Make-a-wish Disney trip!

I’m a little late with this post, but there’s been a lot of things going on behind the scenes. It’s been a struggle to find the time to write, but I’m going to try to post more, I promise! I also think my biggest struggle for this was that there was so much that had happened, it was hard to write and have it make sense. I feel like it’s all over the place. But here’s my attempt!:

Travel

With our bags all packed, we had to be ready to go early Tuesday morning for pickup. Only slight dilemma with this was that we took Colleen’s wheelchair (vs. stroller) for transportation, and it was interesting getting it to fit in a limo, but thankfully, it did!

Colleen (and momma’s!) first limo ride!

I tried to pack as lightly as possible, besides Colleen’s bed, it was just carry-ons’, but I did pack an extra duffel bag for clothes in hopes that any souvenirs would fit in the carryon cases. I think it all worked out in the end. Colleen’s bed, and a few extras, weighed 54Ibs, so I was a little worried about the fee, but JetBlue was awesome!

Make-a-wish gives you a letter that asks if you can meet the captain and see the cockpit.

I told Colleen not to push any buttons! She seemed to be taking it all in. It was a neat experience and she even got wings!

We didn’t bring her car seat this time. It was cumbersome and I’m so glad you didn’t. She was able to sit properly and I felt better that it gave her more room.

Arrival

We arrived in Orlando about 50 minutes ahead of schedule were welcomed by two Make-a-wish greeters. They help you get your luggage and rentals and make that process truly stress-free. I really wish I had gotten photos with them! We were given snacks, water, they helped even helped us load up our rental.

If you even go to Disney and drive, bring $1’s and quarters! That was a vital piece of information we were given and I’m glad because otherwise we’d be pulled over on the side of the road, panicking because we had no change.

If you have a Disney trip for Make-a-wish, you get to stay at the Give Kids the World Village. The amount of things to do here alone were enough to fill a trip!

Before arriving, I thought for sure we’d be ready to explore when we got there, but it was actually nice to relax a little after traveling.

Give Kids the World Village is it’s own little bit of magic while you’re staying there. We unfortunately didn’t get to do everything while we were there, but they have a carousel, pools, movie theatre and so much else. I think one of my personal favorites was the Castle of Miracles. Colleen was able to write a wish on a star, and then they placed it amount 130,000 other stars on the ceiling. It was beautiful and amazing to think about all the children who have been there to make a wish.

Disney: Magic Kingdom

The next day, I let Colleen wake up on her own and we ate breakfast at the village. This was essentially seeing how she would do in the heat, so I didn’t want to wake her and risk Myoclonic jerks. It’s only about a 20 minute drive from the village.

Obligatory photo

I think the biggest challenge we faced while here was the heat. We had a fan attached the the back of her wheelchair, but as you can tell, she didn’t care for the heat. It’s good to know that if you need it, there’s a resting place for you to go, but I believe it was only at Epcot.

Colleen rode the Dumbo ride, her very first!

It kind of became the schedule; a few hours at a park, back to GKTW for afternoon nap, then head back out. It was a lot of driving, but the best option for Colleen.

We came back to Epcot that night to watch the fireworks, and I wish I had the words t describe it. This was also her first time watching fireworks, and I may have gotten a little emotional. The smile and look of wonder on her face was enough to fill my heart.

Sitting to wait! I kind of wish everyone stayed seated for the show, but I was able to put Colleen on my shoulders.

Day 2: Epcot

This was the visit I was so excited for Colleen for. Thankfully she was up early, and we got breakfast to go. I wanted to get to the park as early as possible so I could find Anna and Elsa. We got there right when the opened and I practically ran to get her to where they were supposed to be. When you get to the Norway part of Epcot, you go inside the shop, and when we were brought back to where they were, I may have gotten a little emotional (even right now as I write this.) Since Colleen is non-verbal, she can’t tell be how she feels, but the look on her face was absolutely priceless.

Showing Anna our shoes! They wanted to get a paid for Olaf!

After meeting the princesses, Colleen rode her next ride, Frozen Ever After, which happened to be water log flume ride. (Had to hide her hearing aids so the didn’t get wet!) Thankfully, not a lot of water, but I think she loved it.

Oddly, parts of the Epcot world were roped off beyond Norway, so we made our way to find lunch and then back to GKTW for her nap!

Part 2 coming soon!

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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?

Epilepsy Blog Relay: Life with Epilepsy

This post is part of the Epilepsy Blog Relay™ which will run from June 1 to June 30, 2018. Follow along!

The beginning

They were scary words that I didn’t quite fully understand the impact of immediately. After Colleen’s birth and being transferred to a nearby hospital’s NICU, we got the phone call that she had had two very big seizures and would need a blood transfusion. Colleen spend several days on a cooling mat, keeping her body temperature low as her body tried to recover. We couldn’t even rub her skin in comfort as the nurses said that it might trigger a seizure. I was afraid to touch my baby in fear I might set something off. (For a little explanation, Colleen had a blood infection and a subdural hematoma. Her body was going through so much when she was first born.)

Thankfully, she was released about 20 days later, and we went home with phenobarbital and keppra to keep her seizures under control. And the meds did! At follow-up neurologist appointments, we were told that she would likely grow out of them. Her EEG’s (an electroencephalogram, a test that detects electrical activity in your brain) always showed significant activity, and even silent seizures. This meant that while she was technically having a seizure, physically, we could tell. At one point when it was caught, she only stopped playing with a toy for a short second, and then went back to playing. I held out so much hope that at each EEG, we would see an improvement and that maybe, one day, we wouldn’t see any more seizures.

A big change

After work one day when she as 2, I went to pick up Colleen from her sitters and knew she wasn’t acting right. She felt very heavy to pick up, in a way that her whole body felt limp. I drove home, watching in the rear-view as she just stared upwards. When I got some, I noticed she would continue these staring spells and her eyes would very rapidly blink. I called the neurologist. Up until that point, I had no idea what a seizure would look like, and it was surprising to learn that there were many different kinds.

Over the years, we’ve had a few different doctors (her 1^stthat we loved moved to Texas) and a number of different medications. Currently, she’s on just Depakote sprinkles, but I fear with a lot of meds, it’s a fine balance between Colleen being able to function normally and controlling the seizures. It a very fine and frustrating line to walk. I remember at one point, after coming off of one medication, her teachers remarked at just how much more energy she had. It was a sad moment as a mother to know just how much she was being held back by medication but knowing it’s something she absolutely needs.

She’s had a few seizures over the past few years, at one point, they were occurring about once a week. These were the ones that we couldsee. And they were scary. I kept thinking to myself, “What happened? She was doing so well!” And still, quite frankly, the changes she’s had over the years is not something I understand completely.

Figuring out the future

Colleen is currently 6.5, and her biggest concern with seizures is her daily myoclonic jerks. She’s had a few which have led to injury. We had to take a trip to the ER recently to see if she would need stiches under her eye (thankfully, not!). No one wants to see their child struggle, and as a mother, I am committed to helping her as much as I can. We’ve looked into the possibility of a seizure-response dog and even the use of CBD oil.

In July, Colleen is having a second stem cell therapy treatment. While this treatment is for her cerebral palsy, I’ve read a few things in which it can help seizures. Colleen has made significant improvements in mobility after her first treatment, and we have so many videos from her teachers at school of Colleen walking without use of her walker. Just her AFO’s. While she had a neurologist appointment about a week after her first treatment, we weren’t told there was any improvement in the number of spikes on her EEG. After her second treatment, I will be excited to take her to her next appointment and know whether or not they have decreased.

There’s no doubt that there have been many challenges over the last few years, and it is something I wish I could take on instead of Colleen. But there’s no doubt that she’s a fighter and has been so strong over the years. With medical advances and new studies, I can only hope that as the years go by, her quality of life in dealing with epilepsy will only improve!

Fundraising for Colleen

Hello, friends! It’s amazing to see all the notifications of new subscribers, and I hope you enjoy reading and can gain some knowledge about Colleen, cerebral palsy and epilepsy.

Over the years, I’ve heard about stem cell therapy, but I didn’t think anything like it would be possible, at least for a number of years. Then, last year, I learned about a doctor in California using stem cells to treat cerebral palsy using cord blood stem cells. I also learned that Duke university was doing a stem cell study. (Horray!) Sadly, they were looking for participants that were under the age of 5, and Colleen will be 7 this October. This, left the option of traveling to California for the treatment, but it is still a costly procedure. I so wish it was covered by insurance, so even though Colleen couldn’t participate in the stem cell study at Duke, I can only pray that this week lead to greater medical understanding and more treatment (and hopefully, insurance coverage.)

Until then, we have been trying to save and fundraise for Colleen. We have our downpayment sent and appointment booked, but we’re still short of our fundraising goal. Any size donation is greatly appreciated and will go directly to this stem cell therapy cost for Colleen. We are extremely grateful for those who donate, share and pray for our little girl!

Click here to donate. ❤

www.youcaring.com/Colleendoingtheimpossible

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!

Progress!

Hi, friends. Ive been getting updates from school, and I’m so excited to share.

I’ve said before that communication is the toughest part of daily life. Colleen hasn’t been consistent with anything, like sign language or a communication device. They started using picture cards with her, with one choice she would definitely like and one not as desirable. At school, this works well when she’s eating. She has a clear choice, like the cheese puffs she loves and something like a notebook. Lately, she’s been capable of isolating her finger to specifically point to what she wants.

Colleen has much such great progress with her walking, so I just had to share.

https://youtu.be/e2djHb7l-l4

Stem Cell Treatment: Round 2

When I first found out about stem cell treatment, I found not only Dr. Shieh, but I found out that Duke would be doing a stem cell study, so I got in contact with them. At the time last year (June), they said the study would likely be sometime this year, so I had a decision to make. Do I take her to Dr. Shieh (at the time, we did not have the funds for the treatment or trip) or wait to see if we could get her into the study. Ultimately, we were able to raise enough to take her for treatment, so I went with that. And at the moment, I’m so glad I didn’t wait! Another IG friend’s daughter was accepted, and I found out that the children in the study had to be less than 60 months (5 years). Colleen will be 7 this October. I’m hoping with this study, stem cell study will become a more common treatment and not be considered experimental. I can’t wait to watch my friend’s journey, and hope they see the same amazing results!

After the success of Colleen’s first treatment, I knew I wanted to continue treatment, so she is officially scheduled for July 12th! I am ever grateful for the help of others as we try to raise enough for her treatment. Last week, I was honored to be granted a Workplace Wish. I coworker nominated Colleen and me, and I couldn’t be more thankful.

2018 has had so much happening (lots of highs and too many lows. Lows that I haven’t discussed yet, but maybe in the future). This treatment brings me so much hope and joy for Colleen. Let the countdown begin!

Creativity & Epilepsy

This post is part of the Epilepsy Blog Relay™ which will run from March 1 to March 31, 2018. Follow along!

A passion for creativity was something I hoped to pass on to Colleen. From a child to adult, I have always had a love for drawing, music, paint…anything in which I could create something of my own.

As Colleen has gone through school, her works of art decorate our home’s walls. Whenever music plays, she’s dancing, and even when it’s not playing, I want to ask her what music she has in her head as a smile alights her face as she bops back and forth.

One of the biggest challenges for us is that Colleen is non-verbal. I can give her these things to do, and I think she really enjoys them. And I have started to wonder myself; how can I use my creativity for a greater good; to bring epilepsy awareness. I have made a career in graphic design, and I have wanted to start and awareness campaign. Something that would just inspire people, almost like the way the Ice Bucket Challenge brought awareness to ALS. What can I do to help? What can we do to help?

So, as this month of the Epilepsy blog relay draws to a close, it is my hope to inspire all who read this to go out there and do something! If you can bring knowledge to just one person, I think we will have done a great thing because that knowledge will continue to be passed along. Maybe it’s photography? Take photos of everyone you know that has epilepsy. This will show you just how strong these epilepsy warriors are. Create something purple. Get people to ask questions. Create a poster for an epilepsy awareness event. I don’t have a definitive plan yet, but I will.

Spread knowledge, spread love. All you need is a little creativity. ❤

Seizure Response Dog?! & Make-a-wish

I’m at the inquiry stage of seeing if a seizure response dog would be beneficial for Colleen. Over the years, we’ve bought both the Embrace watch and Sami cam to help make sure Colleen is safe.

But, now that she is walking more and more at school at home, it’s still scary to think that at any moment, she could have a seizure or myoclonic jerk. That moment came last week when she had a myoclonic jerk right into her toy. With her face. Ugh..she was brought to urgent care since it looked like she might possible need stitches. Thankfully, the swelling went down and no stitches required. She was still left with a nasty black eye.

Thank goodness for frankincense essential oil! Waiting to hear back if a seizure response dog would be an option. I sincerely hope so, but it means we have to minimally fund $10,000 ourselves. I think we can do it! Also want to get her in for a second stem cell treatment!

In other news, Colleen was nominated for Make-a-wish! It’s still at the beginning stages for that as well, but I’m so excited to her. She decided that meeting Anna and Elsa at Disney would be her wish. I’ll keep you up to date when that will be happening!

Til next time,

Xoxo Jen

The epilepsy monster

It was almost like the epilepsy switch was turned off. Colleen had so much energy, her teachers started asking what we had started doing different. She was vocalizing, almost in a way she was expressing her opinion. And she had some much curiosity.

I’m realizing now that perhaps it was a growth spurt. This morning, I had to hold Colleen as she had myoclonic jerk after jerk. My heart aches for her in moments like these, as I hold her, exhausted in the aftermath. I had really started to hope that the stem cells and her growth were putting an end to the epilepsy monster.

But not yet. I keep fighting and I know to do that, I will have to do everything in my power. We have a donation towards her next stem cell treatment, so working towards saving enough for the next treatment. After much thinking, I started researching what she would need for a seizure alert dog. With how unpredictable the seizure activity is, I know this would be another way to make sure she’s kept as safe as possible.