Hannah and her sister went outside to rake leaves this morning.

We are still giving her the daily shot. Hopefully things are getting back to normal.

Mom gave the third shot today.

Little sister “R” was present for this round.

“R” was beside herself, and stunned that “Mom stabbed sissy”.

Hannah was very brave and was quick to tell her sissy that she needed that bandaid!

Mom and Dad sent Hannah back to school today with a bunch of doctor letters and pamphlets for her teachers and school nurse to look at.

Hopefully we are on the road to recovery now.

Dad delivered the second dose this morning.

Since this was the second dose, we were a little nervous that she would have that “Second Dose Reaction” like the scare we had in the hospital.

But we had no reaction today and was a good day!

We are finally home and it’s time to start the new Anakinra shot routine.

Mom stepped up first to deliver the first dose.

Today begins the second infusion treatment for Hannah.

We went to the outpatient infusion clinic at Children’s Mercy Hospital in Kansas City.

Hannah was given a choice between watching a movie, cable TV, playing with the Wii or playing with an iPad that the hospital provided.

Of course she chose the iPad and she is having so much fun that she doesn’t even talk to the nurses when they come in she is too busy playing games and reading books.

No kid really likes to have an IV. They gave her the choice of using a little vibrating thing or the cold spray. She chose both. She was very surprised that the IV went in so quickly and painlessly. They drew some blood to make sure everything was safe to do the infusion today.

The bloodwork came back OK so they started her first with Benadryl and Tylenol as “pre-meds” to help prevent any reaction to the infusion. The nurse said that that they were looking at 2 inflammation markers in the blood. One was elevated, the other was lower than when Hannah was here last..

Hannah thinks the Benadryl is “sour” so they gave her some apple juice.

They ran the tocilizumab for about 10 minutes and Hannah started coughing like she had a tickle in her throat … then said she was having trouble breathing and threw up a few times.

They discontinued the infusion and Hannah started shivering. They thought it may be a reaction so they gave her a steroid infusion and IV Benadryl.

She settled down a little and fell asleep.

The Dr. didn’t feel comfortable with the treatment and ordered the infusion stopped.

After a couple hours, Hannah perked up and started eating her “complimentary” lunch.

The Doctor came in and said sometimes the body can react to the second treatment this way. They began the process for us to get a new prescription.  This time for Anakinra. Anakinra is to be given by injection every day. (And its not very cheap either.)

We went up to the rhumatology depertment to get trained on how to properly administer the new medication.

What a whirlwind day! We are exhausted.