Disney 2018! (So what if CVS tagged along I don't care!)

Yikes I can't believe its been almost a year since I last blogged.... We started homeschooling 2 children and are now expecting number 7 in October. So its been a very busy year.  I'm still very active in offering daily support on Rare But Not Alone Facebook group.  You can almost always reach out to me there.

We had an amazing fall. We went not hospital from June 2017 until Jan 2018!  Imatrex has been amazing in our avoiding needing IV's!

In April we had a rough month 2 hospital stays.. one triggered by an amazing thing. WE WENT TO DISNEY WORLD! We have planned only to stay at the hotel a day before we got on the Disney Dream Cruise ship (figuring low key Disney no lines or crowds and easy access to the room).  We decided to go into Magic Kingdom for the day!! It honestly was one of the best days ever. I could not stop smiling the whole time.

When we first got there we headed straight to the ride Andrew had been waiting to go on for YEARS (thank you You Tube) Haunted Mansion.  The wait was only 40 min! There was plenty to see and do in line and people did not crowd you in like I had feared... He LOVED IT!!! After that we were free to do whatever but I was not able to go there and have him miss out on that.

CVS eventually hit the LAST day of the trip when we were suppose to fly home. It didn't just hit him by myself as well. We ended up in the ship infirmary, local hospital and eventually transferred to Nemours in Orlando (HIGHLY RECOMMEND THEM TAKE UBER TO GET THERE THOUGH) We made it home a day late.  Yeah we ended up right back in our local home hospital once home... but we were HOME.

In all this mess we finally decided a medi port is a MUST.  2 of the stays it took about 10-16 tries to get an IV in delaying medication getting in for up to 4 hours... So next month the Port is going in!!

I've been reviewing a
lot of new research on CVS! There's lots of new things to share. I am hoping to have another blog entry about that over the summer. The kids are in school til..... June 22 here.. It's a New England thing.