Sarah at Ironwoods Park 10-2016

Sarah at Ironwoods Park 10-2016

Monday, November 16, 2015

11-16-2015 Long update and Wish Trip

The infusions are still going well.  We hit the two year mark last week and the number of illnesses has dwindled to almost nothing.  We have had a few struggles over the past couple of months, and we are waiting to see if we need to up her dose because she has grown so much or if it is just a string of icky stuff.  As of now, Sarah is still at 14 grams in 70mL every other week.  Last week, Daddy learned to do infusions so he can give me a break when I am working or am otherwise unable to do them.

Two months ago, we had a scary deal where Sarah went to the nurse because she couldn't breathe.  Her oxygen saturation was in the 80's and eventually even dropped to the 70's and she turned blue.  It came back after albuterol, but her heart rate stayed really high all week.  Even when she was sleeping, it would be in the 110-120 range.  They think she just had a silent asthma attack, which was strange because she hadn't been on any asthma meds for more than a year!  She had some lymph nodes that were very swollen and extremely painful.  After an ultrasound, we found that they were just inflamed (most likely due to an illness).  We did do a round of antibiotics, which helped quickly.  Last week, we ended up back at the doctor because the lymph nodes, which never completely went away, were painful again.  He started her on another round of antibiotics and she seems to be doing fine.

Last month, Sarah (and our family) was blessed by the Dream Factory Organization (Kansas City Chapter of the Dream Factory)  Sarah's wish was to go to Disney World.  So the morning of Oct 21, we got up at 230 in the morning to catch a 530am flight to Orlando.  Zachary, Sarah and Anna all experienced their first plane ride too.

The girls with our plane

Anna waiting to board





The girls with Mom on the first leg of our trip from Kansas City to Dallas




The boys with Mom on the second leg of our trip from Dallas to Orlando





Once we arrived, Give Kids the World (which is an amazing "Village" that accepts kids who are given a wish trip) was there to greet us, help us collect our luggage, and get our rental car.




 Give Kids the World (http://www.gktw.org/) is incredible.  We stayed in a really cool villa for the week


 They catered to gluten free needs with amazing waffles, pancakes, and pizza (that we could even have delivered to our villa in the evening)



They had an ice cream palace open pretty much from morning to bedtime









They had mini-golf, a train and rides, a game room, pools, an incredible playground, and so many things to do.  Even Joshua, who is almost 15 said "I think we could spend a week here and not go anywhere else!"  Anna loved the merry go round



Every week they have Village Idol (they model it after American Idol a bit), and Sarah sang for that the first night we were there.  Here is the youtube link  Let It Go by Sarah



They have a Winter Wonderland Parade where they make it "snow", have a parade, and Santa comes and gives the kids presents




They have a princess and pirate party, a pool party, a "surprise" birthday party for the Mayor, and a Halloween Party.  They even have horse back riding, and when the kids are done they get a cowboy hat!


Each day they would come and leave something special that had to do with the event for that night.  Santa hats, princess hats

and lithographs from Pirates of the Caribbean for the boys, stuffed animals, etc.

We did not do a ton of the activities at the village because they filled our days with tickets to the different places.  We got to spend three days at Disney.  We ended up doing a day and a half at Epcot and a Day and a half at Magic Kingdom.  The kids loved Epcot.  They really enjoyed test track.  They liked Magic kingdom a lot too.  When we rode space mountain, I was a little concerned about Anna (I don't know why) but the whole way she kept yelling "THIS IS AWESOME!"  They also liked Splash Mountain, and Buzz Lightyear Space Ranger.










We got to take pictures with the characters, which was fun too!






We spent a day at Seaworld as well.  The kids really liked the rides there, but they also liked the dolphin show and aquarium.  They also got to play games and won.














We spent part of a day at Universal Studios as well.  The kids enjoyed the characters there too (as well as an insane roller coaster)













Their favorite part was after the day at Universal, we surprised everyone with tickets to the Blue Man Group.  All three of the older kids said that was their favorite part of the whole trip!




Everyone was sad to come home.  It was definitely the trip of a lifetime.  Here are a few more random pictures.






Sarah was also interviewed on Channel 9 about her trip.
Sarah's Interview about her Dream Factory Trip