My thoughts Archives - Page 218 of 1480

There have been challenges but we’re surviving

It's been a generally lazy kinda day here. We had a long weekend and wanted to take the day to sorta decompress. Thus far, we've had our share of challenges but everyone is doing okay at the moment. I'm hoping that the rest of the evening follows the current trend. I don't know what we have planned for the week, if anything at all. The boys want to go hiking and that's something we can probably pull off. Perhaps we can find a location we haven't been to yet. ☺

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July 23, 2018

What happens when my kid with #Autism makes a mistake?

Let me tell you something, there are days where Autism just truly sucks. I know it's taboo to say something like that because whatever but it's the truth. This morning the boy's State ID's showed up and if you remember the nightmare at the BMV, you know what we went through just getting that done. Emmett took one look at his and decided he didn't like his signature not being perfect. He immediately melted down, ran upstairs and barricaded himself in his room. All of this was because of a perceived imperfection in his handwriting. This sensitivity to imperfection is usually associated with Sensory Processing Disorder, which is a common and comorbid diagnoses that goes along with Autism. It sucks because there is no way to really help him work…

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July 23, 2018

Autism Parenting Heartbreak / Common Variable Immunodeficiency / Gavin / Immunology / IVIG Infusion / My thoughts

Emotionally absorbing another heartbreaking struggle, it must be Monday

As with every Monday and Friday for so many years now, Gavin needed his IVIG infusion this morning. Once again, Gavin put the supplies together in order to receive what essentially amounts to an antibody transfusion. This is only necessary because his body is unable to produce the necessary immunoglobulins needed to fight off infection. In other words, his immune system is severely compromised. This morning was no different than all of his more recent IVIG infusions. He struggled to put things together properly. He's been struggling to draw up the medication, without wasting a good amount of it and spent a large amount of time freaking out over the entire process. He's been struggling more as time goes by. There was an interruption in his infusions for two and…

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July 23, 2018

Emmett John / My thoughts / Wishes Can Happen

How #Autism unexpectedly influenced our day

We had a pretty amazing day. The parade was a ton of fun and we shared the float with another, amazing wish family. While it was a great experience, it wasn't without its Autism related challenges. Emmett struggled quite a bit because the Wishes Can Happen shirt he was given to wear, didn't fit the way he like his shirts to fit. The sensory issues were in full force and because the shirt was longer than he will wear them, it was a nightmare as we waited for the parade to begin. We were there about an hour and a half early, and it was a very long hour and a half. Once it was time to load onto the float, he ended up doing okay. It was really tough…

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July 23, 2018

Family Fun / My thoughts / Wishes Can Happen

If I gave you 100 guesses, you’d never guess what we’ll be doing today

Something interesting, exciting and a bit nerve-wracking happened today. While we were at the Akron Zoo, the executive director of Wishes Can Happen say down to speak with us. We were meeting her for the first time and it was a very pleasant visit. ☺ During the visit, she asked if we would be interested in representing Wishes Can Happen in the Hall of Fame community parade and ride on the Wishes Can Happen float. Right off the bat, the boys were super excited and very much wanted to us to say yes, which we did. We will be riding on the Wishes Can Happen float. We're going to be the number seven float in the long line of floats, so we'll be among the first to go and the…

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July 22, 2018

Day Trips / Family Fun / Gallery / My thoughts / Wishes Can Happen

Thank you Wishes Can Happen and the @AkronZoo for an amazing day

I wanted to take a minute and thank Wishes Can Happen and the Akron Zoo for a fantastic day. Wishes Can Happen sponsored today's trip for us and many other previous wish families. We got to visit the local zoo, meet other families who have been touched by Wishes Can Happen and have an amazing lunch. We all had a great time and truly appreciated the experience. For those who may not recall, Wishes Can Happen is a local wish-granting organization. They function on a local level and grant wishes for kids like Gavin, with life-threatening health conditions. Last year, they granted Gavin's lifetime wish of going to Lego Land in Florida. It was an amazing ten-day vacation and also happened to be the first family vacation we'd ever taken. I personally hadn't been…

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July 21, 2018

Day Trips / Family Fun / My thoughts / Wishes Can Happen

The really cool reason we’re going to the @AkronZoo today

We're off to the Akron Zoo this morning for a special event sponsored by Wishes Can Happen. For those who don't know, Wishes Can Happen granted Gavin's wish last Fall. It was an amazing experience and you can read about it here. Since then, there have been quite a few additional surprises, the latest being a free trip to the zoo. We were concerned about bad weather this weekend but it looks like it might just hold out. Everyone's excited to go and it will be nice to see the people from Wishes Can Happen, as well as meet some of the other wish families. Last night, we all went for a walk to make sure that Gavin was going to be up to going to the zoo, after having…

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July 21, 2018

Akron Children's Hospital / Gallery / Gastroenterology / Gavin / My thoughts / Surgery

Here’s how Gavin’s surgery went at @AkronChildrens Hospital today

Unfortunately, I'm not feeling very well tonight and I think it's my body turning on me because of all the stress. I'm going to make this super quick because there isn't a great deal of information to share for another week or so. As I said eariler, Gavin's surgery went well. The staff at Akron Children's Hospital are second to none and we are so grateful for how well they treated Gavin. The entire procedure was about thirty minutes and it went smoothly, without any complications. Gavin did well under anesthesia and that was something we were a hit concerned about because of his autonomic disorder. When the doctor met with us after, she explained that almost everything looks great. They only problem they found was in his stomach. There…

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July 20, 2018