Wintery Update

It's been a white-white winter here in Wisconsin!  Our first big snow storm was right before Christmas and with the exception of 2 days where the snow melted a couple of weeks ago, the ground has been white since December.  Crazy and fun

Here are some updates since the last post:

Macey turned ONE!!  One December 15th we had her 1st birthday party at our house with the extended family.  She started walking 2 weeks before her birthday and is SUCH a funny little girl.  She's like a charicature: she's so animated all of the time.  She'll walk around the house (with her funny little walk), chit-chatting about something (not understandable yet) using her arms, nodding her head, and throwing little giggles in too.  She's a good sleeper (2 naps a day and 12 hours at night) and is on the go ALL of the time.  Unlike Evie, this one doesn't like to sit still for very long.  Right now her favorite things include reading and coloring with her sister.  (And Evie would probably say, stealing Evie's toys too... :)

Evie still likes school and ballet and is really good with her letters.  She tell you what almost any word starts with and likes to rhyme.  Reading is still her go-to activity at home and at both Grandmas' houses, followed by coloring.  She and I have done some really fun crafts on days she's not in school.

Evie has been an amazing trooper since the last post.  In October she had another arthritis flare-up, probably the worst one she's ever had.  We met her new rheumatologist in Madison and while we had a rocky start, she's now doing well on her new medications.  Her new doctor has a different treatment approach than her rheumatologist in Denver which caused some concern as her knees were the size of softballs for about 5-6 weeks.  Ultimately we switched up her medications a bit and now she gets 2 injections every Sunday: Methotrexate and Enbrel.  The Enbrel has really been amazing: 6 days after the first injection her knees were down to normal size.  She's off of her daily doses of Meloxicam and after one full year of the injections we'll reassess where she's at. The hope is that she gets off of Methotrexate and then maybe lower doses of Enbrel.  She's now diagnosed with Polyarticular Juvenile Rheumatoid Arthritis which means more joints are involved than her initial diagnosis of Oligo JRA.  This new diagnosis does mean though that she has a lower risk of uveitis, the eye disease that can go with JRA.  She still has eye check-ups every 6 months.  So, we're all getting used to the new routine of shots every week: it was AWEFUL up until about 2 weeks ago.  Kyle had to physically restrain her while she literally kicked and screamed as I gave her the shots, but now she likes to be involved with the process.  She helps me draw up each dose, cleaning the vials and cleaning her leg, and now Kyle doesn't even have to be in the room.  I never thought I'd have to become good at giving someone shots, much-less my own child, but I'm getting better and the initial shock of the whole situation has worn-off (I think).  Ultimately she is the strongest little girl: she's had to endure more blood draws, shots and exams than she should have to and does it in stride.  She's amazing!!

 Christmas was nice this year: it was great not to have to travel so far and to have a home-base to rest in-between the family gatherings.  We had a great time getting together with all sides of the family!

After Evie's Children's Christmas Service at school

Johnson cousins

 

Hornickel cousins

Kyle likes his job in Delavan and I've had several interviews for positions in the area.  Nothing has been the right fit yet, but I'm hopeful that now that spring is approaching the right position will be posted and I'll nail it!  :)