A Changed Mindset

There are times in your life when you experience a change and it opens your eyes a little wider. It can be a new job – experiencing a new world of personalities and people. It can be marriage or a new baby, a medical change, something tragic or something that’s just different. These changes change you. You hear words that others don’t hear. You focus on moments that many probably didn’t even notice. Sometimes it changes who you are as a person. And sometimes it changes your mindset. Change can be good.

Sound asleep on my lap ❤️

I have always said that Charlie has changed who I am, for the better. At least I like to think it’s changed me for the better. Some might disagree. What matters to many, doesn’t matter to me. I have less tolerance for a lot of things and some people. I say more of how I feel (within reason) and hold firm on what matters to me. I am more direct and I’ve become better with not everyone liking me. I believe in mutual respect. I notice who asks about Charlie and who doesn’t. Part of it could be the chip that I have on my shoulder still mourning the child(ren) I thought I would have right now. Another part could be that I’m almost always on edge – prepared to leap from 0 to 60 at any moment. You have to as a special needs parent or as any caregiver for that matter. You deal with so much… stuff dail7z My mind is always on my child.

My interpretation of daily conversations are different from many people. Years ago I asked a pregnant colleague “do you want a boy or a girl” to which she responded “we don’t care as long as it’s healthy.” I wanted to reply “ok, so what if it’s not healthy?” but I just smiled, after all I set myself up for that. At a friend’s baby shower – she was asked how many kids she wanted. She replied “two healthy babies.” There were probably 75 guests and I’m almost certain no one else heard what I heard. Obviously she didn’t mean any disrespect and I don’t begrudge her. It’s just a whole new mindset. A changed mindset.

Top pic: my baby shower Feb. 2015 Bottom pic: Feb. 2023 – 8yrs later… we all happened to be back at the same place together

Charlie has been crying more than usual. It started 9 days ago. It’s mentally exhausting. Charlie has had a few overnights of bad coughing. It’s physically exhausting. Charlie’s coughing is like a roller coaster. He coughs 24/7 with some days better than others. We had a few weeks in January where the coughing was pretty bad then suddenly – better. Charlie’s pulmonologist says the same thing every time – Charlie’s low muscle tone doesn’t move secretions. The secretions get thick, stuck and hard to move. We have every medical device possible to help, but nothing is a magic bullet. Fussiness began last weekend. Charlie woke up as happy as ever – like he always does. A few minutes into his morning routine he started crying… and crying and crying. I assumed he needed to cough so I pulled out all my tricks – nope. Finally I told him that I was going to leave him on the floor to cry alone until Al was done getting ready and could take over. He was better for Al, but still random crying. It continued that afternoon for grandma and grandpa. Same thing before school Monday. Sounds like he was fine at school but after school he cried for me pretty much from 3-6PM. He can’t tell us what’s wrong so we have no idea. We had started weaning him off omeprazole since he’s been on it for nearly 8 years straight. I don’t know if it’s related but Al and I decided to resume his standard dose. Charlie was completely fine and happy Tuesday. He slept great overnight. Whew… I could relax, no more of my own tears from the stress, until Wednesday night. He cried during our entire bath and after bath. Al had to be in Milwaukee so a caregiver came to help. Charlie was better for her but still cried more than I thought. He did well overnight however; she texted the next morning saying “he slept pretty good last night. He woke up once but fell back asleep after I helped him get some coughs out. All smiles this morning.” This past weekend was better but he’s definitely moody. He’ll be fine then hardcore crying. We stopped by the mall after school yesterday. Charlie loves walking around the mall. We stopped in a store so I could look at bedding and he was screaming -even when some nice ladies tried to talk to him – nope, he screamed. I picked him up. Vented him. Tried to get coughs out. After 5 minutes of making a scene we left and as soon as we hit the main mall area … he was fine. So now I’m wondering if it’s him saying “I don’t want to look at sheets, I want to people watch!” I talked with school and he’s doing similar stuff… crying when they have to gather around the table and work but when they wheel him toward the door to go for a walk, he stops. The question is how do you parent this? It must be tough for him not being able to communicate what he wants and doesn’t want. But he’s also smart enough to know how to get his way!

Watching for deer with grandpa

Grandpa, Charlie and I had a full day of doctors’ appointments almost two weeks ago.

Orthopedics: We saw Charlie’s orthopedic surgeon who oversees his hips/feet. As I mentioned in the last blog, Charlie’s feet push outward so badly that the bone is protruding through the skin and he’s not tolerating his braces. The surgeon said that his muscles that are pulling his feet inward are so tight that it’s uncomfortable. He recommended botox to loose the muscles but Charlie’s neurologist is adamantly opposed to using botox based on Charlie’s neuromuscular condition. We are trying to prolong surgery because if it’s done now than Charlie will need to have it again in a few years. We agreed to get Charlie fitted for new braces to accommodate the bone that’s protruding and other issues. Unfortunately there are not many orthotists in our area who come highly recommended so we are using an orthotist who drives up from Milwaukee 2x a month. Needless to say he has a full schedule so we can’t get in until mid-March.

Labs: Charlie got blood drawn for thyroid labs. If you recall, we’ve had issues with his grave’s disease and hashimoto’s disease.. leaning more hyper versus hypo. We resumed medication, even doubled it, but it doesn’t seem to be working. We will continue this regimen and hope things start to get better.

Heart Monitor: Charlie wore a 24-hour heart monitor. His heart rate has been high for him. We believe it’s related to his hyperthyroidism but cardiology recommended a heart monitor to be safe. This was posted in his MyChart account:
Heart rate ranged from 104-174, average 136 bpm
Heart rate variability was normal for age

Neurology: Not much to report other than we are keeping things as is. Charlie is on valium for startle episodes, which stopped once we started the medication. He still has some various jerking motions but grateful the scary episodes have stopped.

PMR: we agreed to stop baclofen, which was used to relax Charlie’s muscles. Charlie’s legs are tight and sometimes hard to bend which is why we started it but Charlie has seemed much more loose lately. Plus his head control has worsened over the last year. His physical therapist thinks it happened after Charlie had RSV and was very, very sick. Grandpa and I think it started after adding valium on top of baclofen to Charlie’s medication regimen. We stopped baclofen and hoping we can stay off. He seems a bit tighter, but nothing significant. PMR also assists with equipment. We have been wanting a high chair/activity chair with wheels for grandpa’s house. We have been battling primary insurance and medicaid for the last 6mos to get it covered. Their argument is … Charlie has a wheelchair so why would he need something else?! It’s insane. I said “we don’t wear shoes in our house so why would I wheel Charlie’s muddy/dirty wheels all over our carpet and floors?” obviously that’s not a valid medical-related answer but I also argued that Charlie deserves to have a chair that can move up and down to join us at the dinner table. Needless to say we were denied. Thankfully there’s a county program that will often cover necessary items not covered by insurance, but there’s a cost with it. Al and I pay about $1,000 a month in cost share which is based on usage. It’s not a problem, we still greatly benefit – but that is why we try to limit what we get via county because it does come out of our pocket for items that Charlie needs.

Scoliosis/Orthopedics: I had some concerns about the scoliosis rod on the right side of Charlie’s back. It’s been protruding through the skin more than usual. I sent a few pics to our orthopedics team. They said that the rod appears fine but the incision is a bit concerning. We’ve had a few issues with this over the past few weeks. We are now covering it with gauze and tegaderm and it’s looking ok.

Complex Care: we met with our amazing special needs/complex care team via zoom. They are like a pediatrician who oversees ALL of Charlie’s care. They assist and guide me through everything. It’s the most amazing program offered at Children’s Wisconsin. Speaking of tegaderm… after Charlie’s back surgery we were instructed to change Charlie’s bandages a few times before his postsurgery appointment when they remove the bandages and stitches. They sent us home with some gauze and tegaderm. We quickly learned that it wasn’t nearly enough so I ran to the local pharmacy and bought more. $100 later .. I mean, who knew medical tape was SO expensive?! I asked them about tegaderm and they were able to get Charlie a prescription and get the gauze and tegaderm covered by insurance. They also helped us get vitamins covered via county program I just referred to. I bring this up because it was A LOT of work. I cannot tell you how much time and effort was used for $25 a month.

Ophthalmology: Charlie’s annual eye exam went well. Glaucoma levels were stable. Wow have we come a long way in that regard. Ever since Charlie got his second drainage tube inserted into his right eye, things are good. Charlie’s prescription hasn’t changed much either. I believe he’s still around -16 in his left eye and 1 in his right. The right eye used to be the problem eye with a -21 prescription but he had cataract surgery with lens implantation which changed his prescription.

Since I was on the money-saving kick, I read that individuals who have medicaid can qualify for an amazon prime membership at half the cost, plus you can get up to $30 off your internet bill a month. I did the work and was able to make that happen. I can’t believe that I just learned of that now. Very proud of myself!

If you follow me on facebook, you saw that Charlie went snow skiing! I was in tears. He saw things he’s never seen and actually did something other kids his age was doing. I thought that he would like it and want to go once or twice down the hill BUT he absolutely loved it! He was all smiles on the chair lift. He was all smiles the entire time. Whenever you ask him about it, he smiles. We just did it for a second time this past weekend. Thank goodness for nonprofits like Moving Mountains and the generous and selfless volunteers.

My rant of the last few months is handicapped parking. I don’t understand how many times we visit Costco, there are 0 handicapped spots available. How is it that someone can walk a 150,000 square foot warehouse but can’t park a few spots further? The night I had to park in a regular spot, leave Charlie and Bo in the parking lane while I backed out to get the wheelchair ramp down, I did see three older people in power wheelchairs so clearly they need the spots. But the man who was sitting in his truck in a handicapped spot waiting for someone to come out and jump in did not need to be there. How is it that so many people are so clueless and selfish? I am fine walking a further distance but we need the space to get the wheelchair ramp down. Same thing happened at the mall this week. All four handicapped spots were taken. I watched two of the drivers walk out with shopping bags and get into their respective vehicles – no problem.

It goes back to that changed mindset – my tolerance has dropped for arrogance, selfishness and rudeness. I am now very aware.

I feel like I notice more of the food in people than ever before. I have a neighbor who is the most selfless person I know. She and her husband have been fostering kids on top of raising their own. Despite being overwhelmed I can always call and ask her to send a kid or two over to play with charlie. She did recently and he was SO EXCITED!

Charlie’s school has hosted a golf outing for the last 28 years. The person who organized it for the last 10 wants to step back. After multiple no’s – I relented. Thankfully a friend and fellow mom agreed to co-organize the event with me. We are in the beginning stages and completely overwhelmed but just like everything else… it will all work out. That said – mark your calendars for Saturday, July 8 for a 9-hole golf outing to support Syble Hopp School. If you don’t golf, come volunteer!

Charlie turns 8 in just a couple of weeks! Until the next blog- here are a few prayers that are greatly appreciated: pray that Charlie’s mood swings… or sudden pain/discomfort… ends because it’s so hard not knowing why he’s crying, pray that we’re able to prolong surgery by getting solid braces for his feet, pray that he continues to remain healthy through this winter season as we’re so close to spring, pray that his thyroid stabilizes and pray for Al and me to remain strong, happy and healthy. I thank God everyday for Charlie and especially Al.

My boys