Summer Smiles

We are in the midst of summer and Charlie is loving it!

Before school let out Charlie and his class went on several field trips including the N.E.W. Zoo & going fishing. While that’s very exciting, he was even more excited that grandpa went along as a chaperone.

As much as he loves school, he also loves camp. Charlie is attending Paragon (camp) Monday – Friday. They often go on field trips – zoo, children’s museum, sports parks, playgrounds, library storytime. He loves the girls who care for him and they love him. The kids also seem to love Charlie. If you know Charlie, you know he startles easily. If you laugh too loud, if you drop something… he jumps every single time. I’m told a fellow camper yells often which makes Charlie startle so another camper will say “stop doing that, you’re scaring Charlie!”

The Miracle League baseball season kicked off 48 hours after Charlie’s most recent scoliosis rod lengthening surgery. Al has always been Charlie’s “buddy” and Charlie has enjoyed baseball but he seems to LOVE it this year now that this cute, young, sweet girl is his buddy. He just loves her! Charlie’s also happy that his little girlfriend Braylie is on his team this year and that he gets to see his friend Joey too. Joey’s dad and Charlie’s dad are best buddies from high school.

Al had plans with his high school friends that day so after baseball charlie and I went to Titletown for an afternoon of kids activities- this was before the free Flo Rida concert & we made this adorable bookmark for Father’s Day.

Charlie had scoliosis rod lengthening surgery on June 1st. He did the best he’s ever done coming out of anesthesia. He was still crying and moaning awhile during recovery. His ICU nurse gave morphine but when that didn’t work I recommended diazepam/valium because he’s often hurting from muscle spasms more than pain. Once he got that he fell asleep then woke up his typical Charlie self. We spent one night in ICU then home the next afternoon. The one issue is the rod protruding through Charlie’s back. The top right rod has become more pronounced, as I mentioned before. Both Charlie’s physician’s assistant and surgeon said the rod is secure so we shouldn’t worry but if it comes through the skin to call. I about passed out. I already can’t look at this. I don’t think it bothers Charlie but I don’t know. The surgeon said he looked closely during the latest procedure & he doesn’t want to move it unless necessary because there are only so many ribs to attach the rods to and he doesn’t want to burn through them too quickly. Please pray the rod stays in place until his next surgery in December.

Speaking of surgery, we learned that Charlie cannot have back surgery and hip surgery at the same time – which I figured. The cast Charlie will use post-hip surgery goes up pretty high and would cover the bandages from back surgery. It’s also important to remember that these are both big surgeries – not a scope or eye exam which are more easy to coordinate on the same day. Charlie will have hip surgery in February.

We had a full day of doctors’ appointments last week including a bone density exam. I’m told that kids who cannot walk often have low bone density. The nurse practitioner who oversees his care at Children’s Wisconsin wanted an exam for a baseline. Unfortunately his bone density was lower than I expected or I think they expected. This is what I gathered from MyChart: “the bone mineral density as determined by the left hip technique is 3.3 standard deviations below the normal mean.” I could be wrong but I think 0-2 below is osteopenia & 2 or lower is osteoporosis. We got a referral to see a metabolic bone specialist to see if Charlie should get treatment before hip surgery. I’m waiting to schedule that. My understanding is that Charlie could get an infusion every 6 months, if necessary. For those unaware, if you have low bone density you can suffer fractures and broken bones more easily. The bad news never ends for this poor little guy.

Charlie got a bite or a sting on his right hand a couple of weeks ago and his hand swelled up so much so that we couldn’t even feel a bump. A few years back a similar situation happened so I took him to the ER because I didn’t know if he broke a bone and we didn’t know it. Once the swelling went down, we felt 3 little bites. This time we gave him benadryl and watched him. Once the swelling went down we felt one little bump but it looked like this. I have no idea what it is. I thought maybe a bee sting and the stinger is still stuck inside but his nurse practitioner doesn’t think so. We had her look when we visited Children’s last week. If only he could say – I got stung or a mosquito got me.

We spent Memorial Day at my friend’s house with her kids and some neighborhood kids. Thanks to them Charlie participated in his first ever lemonade stand. It’s pretty obvious that he loved it! And I love the fact that he was able to do something other kids his age do.

Beyond Charlie stuff – I have been busy. I participated in a “celebrity” golf outing at Butte des Morts Country Club benefitting Children’s Wisconsin. Thankfully I was paired with two of the most lovely, caring couples.

I’m in the 11th hour of Syble Hopp’s 29th Annual Golf Outing. It’s two weeks away and while it’s been overwhelming, it has been fun and we have a great team. The Syble Hopp moms on the committee have made it fun and less stressful. We spent a night last week putting raffle baskets together and finalizing details. We sold 202 of the 216 golf tickets. There’s still time to sign up and play 🙂

Between doctors’ appointments, a few new medical diagnoses, work and all these golf events – I testified in criminal court case.

If you’ve followed this blog for awhile then you’ll remember I post I shared a few years ago about being involved in a stalking case. It happened early November 2020 when a man in his mid to late 20s was driving through neighborhoods in town following teenage girls. He followed me down a trail – which is how I am involved. The case finally went to trial last month and I had to testify along with 8 or 9 other witnesses for the prosecution. It was much more stressful, nerve wracking and emotional than I expected. Here’s the full story for those interested: it was an unusually warm November day in 2020 I took Bo for a walk wearing yoga pants, tank top and light jacket. As we walked down the driveway a man in a silver saab drove past the house, I waved. He looked but didn’t wave back. I started walking the other direction. About a minute later a car was driving slowly behind me down a cul-de-sac, I turned to look and it was him. He parked in the cul-de-sac and watched me walk down a trail. I watched him for a little while curious what he was doing then decided that I would walk Bo to the end of the trail and turn around – as opposed to take the full 30 minute walk – because I was concerned as to what he was doing. After I turned around, walking back toward home alone on the trail, the man in the car was now walking very fast toward me. It caught me off guard and I was nervous because in the 7 years I’ve lived here no one has ever parked and walked on that trail. The sole purpose of the trail is to connect two neighborhood streets. Once he got close he stopped and nervously asked “hi, hi, how are you?” I kept walking and made it to the main street. A few minutes passed and again I heard a car coming behind me, it was the man driving past. I took his license plate and held onto it. A week later, a neighbor sent a text message to the neighborhood warning us of a man in a silver Saab reportedly following, approaching and taking pictures of teenage girls. I called police, did a lineup and wrote a report of my incident. The district attorneys office filed four counts of stalking. He was initially arrested for violating his probation – on probation for another sex related crime. I speak for a living yet when I went to court to share my story in front of a jury – I was beyond nervous. As I reported on the stand, in the moment on the trail I felt uncomfortable, and in my gut… knew something wasn’t right once this guy parked in the cul de sac and watched me walk down the trail. When he came walking toward me on the trail I was caught off guard and a bit nervous but I am way more bothered today than I was then. Lots of “what ifs” go through your mind. It could be because not long after this happened to me- 10 minutes away on a so-called safe trail near grandpas house, a woman was attacked while walking with her newborn baby. It happened in broad daylight. It’s a miracle that she survived. This is a completely different suspect than the one I encountered but I bring it up because this incident opened my eyes as to how naive I was a few years ago and you must always be alert. In my encounter on the trail, I am unsure of the man’s intentions were- if any- but I believe he walked down that trail only to follow me. I suspect that he thought I was younger than I actually am because he first saw me from a far. And the other three incidents involved teenage girls. I never heard the other girls stories. All I know is the jury convicted him on two of the four stalking charges- including mine and another one. He will be sentenced in July.

Must have gone to voicemail 😦

To end, I have to say how funny Charlie is. You all know that he’s obsessed with the phone. Tonight I was giving him a bath when my phone rang in the other room. Charlie got all excited but on the 4th or 5th ring he realized I wasn’t getting it. He started screaming. He screamed until bath ended, we got out and I returned my dads call. He was smiling as it rang but it kept ringing … this is when Al & I usually panic… it went to voicemail. The screaming resumed. But a minute later- saved by the ring. He called back & then charlie was all smiles and laughs as my dad complained about the challenge of getting a new cell phone & using bad language. For a kid who doesn’t talk – he’s the most social boy I know!

Please pray for Charlie’s continued happiness, an increase in his bone health, lots of phone calls – preferably FaceTime 🙂