Anna Marie

Anna Marie
October 2013

Monday, November 16, 2015

11-18-2015 New Update

It has been a long time since I have done an update.  Anna is doing extremely well on her infusions and staying completely healthy.  She has continued to be stay off all medications, including her asthma meds for a year and a half now since starting the infusions in May 2014.   She is currently still on 6g/30mL once a week.  Her Daddy even learned how to do infusions this week to help Mommy out!  Next infusion will be today or tomorrow.

This fall, she did end up getting peri-orbital cellulitis, and that was a little scary.  One round of Antibiotics took care of it right away.  It looked like this:



It has been a busy summer and fall!  In June, we took the kids to Atlanta to visit Jennifer's Dad (and spent a few days with friends in Nashville, TN), and took a couple of days to take the kids to the beach for the first time.  We rented a condo in Panama City, FL and they absolutely loved swimming in the ocean, playing in the sand, and even swimming in the condo's swimming pool.












While we were in Atlanta, Anna had her first experience with sparklers too.



After we were home from Atlanta for a week or so, we left July 5 to go to Denver.  Nana is 92, and we wanted to spend some time with her.

Anna loves her Nana

 We hiked up to St Mary's Glacier.  It wasn't a long hike, but between the altitude and this being the "trail", it was tougher than it looks!


It was sure beautiful though
 The hike on the way up



The next week, July 11, Anna's runner helped organize a virtual run to raise money and awareness for the Immune Deficiency Foundation.  Those who were not able to meet with us did their run at their own time and place of their choosing.  We had these shirts made


And several of us met at a track to complete the 5k.  There were people who met all over the WORLD (Anna's amazing runner Jade lives in Australia and did it with a group there too!).  It was such a fun morning.  Not everyone completed the whole 5k, and some (like overachiever Zach) completed more than 3 miles.    After the race, Anna put medals on each of us.  Such an awesome time, and we raised (I believe) over $500 between the two groups!







School started in August, and Anna is in afternoon preschool now.  She has the same teacher as last year and absolutely loves her.


In September, Anna wanted to run her first official 5k.  It was for Zachary's school, and she enjoyed the IDF one we did in July so much that she wanted to do it.  I was concerned as she had only ever gone about a mile and a half, but I told her if she did it, I would not carry her, she could not complain, and she would have to do the whole thing.  She ran, chatted with people, ran back to us, and finished strong.  I am so proud of her!  It took her about an hour, but she was SO proud of her medal and wanted to know if she could do another that same day!




Zach and i were signed up in November for another 5k, and she was so mad when I was going to packet pickup that she wasn't signed up (mainly because I was worried the temperature would be cold and she would complain) that I had to sign her up that day.  It was cold, and she complained, but she did make it through that one too!  She is one determined little girl.






Anna's birthday is October 20, and she was adamant that she wanted a rainbow dinosaur cake that was rainbow inside as well as on the outside.  Her Aunt Julie delivered once again.  She had such a fun time at her party with friends and family.




Sarah was granted a wish trip to Give Kids The World, and we all left Oct 21 for a week.   Give kids the world is an incredible place, and I highly recommend checking them out, along with The Dream Factory who granted Sarah's trip.  Give Kids The World    Dream Factory Kansas City

Anna loved Give Kids The World!  They fed us so well!  She loved the merry go round and putt putt.  But they had so much to do that even my 14 year old said "I think we could spend a week here and not go anywhere else!"






Anna (and Sarah and Zach) got her first plane ride. 





We spent a day at Sea World


We spent three days at the Disney Parks








We spent a day at Universal Studios







We even surprised the kids with tickets to The Blue Man Group!  The three oldest say that is their absolute favorite part of the whole trip!  Anna really enjoyed it too.


By 11pm on the day prior to us leaving, Anna could not walk any further.  And she has a nice big brother who carried her quite a bit on the way back to the car.



Prior to the trip, Jason and the kids all got their hair dyed for fun.  Anna chose purple, and she loved it!




We got home Oct 27 in time for conferences and Halloween.  Anna's costume was too small, so the day of we went and got her a snow princess costume because it would keep her warm!  Sarah was a witch. 








Finally in November I had time to take Anna's five year pictures!







Lastly, here are some random pictures from this summer and fall.

Poor Kira.  But she just let's Anna do whatever she wants...even put clips in her hair.

Daddy rigged up his RC Car so it could pull Anna home from school in the wagon


Goofy, but must-do when having redi-whip on ice cream sundaes

I graduated from EMT school in May

Anna is obsessed with babies and animals.  This is my cousin's baby girl that we saw while we were in Atlanta.

And I don't think either of my girls had held a turtle before.  They thought that was cool.

Anna ended up with lots of stuffed animals from our Disney trip, but this was in the gift shop next to the Minion Ride at Universal.  (Think Despicable Me where she wins the unicorn and says "It's so fluffy!!")

And they are all weirdos

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