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Showing posts from June, 2018

Disney Cruise With Special Needs: Airport Security and Customs

If you are flying and/or going through customs for your Disney cruise (which I would venture, most of you are), I hope you will find these helpful.  You will also want to refer back to this post , as I won't be repeating too much of what I've already shared.  I called TSA Cares a week before our flight.  They took down a ton of information and assured me that we would have an escort through security.  She also gave me some phrases to say so that they would know exactly what we did and didn't want.  That was wonderful...except that our info wasn't shared with the airport, so they had no record of us coming.  Ugh.  They scrambled and found two TSA agents to help us (one for us and one for my sister's family, since most of their kids also have some medical issues).  These people were very helpful and kind.  I would suggest calling the airport itself the day before your flight to confirm that they have you down as a TSA Cares customer!  It worked out for us, but it wo

Amazing Trip!!

We got back on Tuesday from an amazing trip to Alaska!  There's so much to share, but I'll start with everyone's favorite activities! Julie, Matt, Mom, Dad, Abby, Anna, Caleb, Lucy, and Owen all loved meeting the sled dogs, cuddling the sled dog puppies, and riding on the summer sled pulled by real Ididarod racing dogs.  The little girls were absolutely enamored with the puppies and spent so much time cuddling them!  it was really sweet.  This was Abby's #1 thing she was most looking forward to about the trip, and it did not disappoint!  The girls said the dogs were so cute and cuddly and fluffy! Amy and Bruce said their favorite part was ziplining because it was challenging and pushed them out of their comfort zone.  That was something that they did with Matt while the rest of us went to a Lumberjack Show in Ketchikan, which was Sara's favorite activity.   Stay tuned for many more posts sharing our adventures!

So Long, 5th Grade!

Caleb is officially off to middle school!  We are so thankful for all of the wonderful teachers he has had along the way.  He's nervous about the transition, but I know he will do great. He was recognized for a variety of activities and won awards for academics, but the award we are most proud of was the Caring Award he was given for having compassion and for collecting soda tabs for The Ronald McDonald House.  Being smart is great, but having a good heart and compassion for others is what is really important in life.  Love that kid!   Time truly does fly!

Amazing Appointment!

Abby had a pulmonary appointment today, and it was awesome! I shared all of the pulmonary data we collect each day, and showed her how her high respiratory rates are trending down.  Abby also did another Pulmonary Functioning Test.  For the first time in a year, she was actually able to do the entire test without getting too exhausted to finish!  Her lung volumes have increased to 30%, which is amazing!  (It's all relative, but 30>15!!)  After discussing with her pulmonologist, we decided that we could cut the morning bipap time and also reduce the amount of saline nebs we do per day.  This gives us SO much more freedom and makes her respiratory treatments so much quicker!! Our pulmonologist was just ecstatic about how much better Abby was doing!  We are so thankful! The icing on the cake was that Abby's blood draw was super quick and on the first try.  We were in and out in 5 minutes!  Side note:  A year ago today, Abby came home after her 3 week hospital stay wit

Accomplishment!

My girl brought home her first foot for PE today!  She has done 25 laps to earn it...a pretty big accomplishment for a girl who was never supposed to walk and who has a spinal cord injury! PE is modified for Abby to meet her needs, but walking this much is still pretty challenging for her. Look at my girl go!!!!  We are so proud of her!