Things have been pretty low key and normal for us since the last update. We’ve done lots of playing outside and inside. Mason came with to my last doctor’s appt and got to help find baby’s heart beat which he thought was really cool! So many warm days spent at Papa & Nana’s pool. Mason has gotten more and more confident in the water trying cannonballs and swimming to the steps. Our push mower broke after 8 years so we upgraded to a zero turn mower and I’m not sure who’s more excited! Mason didn’t love when it was on since it was loud, but loved watching Austin mow!
Today we went to IA City for his scheduled monthly appt. We got checked in and his buddy Nacho came right away to play! The famous duo is back in action! Masons brought him a pack of balls to play with. Mason struggled a little bit with getting his port accessed but it was a nurse from another floor practicing- which is always good but tough on your own kiddo. Since no planned meds they drew labs, heparin locked him, and deaccessed right away.
We went to an exam room for more playtime with Nacho while we waited. Shannon and the pharmacy resident came in to chat. We shared all of the good news that Mason has been doing much better in terms of nausea and puking since on Claritin. We said how Mason’s outbursts have been better as well. Mason occasionally feels crappy Mon/Tues after methotrexate and after talking with Dr. Mike & Dana that can happen with taking Bactrim close together. We are going to space out his Bactrim and see if that helps. We let them know that he starts back at daycare on the 24th and they provided us with some information to hand over regarding his care and any precautions.
Mason’s labs looked really good! Hemoglobin and platelets were perfect. His neutrophils should be in a range of 500-1500 and they were 796, couldn’t be more perfect! His IGG level was also normal so no need for immune boosting transfusion at this time. Hopefully his body helps keep that value up.
We met with Ms. Katie, the social worker, for a more in depth eval of Mason and his behaviors. We let her know everything has been much better in the past month but still talked through different ways to address his outbursts. We also worked on talking through his medical procedures at home while practicing on a doll or one of us and discuss how it makes him feel and reassure him with the negative symptoms. She was impressed with how Mason can voice his emotions and what he is feeling.
Overall Mason had a very good visit. We went down to pharmacy and got all of our refills for the next month and were on our way. We are in the 3rd month of a 3-month cycle that resets mid July. Our goal is to work on pill swallowing in the next month so the steroids go easier next month.
When we got home we took a nap while Austin worked. Even though it was a fairly easy visit it is still exhausting for us. Daba & Aunt Aly came into town and we all went out to hibachi for dinner. Mason loved pointing out the fire and trying to catch the eggs. Mason had a hard time taking his meds tonight but I think he was overtired. Hopefully no hospital visits for another month! 🤞🏼
