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!

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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.

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!