Back in June, Colleen had an appointment with the orthopedist. This was during her terrible medication withdrawal period, so the actual appointment did not go well at all. After X-rays we’re taken or her hips and back, the doctor noticed some wear on one side of her hips. She asked if there was popping, and of course, my heart sank because I had noticed it quite a lot. I even told Colleen she was too young for that.
Actual exam is where the appointment fell apart, and Colleen screamed the rest of the time. Whether because her hip really hurt or part of the medication issues…or both. I don’t know. She has a follow up in December, but every time her hip pops, I panic. What does this mean for her future? She’s been doing so well and getting stronger, but will it be hindered by hip issues.
This is something I’m hoping others can share their experience with. I’m so sad for her, and praying that it’s not extremely painful at the moment.
I said hopefully the next time I wrote a post, we would hopefully be through this, and to be honest, I was beginning to think that there really wasn’t going to be light at the long, dark, lonely tunnel but it’s been three nights of peaceful rest. I’m still on edge, always expecting screams to come, but Colleen seems to have turned a corner. And I can only begin to imagine how bad it was for her body to take a month and a half…nearly two, to recover. This past Tuesday, she fell asleep around 12:30PM, while I was at work. She didn’t wake until almost 6:30, and that whole time I was thinking, “please, just let her sleep!” Her exhausted body desperately needed it.
I’m not sure how we made it through. I don’t think I’ve ever doubted myself more than during this period, questioning everything I was doing just to try to help her, while seemingly making it worse. But, if there’s one bit of help I can give, it will be advice that was given to me: lean in.
I was the lonely soldier. But I was losing. And I am so thankful that people saw me in my brokenness and reached out to offer support. So, if you find yourself in a similar situation now or in the future, know that to don’t have to do it alone. Lean in and ask for help wherever you can. Even the most simple of gestures can mean the world. I’m here too, if you need to talk, or for someone to listen.
I’m currently laying next to Colleen, my hand draped lightly across her back, hoping it’s enough comfort for her to sleep. It is just enough in this moment to keep her peaceful, so I dare not move. Her sleep is barely tethered to the first stage it seems, and we are both exhausted.
Everyday is something different and it was my hope that by now, she’d be doing better. But, here we are, far past this being a “stage” and into unanswerable territory. Last Tuesday, desperate for answers, Colleen was brought to the local pediatric ER. I know it wasn’t an emergency at all, but I felt that if someone didn’t help, I was likely going to be the one in the ER. The anxiety has been terrible…
My fears of being judged for bringing her in quickly faded when they decided to admit her. I had suspicions about the root cause, but I needed answers. Because three weeks of this was far too much.
After regressing a lot in her areas, especially energy, her ability to walk and daily seizures and myoclonics, we were finally able to get neurology to add a new medication, a Onfi (clobazam). By day 4, it was clear this AED was controlling far more than her seizures. After a little back and forth and a trip back to Boston, we got the dosage down and side effects that were manageable. Not ideal, but still manageable.
It still proved to be too much, and her behavior steadily worsened. Colleen wasn’t Colleen. Which is why, after three weeks of violent tantrums consisting of throwing herself around, terrible sleep, insomnia, and biting herself or whoever she could get ahold of, she was brought to the Pediatric ER.
I don’t think a stone was left unturned. Blood work, MRI, new EEG…everything was normal. Which was a relief.
But it still left a big question mark as to why this was happening. Onfi side effects were quickly dismissed as not being possible that it was still in her system and capable of causing this.
Luckily, since there was such a huge team, a psychiatrist that saw her listened to our concerns and was able to find a couple of studies from the past that indicated that is was in fact a small percentage of the testing population that did experience these extreme side effects.
We are now currently going on a month of this and I’m still so tired. I am wondering if and when I will have Colleen back.
Throughout the day is so much better than before. We have been meeting her a pediatric doctor who specializes in behavior and have a plan. But, much of it is a waiting game.
I never would have imagined that something like this would have challenged me so much. I’ve felt so lost, hopeless and depressed. It’s one thing to be raising a disabled child and they’re doing well. It’s another thing completely to have her struggling so much, so sad, and to not be able to help her.
For the past few days, it’s been a few nights of okay (falling asleep by herself), then just waking up early, to just downright miserable. Inability to get comfortable, insomnia, smaller glimpses of her upset episodes.
I genuinely hope that by the next post, I can say this was a major hurdle we got through, but we got through it.
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!