Hannah and her sister made a pine cone bird feeder project in the driveway this afternoon.
Hope you like it.
Travel was a success!
We made it back safely from Thanksgiving!
All our planning worked, the Anakinra stayed cool while we traveled.
We delivered the injections every morning, and tried to stay on schedule like we do during the week at home.
Hannah ran and played with her cousins at G-Grandpa’s house, you would never know she was diagnosed with Systemic Juvenile Idiopathic Arthritis (Systemic JIA) and literally bedridden a month ago. We stayed at the hotel and swam in the pool both Wednesday night and Thursday afternoon/evening while Mom and Dad enjoyed the hot tub. She jumped in the pool with her cousins for several hours on Thursday. It was like she was back to normal, just like before.
We are still glad to be back home!
Our first trip overnight
The holiday weekend travel was a challenge because we had to figure out a way to take Hannah’s medicine with us for Thanksgiving.
For those of you who know about Anakinra, you have to keep it refrigerated, so we were not sure how we were going to travel without a refrigerator in the van.
We ended up finding some toothbrush containers at Dollar Tree that were large enough to hold Hannah’s Anakinra shots. So we prepared several shots ahead of time to take with us.
We put the toothbrush containers inside a plastic Glad storage container, and set it on top of some frozen water bottles in a travel cooler. That should keep the medicine cool enough while we travel.
Getting our daily shot before our Dr. appointment
Heading back to Kansas City today for a follow-up appointment with Dr. Kessler.
Got checked into the Rheumatology Clinic and Hannah is prepared with “Pink Bear” and “Leppy”.
They drew blood today to make sure the daily shots are working properly.
The blood labs came back normal today!
Dr. Kessler said when we came in the first time, her arthritis blood count was 47, and normal is 0-13 … Hannah’s count today was 18.
Dr. Kessler said that we are going to start a schedule to reduce her daily Prednizone dose. Yea!
Mom and Dad were giving high-fives all the way back to Topeka!
Family Affair
Hannah’s daily shots are becoming more of a family event than just a daily shot.
Mom usually gets the hot wash rag ready. Hannah holds it on her arm and it feels “soooo good” … (her words)
Mom and dad take turns giving the shot each day and little sister always puts the band aid on just in time.
