I keep hoping I’d have better news to share, but the truth is that the last few months have been hard for Colleen.
At the beginning of November last year when we went to see the neurologist, we brought a list of all of Colleen’s regressions. It’s tough to look at. To see where she was and where she is now. 5 steps forward. 20 steps back. A medication increase really seemed to do the trick. And because there was room to increase a little more, we did. She was doing amazing in school and was able to participate and make strides. Her friends got to see their happy Colleen! Then the week leading up to Christmas break, she came down with the flu. We missed time that should have been spent with family. She slept a lot. Her myoclonic jerks increased.
And now, 4 weeks after she was finally rid of the flu, she’s still really struggling. I’ve lost count of how many times she’s had to come home because she was falling asleep. She’s had more bruises than I care to count from having her myoclonic jerks out of no where. I am sad for her. Her friends miss her and she has barely any energy.
Of course, I’ve been contacting neurology every few days. They’re going to get so sick of me calling that they’re going to have to do something. I’m just at a loss. They finally agreed to reduce her medication a little, and now we get to wait another week to see how she does. Praying this helps and she’ll finally get her energy back. And a little bit of freedom! I’ve had to put some toys away for fear she’s going to have another myoclonic jerk and hit her face again.
Here’s to hoping and praying my next pose has better news, health wise!
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.
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!
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!
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!:
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!
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.
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.
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.
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.
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!
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?
This post is part of the Epilepsy Blog Relay™ which will run from June 1 to June 30, 2018. Follow along!
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 1stthat 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!