Blog - Page 511 of 1612

Today has been a sensory nightmare for my family

We've all heard the phrase if Mama ain't happy ain't nobody happy.. In our case it's a bit different because it goes if Emmett ain't happy ain't nobody happy. Today was a day where Emmett really, really struggled. Everything surrounding food was tough for him and navigating through the day, while coexisting with his brothers proved very trying. All the boys need to be able to play outside. There's a great deal of sensory input that can be had from crashing and bashing around the yard. Unfortunately, where we live, it's just not something we can let them do and that breaks my heart. Anyway, Emmett was like a very tightly wound spring, all day long. He was like a cat getting ready to pounce on something. There's that moment…

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September 25, 2016

Inspirational Posts / My thoughts / Reference Post

Why it’s so hard to keep my kids with #Autism and #SPD fed

This issomething I've been meaning to talk about but haven't gotten around to it. I know many of you parenting kids with Autism and or sensory processing disorder will be able to relate to this. I'm talking about how difficult it can be to feed my kids. This is one of those things that unless you're experiencing it, it's extremely difficult to wrap your head around because instinct tells us that if the child is really hungry, they'll eat. In more typical cases, that may apply but in cases of Autism and SPD, this does not apply. When it comes to my family, there are numerous reasons why feeding my kids is very difficult to do. These reasons are all intertwined, tangled and knotted up together. It's very challenging to…

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September 24, 2016

My thoughts

Depending on what you consider early, I think the kids slept in this morning

If you consider 7am sleeping in, than the boys slept in this morning. ☺ This is a very good thing for Elliott because he's been struggling to the stay asleep for the last week or so. The poor kid needed some sleep. Gavin was briefly awake before going back to bed himself. He may still be a little under the weather from his IVIG infusion last night. Hopefully, he'll rest for a little bit and be back to driving me crazy with his incessant talking in a little bit. lol I let Lizze sleep in this morning and I've been hanging out with the boys playing Minecraft. While I'm feeling drained, I'm also in a really good mood. ☺ There's a small chance the boys will be going to their…

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September 24, 2016

Gavin

Today’s Victory: The Bravest Kid I Know

I want to give recognition to Gavin and award him with a Today's Victory. Gavin's 16 years old and has already lived through more than most people do in a lifetime. He lives with truly freak medical and mental health conditions. By freak I'm simply referring to how astronomically rare they are. No matter what he goes through, he does so with a smile on his face and never once complains. His life is profoundly impacted by his health and yet he's always asking what he can do to help around the house. Gavin's such an inspiration to me as both a father and human being. It's for this and many more reasons that he deserves to have the spotlight on him because he's easiest the bravest kid I've…

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September 24, 2016

Autism Parenting Woes / Gavin / My thoughts

What my son asked me tonight broke my heart

There are times when I really hate being me. In order to do what's best for my kids, sometimes I have to cause them pain. For the very first time in all the many years that Gavin has been receiving IVIG, he made a request of me that absolutely broke my heart. Before Gavin received his IVIG infusion tonight, he said this: Dad, when you put the needles in my belly today, can please make it not hurt... Do you know how crushing that is to hear? 😢 I would do anything to not have to cause him this pain but it's causing this pain that keeps him alive...

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September 24, 2016

Gavin / Medication / Side Effects

Gavin’s side effects are getting really bad and it breaks my heart

I think I need to stop allowing Gavin to come with me to pick up the boys from school. Unfortunately, his bladder issues have gotten to the point where he really can't ride in a car for more than a couple minutes. We've been sitting here for 20 minutes and he's almost had three accidents. He's had to run into the school three times already. The school is a five minute drive from our house and he tried the bathroom before we walked out the door but still also had three accidents on the way. Right now I'm having him walk up and down the little alley by the school to help him manage this for now. It seems to help but not much. He wants to be here really…

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September 23, 2016

Major Update

A massive update on our trip to the immunologist yesterday

After running around all morning and then hanging out with Gavin for a little bit, I figured I'd get everyone caught up on what happened at the boy's appointments yesterday. The boys were scheduled to see their immunologist/allergist yesterday. She's way up north, quite close to Lake Erie actually. We followed her when she moved from Akron Children's Hospital because of how complex Gavin is and she was his primary for a couple of his disorders. Anyway, Gavin was there to have a followup on his immunodeficiency, asthma and allergies. Elliott was there for his asthma and allergies. Emmett was there for his allergies and fever disorder. I'll start with Gavin because he's the most complex. Gavin did really well on his tribal volume asthma testing. This means his asthma…

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September 23, 2016

General Update

Bloodwork is done for the week

After taking the boys to school, I went straight to the lab to have Gavin's bloodwork done. As usual, he did really well and I'm so proud of him. Today's trip to the lab marks the end of this week's round of bloodwork. I'm really glad it's over for right now. I hate that he needs bloodwork every single week but it's a necessary evil anymore.. 🙁

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September 23, 2016