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!

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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!

Our stem cell journey: beginning

I’m titling this “beginning” because after receiving the stem cells, I’m hoping to begin documenting changes we see in Colleen!

We traveled out to California on Tuesday. The flight itself was very nice and I couldn’t have been happier with JetBlue and with how well Colleen did on the flight!

I wanted to fly out a little early, just in case. If anything for delayed or canceled, it would have made getting to her appointment impossible.

I want to talk about everything (traveling, about LA and so on, but I’ll save that!)

Her appointment was at 9am Thursday. We brought her emergency seizure meds, diazepam with us, and it could be used to help her relax when it came time for the IV. While waiting for the diazepam to work, we went over Colleen’s medical history in-depth while she had a microcurrent on her forehead and neck. I wish I could explain it better, but it can be programmed to send a microcurrent to specific areas of the body. In this case, we wanted it to go to areas of Colleen’s brain.

After getting her history, Dr. Shieh programmed it to be more specific to Colleen’s’ needs. It’s very interesting to hear different ways it can be effective!

Speaking of having Dr. Shieh explain things better than I ever could, you can listen to a podcast of him explaining stem cells!

Part one here.

Part two here.

This hardest thing about stem cell therapy is definitely placing the IV. I didn’t want to have to fly all the way back if we had to reschedule so I was praying Colleen was relaxed enough. After IV was in, she wasn’t very happy and I was so worried about that IV so I tried to held her arm in place. Frozen eventually came to the rescue and that calmed her down! Whew.

The actual stem cells were delivered in a box with dry ice. (The tube is about an inch and a half long!) They come with paperwork with all the tests that were done. After the placenta is being donated by new parents, everything goes through the same testing as say someone donating blood would.

Some of the stem cells were also spaying into Colleen’s nose. After that, IV was taken out, and everything was done!

Some people wait a few months for another treatment, others wait 6 months to a year. Colleen has had enough donated through her YouCaring so we can have more than one treatment! I’m not sure how long we will wait, to be honest! We are also trying to buy the microcurrent machine to help as well!

And now we wait and see. I’m so excited to see what will happen with Colleen and what changes we may see. You can be sure that I will sharing! ❤

Personal health: update!

Last month, I shared that I was going gluten free in an attempt to try to feel better and I thought it was time for an update.

I'm still going strong! I thought about adding gluten back in about 3 weeks into this health change, but after talking with a number of people, it seems like it should be a longer process.

Do I feel better? Eh.. that's debatable. There's days where I feel I have more energy, and there was a week straight where all I wanted to do was sleep, even after getting enough.

So the jury is still out, but I also haven't eliminated other possible thyroid triggers like milk. I have an appointment with my doctor next week. While I think she's helping, I also think my thyroid levels are no where close to being optimal yet.

This brings me to my weight! My work gym hired a full-time trainer and nutritionist a few months ago and just recently started a fat loss competition. Since scale hasn't budged in months, I asked and got a nutrition plan focusing on Macro nutrients. I'm on the second week, and now that I have a food scale, I think this is going to be a powerful tool in making sure that while my thyroid isn't optimal, at least my nutrition can be!

Haven't moved the scale much at weigh-ins, but I'm determined!

(In picture, I am 146.8)