Overdue Update!

Lots has happened in the past few months…lots of exciting things!

First, the Nationwide Children’s Hospital Columbus Marathon & Half Marathon:  what an incredible experience!!!  I have never experienced such emotions as I did on that day.  The race was unbelievable with runners from all over the world high-fiving Megan and telling her that she was their hero.  What a day!  The days leading up to the marathon were super fun too!  Katelyn got to dress up in the unicorn costume and be on the news with Dom Tiberi.  Megan and I did an interview for the hospital telethon and helped to raise some money.  Megan’s school did a fundraiser day (Unicorn Katelyn made an appearance there too!) and the students created butterflies in art to hang in the windows of the school to celebrate Megan.  All-in-all we raised $12,000 for Nationwide Children’s Hospital–thanks to Ross’ Granville Market, Eat Up!, and an incredible donation from Rheumatology Daddy’s work-Huntington Bank!

megans class and unicorn

megan vein viewerIn October and November, we had a rough time finding a good vein for Megan’s Actemra infusions (her GO juice that keeps her joints under control).  We had to break out all the gadgets and in November, it took two nurses and three attempts to find a place for her IV.  She was a trooper, but NOT a happy camper about the whole thing.  We are going to hydrate, hydrate, and hydrate some more before her December infusion to hopefully help a little.  The main issue is that she only has two good veins–one in each hand.  We’ve used these veins at least once a month for over 6 years, so they are tired.  😦

 

Late November brought the dreaded (also anticipated) TMJ MRI.  In March of this year, Megan’s jaw MRI showed significant worsening of the left TMJ, including bone erosion.  We made some medication changes, then had some terrible side effects, then changed medicine again…so we were concerned and anxious to see if any further damage had been done.  MRI’s are always very stressful for Megan.  She has to be under anesthesia for the test since the joint is so small and Megan is so young.  She worries about the whole process so we don’t tell her when it’s happening until the night before.  Unfortunately (and innocently) her school nurse spilled the beans, so she stressed about it a little this time.  Fortunately, the process went fairly well this time.  They were able to use a different vein for her IV (it’s placed after she’s asleep so they can poke around a little without hurting her), so I was relieved we weren’t going to stress one of her good access points before her next infusion.

megan mri toyOn the way home from the hospital that day Megan’s rheumatologist called.  She was very excited to let me know that there was no significant change in Megan’s left TMJ and that a few areas had actually improved slightly!  That’s the very best news we could have asked for.  We are so relieved and plan to continue on her current medication treatment plan (once a month Actemra infusions and weekly Methotrexate).

On the same day as Megan’s MRI, her big sister Katelyn had to also visit the hospital for a renal ultrasound.  She’s had several urinary tract infections in the past year, so we wanted to check and make sure there wasn’t an issue with her kidneys.  All checked out normally, so we are super relieved about that too!

We are prepping for the holidays and looking forward to our annual winter family cruise.  The girls are anxious to get back to the beach!  It’s been a super busy few months and I think we could all use some rest and relaxation 🙂

Happy Holidays to you all!!

family nutcracker

 

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