Looking for & finding answers.

At the end of the school year this past June, the amount of progress Colleen made was astonishing and I was excited for her to continue that progress into summer school. Her only setback during the time was a bout of strep but she seemed better after a round of antibiotics. Then, it was her Disney trip, which. I knew with the heat, was going to be a little tough.

Never would I have thought that she was going to struggle so much at the beginning of the school year. Between increased fatigue, myoclonic jerks, and seizures, there was obviously something going on. We ended up meeting with her school and got to see the progress she made vs where she was and it was clear there was a major issue. Two trips to the pediatrician to rule anything else out, like having mono or even something genetic like hypothyroidism, since that’s something I have. Her tests came back fine, which is both good and bad. Of course, I don’t want any bad results, but on the flip side, it’s stressful because there’s clearly something different.

Finally, last week, made the annual trip to Boston Children’s for her neurologist appointment. She had a EEG scheduled in the morning and then a follow up that afternoon. I don’t think I’ve ever hoped for a myoclonic jerk, but they’ve never been able to capture one during the EEG. She didn’t have one while awake, but they were able to capture one disrupting her sleep. I think this was a clear reason why she’s so tired during the day, especially if they’re waking her up so abruptly.

Post EEG nap!

Our original appointment time with her doctor wasn’t until 3:30, so we were going to try to find something to do, but they were able to page the doctor and gee her appointment for 1pm, which meant only a 45 minute wait! They actually initially told us they couldn’t get her in earlier, but with her being so tired, I let her sleep. While waiting, that’s when I found out we could be seen sooner!

We met with her doctor, I showed him the note from her teacher (she did an excellent job with writing things she was able to do vs now) and our own observations. I told him about the tests and thinking something would come back and the clear reason. Then we discussed options. While discussing where we could go from there, we had to call the pediatrician to get her med level results and found out that last year when we came, her level was in the 80’s. This appointment, it was only 65. We ended up deciding that we would increase her morning dose and could possibly increase a little more if needed. What I love about Boston and her doctor is that he really explains things in a way we can understand and works with us to try to come up with the best course of action for Colleen.

With a plan, we headed home. Friday morning, Colleen went to school and I prayed there wouldn’t be a phone call. It was a huge sigh of relief when her teachers told me she had the best day since the beginning of the school year. One little dosage increase can have that much of an impact?! And the answer is yes! Colleen has gained about 4 Ibs and has gotten taller. It made me realize that maybe she needs to be seen twice a year vs once, because if she’s growing that much, we need to be on top of her medication dosage.

I’m so relieved. Well, that may be an understatement. She’s worked so hard to get to where she is, it was hard to watch her struggle so hard in all aspects of her daily life. Thankfully, I can not recognize when it might be time, and of course, we have other plans just in case, because it’s really only been a few days.

And, as a final note, can we take a moment to discuss post-EEG hair? When her doctor was close, obviously we can go right home and give her a bath. They do as best as they can after they take the leads off to get the gunk out of her hair, but there’s only so much a washcloth can do. This time, they used a washcloth and baby shampoo and I was able to brush it and it looked slightly better. What do you do after an EEG? I kind of wish there was a room you could use just for a good hair wash!

Make-a-Wish Trip Part 2

I wish I could say that i was so organized that I could break down every part of the trip and what happened when, but I decided it would be better to just story-tell through the remaining photos!

 

Magic Kingdom has a steam engine that we rode around the whole part. We made a special trip back just for this!

At Disney Hollywood Studios, we stopped by to meet Olaf before catching the Frozen sing-a-long. Colleen had to show Olaf her sandals! Elsa insisted he would love them. 🙂

I don’t have any photos, but we also saw the Finding Nemo musical at Animal Kingdom.

The day we went to Animal Kingdom, there was a lot more afternoon rain that usual, so after seeing Finding Nemo, we ran back to the car before a thunderstorm rolled through.

One of the things I wanted Colleen to be able to was ride the horses back at GKTW. We got up early one of the mornings to ride before breakfast. I’m not sure she knew what to make of it, but by the second lap, she made herself comfy! Now that we’re home, I want to look into Hippotherapy for her.

We also got a day at Universal. This was another park where there was just so much to do and not a lot of time to do it. I also didn’t feel like it had a lot rides she could have done, so we took a ride on the Hogwarts Express. I’ve been wanting to come here since it opened, and it was a magical experience! I bought Hermione’s wand so Colleen could try to spells, but it turns out, I’m pretty rubbish at helping her. (Did you know, you can buy an interactive wand and perform these spells and various locations?) It was fun watching others do it, but when I tried, I really couldn’t make anything happen. Guess I’m 100% muggle.

The last day there, we went to the NASA Space center. I think she enjoyed the videos and providing her own commentary. The bus tour makes very certain her wheelchair wasn’t going anywhere!

And of course, I wanted to do a trip to the beach. I went very unprepared, but I think her day was made. She absolutely loves water! Cocoa beach had quite a bit of seaweed when we visited but the water was amazing. I think she could have spent the whole day there.

I was so happy Colleen had this amazing experience. She loved all the Frozen experiences and it made my heart beyond happy to see her face when she met Anna and Elsa. I want to take her back as soon as possibly, but realistically, we will have to plan! I’m thinking probably what would be the winter here in NY will likely have the cooler temps in Florida. Hopefully then, the heat won’t be too much and she won’t be determined to stick her fingers in her wheelchair spokes!

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!

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?

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!

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!

One week post stem cells

I realize this is late now! But here is the post I started:

Friday was one week post stem cells, and I thought it would be good to share some things we notice with Colleen.

I will be honest and say that there was a part of me that was hoping after a few days, we would be able to witness something amazing. 9 days after, what we are seeing is Colleen using more should when vocalizing. Before, that was something that seemed to come and go. For the past week, she’s been using sounds that I haven’t necessarily heard from her before. In the car earlier this week and when I turned on the radio, it seemed like her little way of singing. I would so love to be able to communicate with Colleen more easily.

Second, is that she seems more focused on things and takes special interest. Like having her nailed clipped, she intently watched!

She had a neurologist appointment on Wednesday this week at Boston Children’s, along with an EEG. What I love about them is that they work with us to come up with a plan that everyone agrees on and are not interested in over-medicating Colleen. In the past, other doctors have tried to control the spikes on her EEG. Boston wants Colleen to be able to function at her best while having no seizures. Still awaiting results on her EEG, so hopefully I will find out after the long holiday weekend!

Our stem cell journey: beginning

I’m titling this “beginning” because after receiving the stem cells, I’m hoping to begin documenting changes we see in Colleen!

We traveled out to California on Tuesday. The flight itself was very nice and I couldn’t have been happier with JetBlue and with how well Colleen did on the flight!

I wanted to fly out a little early, just in case. If anything for delayed or canceled, it would have made getting to her appointment impossible.

I want to talk about everything (traveling, about LA and so on, but I’ll save that!)

Her appointment was at 9am Thursday. We brought her emergency seizure meds, diazepam with us, and it could be used to help her relax when it came time for the IV. While waiting for the diazepam to work, we went over Colleen’s medical history in-depth while she had a microcurrent on her forehead and neck. I wish I could explain it better, but it can be programmed to send a microcurrent to specific areas of the body. In this case, we wanted it to go to areas of Colleen’s brain.

After getting her history, Dr. Shieh programmed it to be more specific to Colleen’s’ needs. It’s very interesting to hear different ways it can be effective!

Speaking of having Dr. Shieh explain things better than I ever could, you can listen to a podcast of him explaining stem cells!

Part one here.

Part two here.

This hardest thing about stem cell therapy is definitely placing the IV. I didn’t want to have to fly all the way back if we had to reschedule so I was praying Colleen was relaxed enough. After IV was in, she wasn’t very happy and I was so worried about that IV so I tried to held her arm in place. Frozen eventually came to the rescue and that calmed her down! Whew.

The actual stem cells were delivered in a box with dry ice. (The tube is about an inch and a half long!) They come with paperwork with all the tests that were done. After the placenta is being donated by new parents, everything goes through the same testing as say someone donating blood would.

Some of the stem cells were also spaying into Colleen’s nose. After that, IV was taken out, and everything was done!

Some people wait a few months for another treatment, others wait 6 months to a year. Colleen has had enough donated through her YouCaring so we can have more than one treatment! I’m not sure how long we will wait, to be honest! We are also trying to buy the microcurrent machine to help as well!

And now we wait and see. I’m so excited to see what will happen with Colleen and what changes we may see. You can be sure that I will sharing! ❤

#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!