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!