Common Variable Immunodeficiency Archives - Page 149 of 260

Autism Parenting Confessions / My thoughts

My kids need to go back to school

It's been a massively stressful day because our three day weekend evolved into a five day weekend and it's been tough for everyone. Kids with Autism tend to struggle with change to routine and my kids are no exception. They were still adjusting to the new school year and haven't even been back for two weeks and now they've been off for almost a full school weeks worth of days already. This is not conducive to adapting to the new school schedule. I think we all need to get this new routine down because it provides structure that's very difficult to put into play otherwise. Today has been full of meltdowns, fighting and stress. The boys have been at each other's throats and I've just about lost my mind. As…

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September 6, 2018

I’m not in a good place tonight but here’s what happened with Gavin today

I'm not in a really good place tonight. It's been an exceptionally long day and I'm not sure how to begin digesting today's appointment. This will be brief and you can then check out a few pictures from today. [foogallery id="82317"] Basically, we don't know what's going on with Gavin's legs. Neurologically, he checked out, at least in that area. That's the sorta good news. What's next is bad news but not necessarily new bad news. His neurologist examined Gavin. While he was doing so, we somehow got on the topic of Ehlers-Danlos, how Lizze has it and it's believed Gavin does as well. Basically, Gavin's skin has become extremely elasticy (I don't know if that's even a word). It's sorta like if you're wearing a pair of loose fitting…

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September 4, 2018

My thoughts

The kids are NOT having a good morning

Oh man. The kids are not in a good mood this morning. Emmett is quite unhappy or maybe he's just stressed out. It's hard to tell the difference sometimes. I love them both to pieces but I'm really glad they aren't coming with us today. It would be rough on a good day and they are clearly not having a good day. Hopefully, things will improve for them as the morning goes on.

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September 4, 2018

Autism Parenting Insight / Cleveland Clinic / My thoughts / Pediatric Neurology

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