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.

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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!

No, I don’t have celiac—Going gluten free

Just in case you didn’t realize, I am not a doctor. What I am is a person who has been living with hypothyroidism for about 14 years. And quite frankly, was sick of feeling exhausted all the time. And the weight gain, anxiety, and overall brain fog. So I took my life in my own hands by researching and researching some more. Hopefully this will help you to try to find answers for yourself! And I think the first step is finding a doctor who won’t dismiss your concerns. And by first step.. unfortunately probably the hardest.

I mentioned back in June I believe that I planned on going gluten free in an attempt to feel better. Honestly, best decision I’ve made!

For years, I’ve been plagued with stomach issues. A few years ago, I had gone to the doctor numerous times to try to figure out what was going on. I was told to drink more water. I did, and nothing changed.

One doctor I finally went to, after telling him my family history, agreed to do a blood test for celiac. It came back negative. I just wanted to know what was going on with my body could actually be prevented in some way! But I did nothing. For years.

Last year, when I started feeling like my hypothyroid symptoms were getting worse, I went to my doctor yet again, and was told my numbers were fine. That’s when I found the Stop the Thyroid Madness website and Facebook group. They are a wealth of knowledge! Once I started taking both a T3 & T4 med (after finding a new doctor), I did begin to feel a little better, but the exhaustion, brain fog and stomach issues persisted. The doctor who prescribed my new thyroid medication also suggested the 21 Day Vegan kickstart. Which got me to thinking. After searching the internet, you might find yourself finding information about removing soy, dairy and gluten from your diet. Gluten kept popping up, so I searched and found this article.

As stated before, I went gluten free and it was hard to say definitively at first. Then I took two trips and didn’t stick to it. It was almost immediate regret. There was a lot of stomach pain and I struggled with exhaustion (even with enough sleep.)

It’s a tough road because I’ve had to go based on how I feel without a definitive test. I’ve had a person tell me it wasn’t necessary (gluten doesn’t affect thyroid!) and others who completely agree.

I just hope this information can help some!

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!

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!