Update from Carissa:

We have made it through 2 big anniversaries.... December 15th marked 2 years since Ellie had a seizure, which launched a whirl-wind of events and major changes in Ellie's life (and ours). December 17th marked the 2 year Anniversary of us being Hospitalized at Children's Minnesota and also was the day that my Grandma Malone was welcomed at the gates of Heaven. 

I have been trying to write this update for a year now. I planned to write one at the one year mark last year, but every time I tried, I would cry. Things with Ellie were not at all where I wanted them to be, Ellie was very close to needing to be admitted last year, because of her concerning flare-up symptoms and regressions. It was not a lovely time in our life.

2023 has gone pretty smoothly for Ellie as far as having her infusions on time and no overnight Hospital stays. In December last year, Ellie got her first Rituximab infusion at home, which has made getting her infusions all on schedule so much easier! Now, her nurse has everything in her calendar and it has gone very smoothly. Every month, her nurse accesses her port, draws labs to check her kidney and liver function, then gets the IVIG running, which takes about 7 hours. Then she gets unhooked, but the port stays accessed and her nurse comes back the next day and we do it all again!

In July, Ellie and I went to Dallas, so that they could do a developmental evaluation with their psychologist. Ellie did very well and is at or above average in all areas, except one, where she needed to place pegs in a board. She didn't do that as fast as she should have, so they said it could be that she didn't understand being timed or it could be that her coordination and motor planning might be a little slow....but since that was the only test that showed that and all other motor and cognitive tests were great, they think it was just the timed part of it was the issue. 

This summer, Ellie turned 5 and had day 2 of her IVIG infusion....and for the first time, didn't cry when her port was accessed! She continued to do well with getting her port accessed, until the last 2 times, then she got upset..... but she has also not been feeling herself, so I think that played a big part in being able to regulate her emotions.

All year, she has gotten Rituximab every 3 months and her B cells had not repopulated early, until November. Then they had completely repopulated by the time she got her Rituximab infusion. I had been seeing lots of things happening that made me wonder if that was the case (her crying very easily, having issues with foods...only wanting to eat apples, not coming up with words she wants to use, not being ok with getting her port accessed, etc.) 

My big hope for December was that we would be able to talk to her doctor and cut the Rituximab infusions back to every 4 months, but that is not the case. Since her B cells repopulated early, the schedule will remain the same and the dose will be increased, to adjust for her growth and change in weight during the year. 

We are so thankful for Ellie's amazing medical team and how hard they work to keep her out of the Hospital! I still have moments where I wish that this didn't have to be her life, but I am so thankful for her health and her team! 

Thank you so much for all of your continued prayers! They mean the world to us! We all praise God for what he has done for her and ask Him for complete healing. 

Much Love,

Carissa

p.s. I attached a picture of Ellie, during her infusion, having a piece of dessert pizza from Mr. Gatti's.