IVIG Infusion Archives - Page 151 of 181

My kids with #Autism don’t do well with change but as their parent, I sure as Hell better be able to adapt

I was already on edge about our trip to the Cleveland Clinic this morning but our plans took a sudden, unexpected turn a few hours ago. First of all, I've said this a million times but it's worth saying once again. As an Autism parent, I have to be flexible. My loved ones with Autism don't like change but I damn sure better be able to adapt or life is run me over. The plan for this morning was a simple one. Lizze's Mom was going to pick the boys up and take them to school because we can't be in two places at once. We would take Gavin to Cleveland, deal with whatever resulted from this appointment, get his bloodwork done in the way home, hit the BMV for…

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September 3, 2018

Cleveland Clinic / Gavin / My thoughts / Pediatric Neurology

I’m really worried about Gavin’s appointment at the @ClevelandClinic in the morning

I'm really nervous about Gavin's neurology appointment at the Cleveland Clinic in the morning. To be completely honest, I'm sick to my stomach over it. I love Gavin's doctor and I love the Cleveland Clinic. Without hesitation, I can say that they are a large part of the reason Gavin's still with us today. That's not something I could ever pay back. The appointment tomorrow is all about Gavin's problems with his legs. He's been complaining on and off for awhile now, that his legs stop working. It's tough to understand what exactly he means by that because I'm not sure he knows how to describe it or that he understands what he's talking about. Essentially, he's saying that his legs stop working because they aren't doing what he's telling…

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September 3, 2018

Common Variable Immunodeficiency / Gavin / Immunology / IVIG Infusion / My thoughts

We hit an unexpected snag in today’s plans

I feel like I slept pretty okay-ish last night. I went walking first thing this morning while Gavin was doing his IVIG infusion. We hit an unexpected snag in today's plans. The idea was to walk and then take Gavin to get his bloodwork done.. Unfortunately, the lab was closed today. I guess I wouldn't have thought they would be closed but they were. This isn't a huge deal but it cuts us closer to the deadline for getting his labs done. His Clozapine runs out on Wednesday morning and son we absolutely must get them done tomorrow. It's already going to be a busy day because of Gavin's appointment with neurology but we're going to have to make it work. I hate when we cut things this close with…

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September 3, 2018

Announcements / My thoughts

#Autism can certainly make marriage more challenging but we’re celebrating 15 years today

Today is a very special day. Lizze and I are celebrating our 15th wedding anniversary. We've been married for 15 years today. That's crazy for a number of reasons. First of all, times flies. Secondly, there was a time not too long ago, where it looked like our marriage had ended. It was the darkest, most difficult time of my life. Lizze and I spent 2 years apart before reconciling. We've been back together for a few years now. Life had gotten in our way. Lizze had suffered caregiver burnout, although we didn't know that at the time, and it seemed like our world collapsed. While things aren't perfect, we're doing well and have learned a great deal in the process. We must take care of ourselves. We must take…

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September 3, 2018

My thoughts

It was a pretty great day for a couple of reasons

We had a pretty good day today. I know I told you I was probably going to skip walking but I went anyway. I was tired and not really feeling all that well but I'm glad I went. ☺ It's really important to me that I keep this up, especially when I don't want to. I'm doing so much better in regards to selfcare and I don't want to screw that up. I mentioned that we would be going to my sisters for a family cookout for Labor Day. Turns out it was also doubling as a birthday party for me. I wasn't expecting that but it was really nice. My in-laws were there and my aunt from out of town was there as well. Of course my parents and…

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September 3, 2018

Autism Parenting Insight / My thoughts

Such is the life of an #Autism family

As many Americans are already aware, we're halfway through a 3 day weekend. We're having a family cookout today in honor of Labor Day. It's going to be hot out and the kids are probably going to be a handful when we get home but we don't get to see everyone all that often. I have to make it to the store before we have to leave because I need to buy a new hat. The one you've seen me wearing in all the pictures literally fell apart like paper when I tried to wash it last night. Being among those who sport a shaved head, I need the protection from the sun. Anyway, I don't think I'm going to end up walking today but I will in the morning.…

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September 2, 2018

Confessions / My thoughts

I confess to sometimes feeling crushed by my #SpecialNeeds family

You may or may not know this but I have quite a bit in my plate. I try so hard to do right by everyone in my family but there are times I become do overwhelmed by their needs, I feel like I'm being crushed. I'm feeling crushed right now by the weight of everything. Lizze is living with high functioning Autism, PTSD, ADHD, chronic pain, fibromyalgia, depression, ehlers-danlos, bipolar disorder and untreatable daily migraines among others. Gavin is living with chronic pain, childhood disintegrative disorder (very rare, regressive form of Autism), common variable immunodeficiency, epilepsy, schizophrenia, asthma, and a very rare autonomic disorder among others. Elliott is living with Autism, sensory processing disorder, depression, severe anxiety, ADHD, food allergies and possibly bipolar disorder. Emmett is living with Autism, anxiety,…

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September 1, 2018

Emmett John / My thoughts / School / Victories

Emmett’s teacher told me the most amazing thing today

This will be quick because I'm going to bed but I wanted to share this first. When I picked up the boys from school this afternoon, one of Emmett's teachers came out to talk to me for a minute before dismissal. She wanted to me to know how much they love having Emmett in their class. She went on and on about how he's such an amazing role model for his classmates. Apparently, he's even tutoring some of the kids in his class. He was given a chance to go outside and play but instead chose to stay in and help some of his classmates. ☺ That's such an awesome thing to hear about one of my kids. We already know that our kids are amazing but it's nice to…

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August 31, 2018