My thoughts Archives - Page 205 of 1480

It’s really stressful when my son’s medications don’t arrive on time

Gavin is officially out of his IVIG medication and he's not been able to do his IVIG infusion today as a result. I've spoken with the home care pharmacy that's responsible for delivering these life saving medications and they're out for delivery today. That's good to hear, it really is.. That being said, why do we have to cut things so close? Why not provide an overlap because things happen and an overlap would prevent him from missing his infusions as the result of a shipping delay. That makes sense to me.. At the very least, it would alleviate the anxiety sorrounding this time of month when his supplies are depleted, he needs his infusion and the delivery hasn't arrived.. Life is stressful enough and this would make it a…

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September 7, 2018

Akron Children's Hospital / Gavin / Hematology / My thoughts

We have a very, very important appointment with hematology at @AkronChildrens Hospital today

We have a huge doctor appointment today. Actually, Gavin has a huge doctor appointment today. The bottom line is that's it's a huge appointment. We are finally getting into hematology, after trying for what seems like forever but in reality, it was about a year or so. This is a big deal because it's really the first new specialist we've seen in a long time. Gavin for the last couple of years has been dealing with an unknown blood disorder that causes his Absolute Neutrophil count to drop to dangerous levels and his platelets get very low as well. We have no explanation for this aside from it's a side effect of the Clozapine. That's a possibility but we aren't convinced that's the case. It's also possible that it can…

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September 7, 2018

My thoughts

I’m grateful for how well the day has gone thus far

We've had a pretty decent day thus far. The boys got off to school without much effort. Lizze got to her first appointment this morning and Gavin both took his meds and slept them off most of the side effects. Lizze got to her second appointment this morning and we got back in time for me to go walking before having to pick the boys up from school. It was a rough walk cause it was very humid but I finished without an issue. There isn't anywhere else we have to be today and I'm okay with that. I'm exhausted and my stomach is a bit upset. I'm grateful in regards to how well the day has gone thus far and I pray that the rest of the day can…

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September 6, 2018

Fit4Autism / My thoughts / Self-Care / Weigh-in Wednesday

Weighing in: Better late than never

Weighing in is something I try to remember to do each week but clearly not always on a Wednesday. It simply involves standing on the scale and checking my weight loss progress. The whole point is to both hold myself accountable, while hopefully encouraging others to take better care of themselves. As you can see in the above image, I've been managing to steadily lose weight for a large portion of 2018. As of yesterday, I'm continuing my trend of weighing less than I have in almost two years now. I've been using the Nokia Body Cardio Smart Scale for about a year, courtesy of Nokia Health. ☺ I haven't weighed under 300 lbs since I first crossed that threshold during the summer of 2014. At my worst, I hit…

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September 6, 2018

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

Cleveland Clinic / Gavin / My thoughts / Pediatric Neurology

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