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!

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!

When you can’t communicate with your child..

More and more lately, I’ve been trying to search for ways Colleen would be able to communicate with is. This is the one area I feel that we are strongly lacking.

Colleen very briefly would use a couple of signs, like “more,” but there hasn’t been consistent use in a long time. I’ve asked about options with her School, as I know they use a program called TouchChat, but I think Colleen was having a hard time using a single finger to press the iPad button. And with that, she was still limited to two choices.

And I’m left wondering what Colleen could be capable of. As her mother, I feel that most of the time, I can accommodate her needs before she gets too upset. Like being hungry or being ready for bed. But lately, it’s been more of a challenge.

For the last week, it’s like a switch got flipped. She has more energy, she’s wants to explore, play, and vocalize. She knows what she wants, and best get out of her way! (Because if I pick her up, she very vocally protests!) But, she also has wants that make me have to guess. The other night, she slept for about an hour before she woke up upset. This hasn’t happened in forever. So I’m wondering if it’s upset stomach?! What could it be? She was starving…it was like she hadn’t eaten dinner. It’s just instances like this that are making me start to really want a way for her to communicate.

At this point, I’m thinking I should start with her School again. I’ve seen other children using eye gaze communication and I’m wondering if something like that would work.

Do you have a non-verbal child with similar abilities and challenge areas?! I’d love to hear what you came up with for a solution!

Determination

This past weekend, there was a fierce determination in Colleen. She kept trying to stand, no matter how many times she lost her balance. I was happy because it had been quite a while since she was consistently doing that. I know I mentioned before, but with a lot of Colleen’s progress, I see a little glimpse of it before it disappears again for a while.

Well, Colleen had something different planned this week. I found out from her teachers that she’s been consistently taking 10-15 steps by herself. By herself, no walker. Today, I am full of happy tears knowing that I can say I seen my baby walk! Look out, world!

3 Weeks post stem cells & the ARC of Onondaga Race

I can’t believe how talkative Colleen is. She’s constantly babbling, and it’s so amazing to hear all the different sounds she’s making.

Just the other day, I laid Colleen down for a nap. She threw her toy out, and in order to get it, she went to the opening and was trying to carefully get herself down with one arm extended to the floor. Why is this a big deal? Colleen has the safety sleeper because she just didn’t understand that she could fall out of her bed and hurt herself, so to see her processing the situation and not just going after it is remarkable.

Another thing? You know all those posts of the past where I was desperately trying to get Colleen’s stomach issues figured out? She was in constant pain from chronic constipation, and that was even after daily doses of miralax and senna. I was sick of giving her this stuff. Now, almost a month post stem cells, she has had 0 issues. How do you put to words the amount of relief that is?

This was after 1 treatment, and we will definitely be going back for more. We have not received her EEG results yet, so I will be bugging them again on Monday.

That brings me to the ARC race. The amount of support these past few months have been truly amazing. Every year, the ARC of Onondaga has their Dunkin Run Arc Race 5k and half marathon. The ARC serves the central New York area, providing services to people with developmental disabilities. They also pair runners from the communities with athlete with disabilities and they can run tandem. My friend, (and manager and amazing design mentor) Karanya, wanted to do this for Colleen.

I would have run, but I’m definitely no where near ready to run a half. (Maybe next year?!) Her and her friend, Rosemary, pushed Colleen tandem for the half. I think Colleen enjoyed herself and I was told she even came some motivational yells! 🙂

Before the race, when we first arrived, a little girl ran up to Colleen. She takes Colleen’s bus, and I was happy to learn that her brother was Hugo! Last year, we had a cerebral palsy awareness day at school because of the efforts of Hugo’s parents. It was great to meet them.

So here’s to next year. Feeling inspired by the running community and I’d love to tandem run further than a 5k. Better start practicing now!