Slight change of plans.

With final payment of Colleen’s stem cell therapy coming due, I made the decision on Wednesday to postpone Colleen’s treatment. Still being a bit short on covering the costs, I hadn’t heard back from the foundation I applied to help and I didn’t want to waste the doctor’s time either. I’m sad… I was looking forward to how this second would help. But, overall, I know it’s okay because I know it will happen eventually. Just want to wait a little longer.

To be honest, waiting is probably going to be a benefit as well, because September 4-10th is Colleen’s Make-a-Wish trip to Disney! She is slightly obsessed with Frozen and lately, she’s been intrigued my Moana. She is getting over strep throat, and was not happy at all. Frozen came to the rescue a few times and after one brief episode of being upset, Moana came on after the Frozen video and she was hooked. She even watched it at school. She’s finally expanding her Disney love. Haha. Based on her huge smile when the videos start, I can’t wait for her to see the Cinderella castle!

I’ve been browsing Instagram tags, but would love to hear what you recommend to do while at Disney! What would be fun rides for Colleen to do?

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Preparing for Travel

The date for Colleen’s second stem cell treatment is fast approaching, which means we’re in for a big day of travel.

I will admit that I was very nervous for Colleen’s first flight. We had never flown before, choosing instead to usually drive the 5.5 hours from central NY to Boston when we had to see the neurologist. But, I think with a little preparedness, the day went really well, and I’m far more confident traveling not only with a child, but managing items like a wheelchair and car seat!

If you’re interested, here were things that helped us travel:

1. Booking the flight- With finances a huge concern, we learned from a family friend, who is also a pilot, that there are programs that will help you get travel accommodations. Often, these are volunteer pilots who will fly you to your destination city. Since we were traveling from NY to Los Angeles, we instead were able to book through a partner airline. Ours was JetBlue, and they were so nice! I gave all the details, like amount of checked bags and that we’d be traveling with a wheelchair. I don’t think (don’t quote me) that telling them is a requirement when booking, but I just wanted them to be aware.

2. TSA and Airport- I think I read just about anything and everything I could about going through security. I was worried about her medications and her food. We brought yogurt purée packets because she loves them and were worried about her eating in general. Colleen went through the gate while I went through the actual screener. When I was done, they just did a hand swab ( you can read everything about traveling on the TSA website). Medication was no issue whatsoever, and I asked a few other partners about going through security with medication and emergency seizure medication, and no one seemed to have any issues. As far as her purée packets went, it just required that I either go through an extra security step or they test all the packets by opening and using a little test strip. I opted for the packet testing.

We only checked Colleen’s safety sleeper. It comes with its own sturdy suitcase, and I can’t say enough about how much I love this bed.

We also opted to bring her car seat, not only for the plane but for the rental car. Make sure your car seat is made for airplane use; it will say on its label or in the manual. I bought some inexpensive carabiners from the hardware store, and used its own straps to secure it to the carryon. But, I’d say this was the most stressful; getting carryon, all the electronics out, car seat and Colleen through security. It was a lot of stuff, and I felt like I was holding people up. If I was by myself, I don’t think I’d bring the car seat and instead rent one. Very curious about people’s experience with renting one with car. Are they well maintained?

Thankfully, waiting for the actual flight wasn’t bad. Colleen is a great travel companion! 😊

3. Flight- My biggest concern for her was the potential for ear pain while taking off and landing. Solution? Ear Planes! I was so relieved that discomfort was not an issue at all for her. Recommend 100%.

I also made sure we had Frozen loaded onto an iPad for her and some inexpensive headphones for her. I bought $5 ones from Five and Below, and they were the big kind to make sure they went over her whole ear. Also, since they’re adult size, I actually bought a fuzzy seatbelt cover to go over the top of the headphones as a cushion, and to fill the gap!

Oh, and snacks are a plus!

4. Bringing a wheelchair- This was no issue at all. Her wheelchair is small, but is doesn’t fold (easily). We were allowed to board first, that was we could get her situated. Just had to get a rag not only when you initially check in, but also from the agent at the gate. They put that on the chair so that once you are down the ramp to the plane, someone takes it and loads it underneath the plane. My biggest issue with the wheelchair is about her wheelchair in general. I searched everywhere to see if a wheel “fender” is made. She can use her hands to push herself, but it’s generally her trying to stick her hands in the spokes or pressing her hand against the wheel as we push. She doesn’t understand that it can hurt her hand. I have yet to find a solution, and am so interested if anyone has one. Otherwise, I have my eye on a different style, like the inspiredbydrive Trotter Mobility chair. Yes! Colleen is getting stronger at her walking, but at the end of the day, she is wiped out from all the energy she’s used.

Cerebral palsy fact- those with CP expend more energy when walking than those without.

5. To close- Planning and research went a long way. Other than the flight home (severely delayed/canceled flights because storms in NYC), everything went well. Los Angeles was a fun experience and there’s so much more I’d like to see and do.

I’m not the biggest fan or flying, but I’m looking forward to Colleen’s stem cell treatment!

#Colleenisdoingtheimpossible

I'm going to make it a point to update more frequently in the upcoming weeks. Colleen's fundraiser for stem cell therapy really took off, and because of that, we were able to schedule her appointment for August 17th.

I've heard from a few people about their own children's treatment, and they're such inspiring stories. There's a lot of hope, even those I don't know exactly what to expect. Either way, we've always celebrated the tiny victories (to others) because to us, they're huge!

I plan on making a video of the complete journey, so check back later!

For now, just trying to get all the travel arrangements taken care of. Stroller vs. wheelchair. Taking her car seat vs. renting . And of course, bringing her Safety Sleeper bed. It has its own durable luggage case, but I'm very very afraid of that getting lost.

I can't wait to share more!