After Colleen’s neurologist showed us her MRI and explained everything that had happened, one of the first things I did when I got home was to research brain neuron growth. There were a few articles about research being conducted, but nothing that looked like it would happen for a while. I even emailed the addressed that I could find, expressing the hope I had for our daughter.
Fast forward to a few weeks ago when I discovered the Duke is going to be conducting a stem cell study and there was a doctor in California that had been treating children with cord stem cells with amazing results. I know that this is a relatively new treatment for CP..but there is HOPE!
It would be a long journey, but I would go to the ends of the earth to help Colleen in any way we could. I started a YouCaring fundraiser, and anything donated will go directly to Colleen receiving this stem cell therapy. I explain more of Colleen story in the link! Thank you so much for taking to time to read! We appreciate any and all donations and of course, would love prayers! ❤
As with most things I set out to do, I tend to be the queen of starting something, and not seeing it through to the finish. Like, at the beginning of the year when I tried the 21-day vegan kickstart to eliminate inflammatory foods, and try to help my hypothyroidism symptoms. It only lasted so long before I fell back in to my old habits, and here I am, six months later and having gained even more weight.
As easy as it is to say, “I have hypothyroidism! Weight loss is hard” Is that really all it is? Am I doing enough to help myself? Nope. Not even close. I am a part of a thyroid group who share their experiences in trying to get their thyroid optimal. I am not there yet, but something that I’ve seen over and over is people who have started to feel better after going gluten free. It doesn’t work for everyone, but it’s something I am willing to try. How else will I know?
“The problem is that your immune system can mistake the thyroid for gluten, causing it to come under attack. When people think of gluten intolerance, they typically think of celiac disease (CD), but this is just one manifestation of gluten intolerance.”
Last week, Colleen got to go to the special olympics with her school. It’s a very large event with many school districts attending.
Of course, in true NY weather fashion, it has been in the 50’s and 60’s, but on Thursday, it was 90°. I knew I was going to have to send her with a lot of water.
She had three events; ball throw, assisted walk, and jumping! She placed 6th, 4th and 1st, respectively! So proud of her accomplishments. I came later in the morning from work, and knew from seeing her that it was way too hot out for her. Despite that, she did well, and drank a lot of water. I was thoroughly convinced that she was going to fall asleep on the bus ride back, but surprisingly, she did’t! But, she was so worn out and tired that she didn’t really care that Anna and Elsa were there.
I can’t wait til she gets to go next year! It was evident that they needed more pop-up tents, so we’ll have bring ours next year.
I’m having a hard time believing that it’s already the end of May. Slow down, time! Colleen has a field trip to the zoo, then we’re just about at the end of the school year.
The number of doctors that Colleen sees can get a little daunting when you think about it. She had her physical a few weeks ago, and we had to go over the list to make sure we were following up with everyone.
The most pressing at the moment is seeing her orthopedist and eye doctor. About a month ago, her PT noticed that Colleen’s chest was a little asymmetrical, which could potentially mean scoliosis. I guess it can be common in people with CP.
Well, I’m very happy to report that her spine is perfectly straight! The issue with her check isn’t a big deal, thankfully. We brought in her AFO’s since she’s had them for a few years.
I remember when her toes barely extended past that little white part, onto the purple. Now, her little toes peek over the edges! Definitely time for new ones!
The second most pressing doctor she needs to see is the eye doctor. When she lost saw him, he wanted to wait to see what her eyes did. They still turn in, so I think it’s time to look at the options more closely. We are worried about cortical visual impairment (she can see, but the brain doesn’t process it.) We know she definitely has an astigmatism, so corrective lenses may be necessary. Now, we just have to wait til June!
There are huge strides in cerebral palsy awareness here! On Monday, when I got home from work, I was pleasently surprised to find a letter from another parent. It was addressed to the whole school letting everyone know that is was Cerebral palsy awareness day and to wear green on Friday! (It’s was officially on Saturday.)
Friday, I got a picture from Colleen’s teacher with the caption, “green for Colleen,” with her and her classmates. We also received a green bracelet, and definitely may have to buy more.
I’m hoping that since it’s technically Spring now, the weather will improve and Colleen can start walking more. She’s been using her walker more at school and is coming home exhausted. Not a horrible thing by any means, I’m just hoping that it’s just a case of building her stamina. She has strength and determination, that’s for sure!
March is cerebral palsy awareness month, and I wanted to share a little bit more about Colleen. She was officially diagnosed January 2013, and I will admit, I was in denial. As a baby, I remember the first time she rolled over. Without knowing what to expect, it was my moment of “See! She will be okay.” But it was a long time before she did it again. And that has continued much of her life. She is capable of doing some things a few times, then we don’t see it for a long time. Colleen is significantly delayed, and a lot of it has to do with her muscle strength.
Cerebral palsy is an umbrella term the refers to a person’s ability to move. It can affect body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. It is a permanent condition that can improve or worsen over time. (https://www.cerebralpalsy.org.au/what-is-cerebral-palsy/ )
Colleen is level 2 out of 5. At the moment, she uses a walker and a wheelchair to travel long distances and for transportation to and from school. She was starting to stand on her own, but as I said earlier, it comes and goes. She will spend a night where she stands up as much as she can, then she’ll go weeks or months without trying again. But, I think she’s getting stronger. She makes me proud every single day, and I know she’s capable of so much. Time will tell what this little lady will do. ❤
You know that feeling when you wake up, and you just know you’re coming down with something? This was me a few weeks ago; I was weak and tired. I was fighting headaches on and off, and it felt like I was barely fighting off a sore throat. I was also sure that I had a fever, but nothing ever came of it. This was Saturday-Monday. By that Friday, Colleen started running a fever. Nothing terribly high, but with how I felt, I thought with some Tylenol, she would be okay in a day or two. By Sunday, she still wasn’t eating. She woke with no fever, but I took her to the pediatrician just to be sure. (Thank goodness for weekend hours!) Her doctor ran a flu test, thinking it would be negative, but it came back positive. Then I felt guilty for not bringing her in sooner. her doctor felt like she should be given the Tamiflu, and I think it helped a lot. And not that I wanted Colleen to spend her school break sick, but I’m glad that she didn’t have to miss school.
She mostly eats her lunch in her class, and after the break, we were going to start having her go to the cafeteria. She had friends eat with her before, and I think she really thrives on having others around her. Her eating really suffered from this sickness, but she’s slowly eating more. Here’s to hoping tomorrow is an improvement!
Lastly, I started Couch 2 5k! I used to run track in high school. I loved sprinting but loathed long distance. I used to run more and want to make it a habit. More specifically, I want to not hate it. I want to be able to run a 5k and not feel like I’m dying. Plus, I want to run the Tough Mudder again. 🙂 #runninggoals!