Eight is Great

Our happy Charlie is now 8 years old! He LOVES celebrating his birthday and LOVES parties, like his mom.

Charlie seems to be more happy celebrating at school and with his family. Since Charlie cannot eat by mouth we don’t send treats to school, but rather I’ll buy a gift for each of his classmates, wrap them up and Charlie hands them out via his talker. He gets so excited buying presents for his friends and handing them out.

Charlie at Camp Paragon- he LOVES it there

His school party was Friday. Saturday, he had camp and they went to a St. Patrick’s Day parade in Sturgeon Bay. Charlie LOVES camp. He has it two Saturdays a month during the school year. Sunday was his actual birthday and he had a party at grandma and grandpa’s house with family. I didn’t arrive until after 6:30PM so I missed most of the celebration. I feared that Charlie would be moody, as he typically is that time of night, but he was all smiles and happy. I asked Al for pics/videos of Charlie opening presents and singing Happy Birthday. He replied “we were enjoying the moments” hence no pictures.. LOL!

Proud to show off his new shirt 🍀

The reason I was late to Charlie’s birthday party is because I was in Las Vegas celebrating my mom’s birthday, which is the day before Charlie’s. His due date was ON my mom’s birthday but Charlie waited until 1:06AM the following day because he doesn’t like to share 🙂

As a gift to mom, my sister, brother and I visited her. We haven’t spent time together – just us, without our significant others/families – in a long time. It was nice to celebrate her and spend time together. But go figure my flight was delayed returning.

Charlie’s main caregiver – her daughter had a big surgery late January. She was supposed to be discharged after a few days. It ended up being a month. She’s doing much better now but has a long way to go. She’s such a sweet girl and could use extra prayers! While they were in the hospital we experienced a few snowstorms. School canceled at least 3 days. Those are the worst because I’m busier at work when we get a snowstorm. Not only do I not like snow days… Charlie doesn’t like them either. This picture from school makes Al and me laugh. We can envision Charlie’s teacher holding out a “yes” “no” button asking Charlie “do you want a snow day tomorrow?” as they push the “yes” closer to his hand… but we can picture him reaching way over the “yes” and hitting “no!”

Karen here did call the bus company the one day that Syble Hopp was the only school in the county to close… because there was a mention of the bus company saying the roads were too bad. I was confused how the roads were good enough for typical kids to get to school but not special needs kids. We had a nice conversation and they said it’s not the bus companies call to close school. I explained to him that with our kids.. you can’t just call the neighbor kid next door to come babysit. I need someone who can work a feeding pump and administer medication. He assured me that those factors go into the “suggestion” they give the school after driving the roads that morning and following the local news for crashes. I failed to share that I am the person who reports road conditions and traffic crashes LOL!

Thankfully I have some wonderful friends who offer helping entertain Charlie. We drove to my friend Michelle’s house and hung out with her and her sweet little girl whose not yet school age. Bo even came along and played with their golden. Then we went to my other friend’s house to sled in her backyard with her kids. By that time, Charlie wasn’t having it. I think he had enough of me for the day.

Charlie got fitted for new foot braces. As I mentioned in a few earlier blogs, his feet have turned so far outward that his braces don’t hold his feet in place but rather they rub and hurt. A great orthotists drives up to Green Bay from Milwaukee twice a month. He told us the best way to provide support without pain is to push his toes downward – as if standing on tippy toes. That will alleviate pressure on the inner bones. But he will need to create a built in wedge because you obviously cannot stand on your tippy toes. He said the downside to this is the fact that it’s nearly impossible to find shoes.

The thyroid is a crazy thing. Granted Charlie suffers from both hashimotos and graves but we have been battling Charlie’s thyroid since we discovered his hyperthyroidism got the best of him during regular labs in December. We took Charlie off his meds and he did well for several months then suddenly in December his TSH dropped indicating hyperthyroidism.

Here are recent TSH results. Normal range is 0.50 – 4.50

Since December it’s been quite a roller coaster. We resumed medication then we saw how low the levels continued to drop. We doubled medication but levels still dropped then suddenly this month – his levels skyrocketed into the other direction indicating hypothyroidism. Around the same time Charlie had developed a rash on his face and experienced lots of purple fingers and toes. I received lots of messages from Charlie’s teacher concerned about his purple hands. We thought it was connected to the sudden hypo spike. While the fingers and toes got better, the rash did not. I finally reached out to Charlie’s dermatologist and she called in an antibiotic Rx. Charlie has the best team of doctors at Children’s Wisconsin. It’s wonderful that I can send a message along with pictures and a few hours later have a prescription already fixing the issue.

Now as you see in Charlie’s most recent thyroid lab – he’s back to hyperthyroid. We have a great endocrinologist so hopefully we’ll stabilize this soon.

We had our 6mo GI follow up. Charlie had gotten to 40lbs but on this day he was 38lbs 5oz. The doctor understands that the hyperthyroidism could be part of the issue so he’s letting us continue with current feeds, not having to increase. Charlie’s been on omeprazole since he was a newborn. We tried to wean him off years ago but it didn’t go well. We tried again recently but that was around the time Charlie had been crying and crying – which isn’t like him. We aren’t sure if that’s connected but I talked with GI and we agreed to keep him on the medication.

Charlie had tried an eye gaze system at school in order to communicate. Eye gaze allows you to talk with your eyes. We unsuccessfully tried it years ago but tried it again recently. Unfortunately, it didn’t work again – it just doesn’t pick up his eyes. Not sure if it’s the thick glasses or the lack of a pupil in his right eye. Instead his school therapist is using a larger ipad (ipad pro 12.9 inch) and allows Charlie two options for choosing what he wants. He’s been doing ok with it. It doesn’t sound like it will be a perfect option but it’s better than nothing. The ipad is also great for Charlie for other reasons. Look at him playing music on it.

We bought Charlie his own large ipad for his birthday. A friend of ours sends Charlie a big check every year on his birthday. Every year we put it into Charlie’s account, but this year, it paid for most of the ipad – so thank you for this amazing gift 🙂

Charlie also got his own “zoomer chair” thanks to my mom, Jerry & Milwaukee friends. Now he can zoom around the house in this fitted chair that he loves… and it saves all of our backs!

We ordered Charlie new glasses. We have always gone to the same location and same person to order glasses since it can be complicated. Unfortunately our lady no longer works there! She did offer to meet us to make sure Charlie’s order went through ok but I said we would be fine. After 90 minutes, lots of Charlie screaming and lots of questions about previous orders… we got a pair ordered. Usually we get 1 regular pair and 1 pair of rx sunglasses but we kept it simple and went with the regular pair. Glasses is one area where medicaid does not do kids any favors. I’m glad I purchased vision insurance. Still – I think I have to pay about $200-$300 out of pocket because the frames were $15 over the cost allowed, they charge extra for a high prescription, extra for bifocal, extra for scratch resistant, extra for glare resistant. This was with us being able to pick out any frame on the wall. If you have medicaid only, you get to choose from a tiny box of about 6 crappy frames. It makes me sad for people who truly cannot afford glasses for their kids.

Syble Hopp’s 29th Annual Golf Outing is Saturday, July 8. If you remember, I’m helping organize this year’s event with another mom in Charlie’s class. It’s been a bit overwhelming but we make a good team and are off to a great start. We have most sponsorships filled and lots of foursomes already signed up… but we need more. If you golf – sign up HERE!

“I have yet to understand why it always rains hardest on those who need the sun” – a friend started a recent Facebook post this way. She is now the 3rd friend who has been kicked to the ground and in need of prayers. Her daughter suffers from a progressive genetic disease and now she (the mom) was diagnosed with an aggressive form of blood cancer. Her hands were already very full. My other friends husband died in November and now her daughter (a good friend of Charlies) has been very sick and in the ICU at childrens for over a week. Another friend who just adopted her 2 foster kids, on top of her own kids, is dealing with a serious and complicated health issue that will require surgery out of state. Please pray hard for the moms- the ones who need to remain powerful and strong to care for their special kids. And of course the dads to provide the support.

In closing please pray for our friends. Please pray for Charlie’s thyroid to stabilize, the new braces to provide the support he needs to prolong surgery and continued happiness.