Thanks to the good folks at JetBlue we got in to Boston early last night and got home around 10 last night. A very successful first adventure in the world of air travel. We have new respect for the good folks who fly with their kids to get Omegaven.
On the last day of Oley the weather cleared up a bit and so we put on our suits and raced out to the beach to get our girl some good beach time.
The waves were pretty big but she loved it. Much better than last year when she ran screaming from the waves.
If anyone griped out loud we joked that we were ready to ask Ellie: 'Ellie lift up your shirt for the nice man.' we met other families with a rage of issues and they all said that this program was the difference between going to Disney and staying home. Email us if you want more details.
Cinderella, Belle and Sleeping Beauty all need gold stars for the day on Friday. Around lunchtime on Friday we went ot the Princess Hall of Fame to accomplish our only goal for the trip to Disney: Ellie meeting her favorite princesses. Now I know that it is their job to be bubbly and nice but these three really went above and beyond for our girl.
I am convinced that I could see the moment that Cinderella saw Ellie's central line dressing and catheter and from then on she turned it on even more. Wonderful, simply wonderful.
How do I get a letter of thanks to them without sounding like a stalker? Dear Cinderella, Belle and Princes Aurora....
Other things we learned:
- Parents need to check their plans at the door when doing Disney with a three year old on TPN. we had lofty plans to do two parks in two days and then fly out at the end of the day on the second day. This would have worked just fine if Ellie wasn't three and her TPN didn't need to stay cold and.... we changed plans, skipped the second day and had a great day yesterday instead.
- Jet Blue is fantastic. The TVs are just the beginning. Turns out they check extra bags with medical equipment for free. we like free.
- For all of the criticism that they get, there are some excellent TSA agents out there. We called ahead to the airport the day before our flight and at 5 AM on Monday we were met by a very professional supervisor at Logan in Boston.He asked some simple questions about Ellie and escorted us and a carry-on that was full liquids, gels, aerosols, scissors, needles and pumps that can't go through an x-ray through security.
Gus had a special adventure while we were gone. we are still sorting out the details but it involves bolting from a dog sitter, finding his way a mile through the woods, getting picked up by a stranger 12 hours later, transferred to our neighbor, spending a night across the street and finally coming home late last night. He is as tired as we are but we are all home. Anyone know a good dog sitter in MA?
Gotta go and feed the girl. Eating has been an adventure this week to say the least but Ellie has done well enough and maintained her weight. Restaurants are fun but distracting. What we need now is a few weeks at home.