares event. Then she and Jerry returned in October to spend a little time with us. Charlie just LOVES having her here.

Charlie was Elliott from E.T. for Halloween and rocked his costume. Uncle Jeff even came to visit and attend a couple of Halloween events with us – which Charlie loved!

Charlie’s friend Piper – from horseback riding brought him a special gift. So sweet! He absolutely loves her and she motivates him to work hard. He’s even said “Piper” with his voice.

My dad came for Thanksgiving. He hadn’t been to WI in 6yrs. We’ve seen him in Ohio but nice to have him at our home. Speaking of Thanksgiving week… it was a challenging one. I had just survived three months of Al hunting. Granted, Al only hunts on weekends and not every weekend so it’s not that serious BUT I do my best to manage our schedules so he CAN hunt – he absolutely loves it. “Our” hunting land is about 45min away and he stays overnight if possible in the cabin. The added challenge is that we have been short staffed at work so I’ve been working several Saturday/Sunday mornings since mid-July. Here’s a breakdown of my Thanksgiving week – which nearly made me go insane! On Monday, I got a call from the renal department instructing Charlie to get labwork and a urine test BEFORE his appointment in one week. Ok, well, it’s Thanksgiving week so that gives us Tuesday or Wednesday. So Charlie and I went to the Appleton clinic before picking up my dad from the airport for labs and for me to tape a bag around Charlie so he pees inside it. That sounds promising, right?! We go to the airport and he screamed nearly the entire time while waiting inside for my dad. I tried everything, nothing worked. My dad arrives. I check Charlie’s bag and still no pee so I said – we’re not going anywhere until he goes! So I pushed a bunch of water through his g-tube. Finally he peed. Great! Only problem is 90% is on his diaper and pants. So I change him and put the tiny bit of urine in the container and tape another bag onto Charlie so hopefully he’ll go more on our drive back to Children’s. He did.. once again we’re looking at 90/10 but it was enough. Wednesday, we had to leave at 8:30AM for horseback riding for Charlie. At 8:35AM my dad is asking for toothpaste and shaving cream. We survived horseback but then my dad lost his phone. We found it in a place in the van I didn’t know was possible. We go to breakfast and then to Walgreens where I knew my blood pressure would skyrocket. I had waited a couple days for Charlie’s omeprazole. Even called Tuesday to ensure I can get it Wednesday. They said yes. I show up to find out “we are no longer allowed to administer omeprazole because we now have konvomep as an alternative.” I said ok, give me that. “We can’t because your insurance doesn’t cover it. We need prior authorization and that can take months.” 1. thanks for the heads up – since I gave Charlie his last omeprazole dose that morning and he’s due in a few hours 2. great timing – as tomorrow is Thanksgiving and everything is closed Thursday and likely Friday. I called Charlie’s medical team at Children’s WI in a panic. Long story short they were able to find a pharmacy about 30min away to get it for us that night. Around 4PM it was available so my dad and I drove the 30min there, I waited in a line 20 people deep, while my dad stood outside and smoked. I came out with the medication to see my dad chasing me down because he locked us out of the vehicle. He didn’t actually lock us out-out but the doors wouldn’t open. We eventually got in and made it home exhausted. We had a nice Thanksgiving and on Black Friday- my dad, Bo, Charlie and I rang bells at the mall for the Salvation Army. By the time I dropped him at the airport Saturday I was spent but had a friends party that night and worked Sunday morning.

Summer 2015 in Whitefish Bay & 2023 in De Pere

Earlier this summer, Al and I celebrated our 10th wedding anniversary. We had a nice golf getaway at Sand Valley – about 2hrs from Green Bay. My heart was always set on Turks & Caicos but our days of going on a 7-day long vacation are over. We can’t leave Charlie that long and be that far away. Still, we had an amazing time and that’s what matters.

We also realized that our days of traveling via plane with Charlie are over. I wanted desperately to take Charlie by myself to Vegas to visit my mom. I figured I could survive the flight with help from strangers getting on/off the plane. Plus, Charlie loves being around people so he’s good at the airport/on the airplane. But we need a wheelchair van. While a bit pricey, it’s doable. But then I realized he has no where to sit. We are not going to leave him in his wheelchair all week, nor will I wheel his dirty wheels all over her house. He’s also too old to lay on the floor like a baby. It’s just too much! So if we can drive, we’ll do it but flying is unlikely. Thankfully my mom planned a summer trip to Ohio this summer and my sister and family are flying to see us after the holidays.

I’d be remiss if I didn’t share something that disappoints me about Charlie and other kids. Charlie cannot play like other kids, but he LOVES being around them. So I try to make plans with friends and their kids. I have learned over the years that while he wants to be with them, they don’t want to be with him. I get it.. they’re kids. Why would they want to talk to another kid who can’t talk or play? Why would they want to take the time and effort to physically move Charlie’s hand to play a game with them? My disappointment is with the adults. While I don’t expect adults to force their kids to play with my son, it would be nice if they taught their kids how to accept and play with ALL kids – not just force them to “say hi to Charlie.” We are in this world of: inclusion – be kind – acceptance. I see it plastered all over social media. But often those shouting “BE KIND” from the rooftops are some of the same people participating in political fights on Facebook and justifying their behavior by … well.. my daughter “played” with the kid in the wheelchair. When really “play” meant- mom made her say hi. I am sure it is simply lack of awareness. I am thinking that maybe I should write a blog post on this with examples of how to include special-needs kids. I can think of a few friends who have done a really good job including Charlie. Last year a friend had her two or three-year-old daughter show Charlie her toys for a good hour. She was shy at first but once she felt more comfortable she had fun and of course so did Charlie. Another friend had her daughter and daughter’s friend read books to Charlie. And we see another family at the pool. Not only do their kids always come up and say hi to Charlie unsolicited, but the mom and daughter played their silly water games next to Charlie so that he could feel included. Al and I have even talked about moving out of the neighborhood we live in because – the neighbor kids don’t play with Charlie, and that’s why we moved here. We don’t plan on moving but the subject came up when we saw a house for sale that had lots of land and in the woods.

Back to the headline: we all need a break. Moms are guilty of putting everyone else first and themselves last. I’m mad at myself for not planning something for me post-hunting but that’s on me. I did book a trip to visit my mom coming up- by myself – and hopefully that will be the break I desperately deserve and need.

Specific prayers include 1. A successful eye procedure and scoliosis surgery. We pray for a fast recovery with little to no muscle spasms. And we pray that the protruding rod continues to stay put. 2. Pray for continued hip stability 3. Pray for less stressful days ahead 4. Pray for continued support from those around us 5. Pray for a successful audiology test coming later this month along with no new skin rash issues and 6. Please pray for continued happiness for Charlie!