New AFO’s! 

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! 

Cerebral Palsy Awareness Month!

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. ❤

The ups and downs of February

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.

 

img_2772-recovered
Frozen always makes Colleen happy!

 

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!

The struggle is real.

When I found my new doctor and started taking my new thyroid medication, I seen a brief loss on the scale and thoughts of “hurray! My thyroid is working!” went through my head. That was short lived. As much as I want to hide away and stay silent on the issue, I know it won’t do me any good. I know this is a tough battle, but I have to keep on fighting. Since starting the vitamin D, I do think there has been a slight improvement in energy. Small mercies. Just have to keep on track with my nutrition and hopefully everything else will fall in to place. 

I couldn’t be happier with how well Colleen is doing. The first few months of the school year, she would hardly eat anything. Specifically, her lunch. I was worried knowing how many hours she was going between meals. I stuffed so many snacks in her backpack in hopes that there would be something in there that she would eat. Now, I get word that she’s eating not only a diverse lunch, but all of it! Horrah! 

Thyroid Frustration

Last year around this time, I was able to lose 13 Ibs in about 40 days during a work challenge. I was incredibly happy with the progress, but I soon let that slip. I experienced an odd allergic reaction to something and after, let myself slip a little. 

Then, I noticed my hypothyroid symptoms more. In April, I had a checkup and my numbers looked “fine” but I knew I didn’t feel fine. I was exhausted all the time, my hair was falling out and my weight was creeping up more and more, despite continuing what I had been doing. It makes you start to wonder if you’re going to be stuck forever overweight. 

I started doing some research and found the site “Stop the thyroid madness.” So that’s where I am today. My doctor wasn’t willing to let me try different medication so I was finally able to get in to see a new doctor in December. I have starting adding in T3 but so far, I still feel exhausted by the afternoon and weight is still going up. Ugh!! 

My new doctor wanted me to do the 21 Day Vegan kickstart, which I am all for. But I need to get better at meal planning. 

So, now I still start documenting this part of my journey! Follow up with my doctor this month, so praying I can get on a slightly altered plan to get me optimal! 

2016 and on to 2o17!

Last time I posted, WordPress was giving me a hard time posting, so hoping that isn’t the case today.

I’m not sure what happened to 2016. I feel like in the blink of an eye, we were in January 2016, and now its January 2017.

I had high hopes for Colleen’s health since the last post. As I had mentioned, we came home from Boston with a different child. She had begun to stand on her own and made some progress. While that is still the case, it seems almost daily where she wakes and has a lot of small jerking. And every morning I pray it doesn’t turn in to a full blown seizure. This monster is relentless.

Getting back to school after a week off was a slight challenge. Her first day back, her teachers said she was so tired the whole day. At one point, she just laid her head down on the table and took a nap. Eating was a struggle, but she’s since started to eat better.

I’m going to make it a point to blog more. It’s a struggle to try to draw a line on what I share. In some ways, I know this blog is generally for me to go back and read. I want to share Colleen’s journey and my own journey but I hate writing about myself! Like, who really cares?! 🙂 But at least I can know I can look back and watch this crazy little journey called life.

Progress!

Colleen’s IEP meeting with the school was earlier this week, and one of the comments they made was that we brought a different child with us back from Boston. I had to think about that statement for a while. Colleen was exploring more. One of her favorite things to do currently is to throw a ball and chase after it. She’s more vocal, which by that I mean she is making different sounds; ones she hasn’t made before, like a “y” sound. And she is showing far more spunky personality. Doesn’t want to be held? She will grunt and try to shove you away. She might not be able to tell us what she wants, but she can certainly express her displeasure! 

The most noticeable progress I’ve seen is standing from sitting. On Wednesday night, I was going to put dinner in the oven. She had a disc toy that plays music, and she likes to sit and spin it around because of its shape. Well, she was sitting one second, and then the next, she was standing there! Maternal instinct kicked in as I ran over, praying she didn’t fall over. She can be a bit wobbly, but she spent the next few hours before bed standing up. There were some falls on her butt and some getting down on her own. But she did it over and over. Then she slept for 14 hours!

I’m so incredibly proud of her and the progress she’s making.

Happy November!

Hey there! How’s it going. Life has been busy, but I have some updates to share.

First and foremost, my little girl is 5.. 5!! The days are long but the years are short. Happy birthday to my sweet, sassy and strong little girl. You give the best hugs and have an infectious laugh. Your strength is far beyond your years and I am so blessed to be able to watch the wonder in your eyes as you learn and grow. ❤
It’s Epilepsy Awareness Month! I have had a campaign planned for a while, but my designer brain hasn’t been able to come up with an idea for it yet. I’m hoping that I can have something ready for Purple Day coming up in March, so stay tuned for that!

A few years ago, I heard about the Embrace epilepsy watch. At that point, it was at it’s funding stage but I was very intrigued. As funding progressed, I knew I had to get one for Colleen. So, last year she was approved to receive a watch donated from the Epilepsy Foundation. And a few weeks ago, we finally received it! It was well worth the wait. Bar some charging issues that I’m currently trying to resolve, I am extremely happy with it. I wasn’t sure, at first, if it would be able to detect Colleen’s seizures. Up until that point, she was having silent ones so it was almost impossible to tell. But since March this year, she’s had seizures where her arms jerk. My only consolation in this is that the Embrace can and has caught this type.
Last week we were in Boston for a followup. Her EEG really hasn’t changed. She had a seizure before her appointment that morning and another when we got home late Friday. It’s a challenge to wonder if there were triggers or if it’s just happening. If there was a trigger, I think lack of sleep is high on the list. Otherwise, I don’t know and it makes me so sad. She was fully weaned off of keppra and is now only on depakote sprinkles. She only has room to go up 1 more pill a day on this. Beyond this, I don’t know what we’ll do. This year has not only seen a dramatic increase on seizures, but the type as I mentioned before. I can only hope that maybe as she gets bigger, they’ll eventually cease. But, one day at a time. 

Blah.

Now would probably be a great time to update, as I sit here on the couch trying to ignore the insane urge to itch. But I’ll get to that…

It’s been a while since my last update. Overall, Colleen is doing well. After her last gastroenterologist appointment, we’ve been getting her on a small dose of miralax everyday. This keeps all things functioning well in the belly and we have a very happy little girl for it!

She has her kindergarten transition date meeting scheduled in May and so I was happy to see a lot of her current therapists planning on attending. With their knowledge, I have no doubt that we’ll get her everything she needs to get progressing. I also really want to find out if they offer music therapy, as I think that would be extremely beneficial to her. Girl loves her some music. Any kind. Even my wails on the violin. 

Last weekend she got to go to two birthday parties; one for her cousin Mia, and one for a school friend. Colleen absolutely loved the little ball pit my sister had out. She skipped her early afternoon nap of course, so she seemed tired throughout the party, but still a happy camper overall! 


Sunday was her school friend’s party. It was at MyGym and I must say I was very happy with them. They helped Colleen sign happy birthday to her friend, and after zip lining, they took out a little seat so she could take a turn as well. 


Nap may have also been skipped prior to this party as well. 🙂 

After such a full weekend, I was normal at all excited to go back to work Monday. Can we have an extra weekend day please? During the day, I noticed some red on my face, but I attributed it to that lovely monthly. Later that night I put Colleen to bad and noticed I also had a rash starting along my upper chest. Panick ensued. Whatever this is can’t get spread to Colleen!

I went to urgent care early Tuesday only to be met with the hand to chin and squinty eye look as the doctor tries to figure it out. No ideas from them. Just prescribed some lovely steroids to help with the rash and to take an antihistamine.

At this point, it’s not better and spread some more. Trip to my primary lead to more “I don’t knows.” And “let me know if it gets worse.” It was worse, which was why I was there. Two antihistamines now and I’m almost done with the steroid pack. 

Hoping this weekend will help. There is absolutely nothing new that I bought and used. Everything I use is what I’ve had. Frustrating but it might take a while to get in to see an allergist. 

Haven’t worked out in almost a week. Minus the hot bath Monday night, working out was a very bad decision, so I’ll have to concentrate on nutrition over exercise.