IVIG Infusion Archives - Page 162 of 181

I’m struggling to find my voice

I've been writing for almost a decade now. There have been highs and lows along the way but I do my best to share our journey, despite the daily challenges. One of the problems with doing this for as long as I have is there are times where I simply burnout and sorta lose my voice. I don't mean lose my voice in the traditional sense though. When I lose my voice, I mean that I feel as though I've lost my direction in regards to writing. Sometimes I'm just too exhausted to make heads or tails of my thoughts, let alone put those thoughts into words. One of the things that I struggle with sometimes is keeping up with my writing and conveying my thoughts or feelings in ways…

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July 24, 2018

We’re beginning a new journey with one of our kids

I haven't spoken about this in awhile but we are very likely beginning a new journey. Frankly, it's something that I have been desperately trying to avoid for a number of reasons, one of them being I simply didn't want to face it. That journey is exploring the possibility of Elliott being bipolar. He's on the shortlist for this to begin with, and the generic history is definitely there on both sides of the family as well. I've spoken about these concerns in the past but we were taking a wait and see approach. Unfortunately, its become more of a concern as more and more behaviors bubble to the surface. The problem is finding a qualified psychiatrist in the area or even outside the area. It's nearly impossible because there…

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July 24, 2018

Autism Parenting Confessions / My thoughts

It’s going to be a long day

The kids have been a handful today already and I'm tired of the challenges faced at each and every turn. I love my kids but they are driving me crazy. While I know that's a short trip, it's a bumpy ride. I haven't heard much from Gavin today. He's been down to eat breakfast and take his meds. He then took a nap before coming back down to eat lunch. For some reason, the boys are being exceptionally loud today and I want the noise to stop. Unfortunately, I don't see any relief coming until bedtime. Hopefully, I'll be able to sneak my walk in after dinner but it's going to be a long day.

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July 24, 2018

Autism Parenting Confessions / My thoughts

I feel like I have to speak 5 different languages in my #Autism house

There are times that I really struggle with being the only person in my house without Autism. Today is one of those days, more specifically, tonight is one of those nights. Communication across the board is always a challenge, be it with Lizze or the boys. I almost always feel like the odd man out because while I can communicate exceptionally well with most people, communicating with my own family is not easy. Each person has their own way of communicating and in many ways, it's like I have to speak five different languages. It's exhausting having to always choose my words with caution. Some of my family is very literal, meaning if I say I'll be there in a minute, they will count to sixty and want to know…

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July 24, 2018

My thoughts

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

Autism Parenting Insight / Emmett John / My thoughts

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