3-3-17 Long Overdue Update

The good news is that since I haven't written, things have been pretty much status quo.  We passed the 3-year mark on infusions back in November for Sarah.  That is 3 years without an ER visit, hospitalization, and minimal medication.  These infusions have been life-altering for us. We actually get to go to the doctor for checkups instead of several times a week for illness.

Over the past two years, Sarah has had an increase in trouble breathing while at school. At home, on the soccer field, running a 5k, and anywhere else, she has been totally fine.  At school, she has been needing her inhaler 1-2 times per day, often during or immediately following lunch.  In December, at her follow up with the immunologist, we brought this up.  We put her on reflux medication to see if this was the cause, though I wasn't convinced since the problem only presents at school.  After a month on reflux meds with no improvement, we went back for another followup.  At that point, we started tracking Sarah's peak flow while at school and at home.  Over the next two weeks, we found that her peak flow was significantly lower at school than home.  When she would take her inhaler at school, her peak flow would increase by 40-50%.  That is HUGELY significant.  At that point, we put her back on a daily inhaler, which she has been off for almost 3 years.  We are only planning to keep her on it until the end of school since she doesn't have issues anywhere else, but since starting it, her peak flow has been consistent at home and school.  We still do not know what is causing the trouble at school.  It may be something as simple as a reaction to a new cleaning product.  It could be as complex as mold.  But for now, we have found a solution that seems to be working.  This is her last year at that school.

Here are some random pictures.

Time at Gulf Shores, AL last summer

The kids summer 2016

Sarah loves kids

First day of 5th Grade

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Fall pictures October 2017

Sarah, Anna and Zach with Sporting KC Player Kevin Ellis

Sarah saying goodbye to Nana (her Great Grandma) at Thanksgiving

Ice Skating before a choir concert at Crown Center

Christmas Eve

Valentine's Day

Sarah's shirt is appropriate for her new soccer team...she is playing with the boys this season :)

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