The last couple days have been fun but exhausting with both kids home. We have done many activities, played games, played outside, made snow cones, and watched movies. And then today we had an appointment at St. Jude to get Caleb’s hearing aids and check his blood counts, but more on that in a minute…
The first day with the kids at home was a little rough. I could definitely tell Caleb had to adjust to Tyler being home, especially because he didn’t have my undivided attention. We snuck out to McDonald’s for play time and lunch and that definitely helped break up the day and calm them down. It was probably the last day for a little while that Caleb can go out and do something like that because I know his counts are dropping. I was the mom that showed up to McDonalds, whipped out my pack of anti-bacterial wipes and cleaned the entire table and seats before they sat down. I wiped Caleb’s hands every time he came back to the table, and we changed clothes immediately when we got home. It’s the best I can do to protect him but still let him be a kid sometimes. They had a blast playing so that is what matters most! Caleb almost fell asleep before we made it home and then took a long nap!
The second day (Thursday) I felt like we were in a good flow all being together. We played outside and played more games. When Caleb got tired he asked Tyler to rest in bed with him and Tyler offered to share his iPad so they could watch the same thing. It was so sweet and I’m so thankful they are best friends.
When Caleb woke up from his nap we made snow cones. This is one of Caleb’s favorite treats, but Tyler is rarely home when we make snow cones because he is usually at school. Tyler was extra excited and I think he put every single snow cone syrup we had on his ha ha!
Today (Friday) we had to go to St. Jude not only for a blood draw and count check, but also to get Caleb’s hearing aids. I was a little nervous about the appointment because we had prepared Caleb as much as possible and he was actually looking forward to it. We have been reading his book about the little Lion that gets hearing aids almost every night, so he was very ready to finally get his! I was so nervous that once he actually felt them in his ears he wouldn’t like them. But it was exactly the opposite! He couldn’t stop smiling all day and he didn’t ask to take them out until we got home and he was ready for nap time. Even the audiologist was thrilled with his reaction and we all couldn’t stop smiling because he was so happy.
I am extremely thankful that James was able to take off work today to be there for this appointment. We had to learn how to put the hearing aids in and how to care for them including changing the batteries, storing them in a special case, cleaning them, etc. Thankfully the audiologist already programmed them for us, and Caleb can’t change any of the settings on accident because she turned off all the buttons on the actual hearing aids. There is no on/off switch. They are on when the battery door is closed, and off when the battery door is open. We have to store them every night with the battery door open and in a jar of desiccant beads (beads that absorb moisture). They gave us plenty of extra batteries and an entire backpack full of different accessories. One of the coolest tools she gave us is a Stethoset. It is a tool that kind of looks like a stethoscope, but we can hook it to the end of Caleb’s hearing aid so we can hear what he is hearing. This helps us identify if there is any static sound, if the batteries are dead, or anything like that. We are supposed to take a listen every couple days just to make sure the sound is coming through clearly since little kids have a hard time noticing changes in quality. They also gave us a clip that hooks to the hearing aids just in case one falls out (that is the string you see in the pictures). The clip is hooked on his shirt so if one fell out it would just hang there instead of getting lost. They fit pretty snug so I don’t know how likely he’d be to lose one, but he is a 4 year old boy, so, things happen!
We were told that he should wear the hearing aids most waking hours of the day once he is used to them. This sounded like a lot to me, but based on how much he liked them today it now seems like no big deal. If he is bathing, swimming, or napping, then he has to take them out and has a different case to store them in. This is just like the case he saw in the book that we read so he was very proud to take them out and store them in his special case at nap time. He kept it right next to him at nap time.
On top of just the hearing aids we also opted to get the system called the Phonak Roger System. Phonak is the brand of his hearing aids and the Roger system is a microphone that helps amplify sound in different settings. It can do this in several ways. The Roger system is a small circle with 6 microphones all pointing in different directions. So for example if we are at a table in a loud restaurant we can place the Roger system on the table and turn on and off different microphones to control what is amplified. If James and I are sitting across the table from him we can just tap the circle to turn on the microphones pointed at us and turn the rest off so he doesn’t hear the noise from all around. Or if we are at a large table with many people all around us we can turn all 6 microphones on and voices from all directions would then be amplified. It’s pretty cool and we can’t wait to test that out. Additionally the Roger system comes with a clip so someone can wear it and then it works like a microphone that goes directly to his hearing aids. This will especially come in handy if he has trouble hearing at school. His teacher can wear the microphone and he will hear her voice directly in his hearing aids. And last but not least, the feature that Caleb was most excited about, is that it can be plugged in to any headphone jack so that his hearing aids basically turn into ear buds. We plugged it into his iPad for him and he loved it! We also used it with our TV when we got home and he was all smiles!
Our last appointments for the day were the usual blood draw and count check. We were happily surprised that his Hgb and Platelet levels were still up and he didn’t need any transfusions today. His ANC is down, which means we probably need to keep him in his safe and sanitized bubble at home this weekend. But for today his numbers felt like a win. We have to go back Tuesday to check counts again and if his numbers hold AND his ANC gets back up over 500 we’ll be admitted Tuesday evening for his LAST round of inpatient chemo! We were delayed a week at this point in Cycle 4 so we are trying not to get our hopes up, but knowing there is a chance we could be getting that huge milestone out of the way next week feels good. After that it’s just recovery until his counts come up enough to go home!!!
We are feeling great tonight! What we thought might be an emotional, tough day was once again made easy by the attitude of our Superhero. We are so thankful that St. Jude monitors so many things closely, including hearing. We would never have known from day to day interactions that Caleb had any trouble hearing. But based on his smiles today and his reactions to certain sounds I think he has been missing out on hearing some things around him. This will only become more important as we move home and get him back in school, etc. So tonight we are feeling grateful for this technology instead of looking at it as a down side of all that has happened. If Caleb is happy, we are happy.
I’ll leave you with a laugh… Nana and Grandpa (James’ mom and dad) sent the kids a little care package with all sorts of goodies, and in it were straw glasses. The kids just got such a kick out of the idea that they could drink their drink through glasses. They couldn’t wait to try them out and they looked HILARIOUS! These kids keep us on our toes, but they also keep us constantly laughing!
Such adorable little boys! Love reading your blog & seeing all of the pics! St Jude’s is the absolute best! Prayers that Caleb’s last chemo cycle goes smoothly! 🙏🏻🙏🏻🙏🏻
Thanking God for: awesome applied technology, seasoned and sensitive professionals to deliver it, and the positive approach and attitude of the entire Grimsley/Doherty/Vila families in handling all of this. I’m loving the pictures and updates. Praying and cheering for next week!
This was a great story!!!!!!❤️❤️❤️❤️Luv u all!!!!!