IVIG Infusion Archives - Page 177 of 181

Can pets have a positive impact on kids with #Autism?

I'm frequently asked about whether or not I think pets can have a positive impact on kids with Autism. I decided to make today's video on this very topic and hopefully it helps to answer some of your questions. Again, this is based on my experience over the last 17 years, but every family is different. What works for my family may or may not work for yours. This is intended to simply answer the question and provide you with some things to think about, prior to making a decision adding a pet to your special needs family. This is not meant to be a philosophical debate over whether or not a special needs family should take on the added responsibility of a pet. It simply discussing the whether or…

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May 17, 2018

Akron Children's Hospital / Autonomic Disorder / Gastroenterology / Gavin / My thoughts

@AkronChildrens Hospital called with a date for the procedure

I spoke last week about how Gavin is in need of an endoscopy and colonoscopy because of various potential health related problems in those areas. They needed to run labs to make sure that it would be safe for Gavin to have the procedures because Neutrophilia puts him at a much higher risk of infection. His labs came back and everything looked good. Now it was a matter of scheduling everything and waiting on the call to do so. I just got off the phone and we now have two dates. The first one is for pre-testing and that's with a nurse practitioner. My understanding is that we will basically go over everything and make a final determination as to whether or not it's safe to proceed with the procedures.…

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May 16, 2018

My thoughts

It took 10mg of Melatonin

For the first time in a week or so, I was able to fall asleep at night. Insomnia has been a periodic issue since coming off of the Paxil. I didn't fall asleep until 2AM but I slept until 7AM. ☺ Unfortunately, it took 10mg of Melatonin to get me there, and I'm a little groggy still but it could be worse. It seemed to take forever for the Melatonin to kick in, so I'll take it earlier tonight and see if I can't squeeze in a couple more hours of sleep. I'm so thankful for a decent night's sleep and I plan to use my new found morning energy to workout.

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May 16, 2018

Autism Parenting Struggles / Gavin / My thoughts

Hope isn’t always easy to maintain but giving up isn’t an option

Life can be frustrating when you're an Autism parent because Autism has a way of impacting so many facets in life. I can't think of a single area in my life that Autism has made more complicated. The primary source of frustration as of late is generally in regards to Gavin. Gavin is such a sweet kid and I don't know anyone alive who tries harder than he does. The problem is the amount of effort that must go into micromanaging his life. I hate micromanaging anything, especially when it comes to people because it feels oppressive and controlling. Unfortunately, because Gavin lacks the capacity to make a great many decisions about his daily life, it falls on us to do that for him. Gavin has always lacked what's known…

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May 16, 2018

My thoughts

Impacted by stress and it’s causing Insomnia

My weirds sleep disturbances have turned into Insomnia now. Last night I felt fine. I wasn't anxious or anything like that. I should have been able to sleep. Unfortunately, sleep never came. I didn't go to sleep until about 7AM. Today was Lizze's turn to take the boys to school and she sent me to bed. Thankfully, I fell asleep right away and slept until about noon. I'm grateful for the sleep but I hate sleeping during the day. I don't know what's going on but I'm fairly certain it has to do with stress. Stress is that thing in my life that's as abundant and constant as the love I have for my family. In other words, it's immeasurable and always there. I'm more profoundly impacted by it lately…

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May 15, 2018

Gavin / IVIG Infusion / My thoughts

Teaching Gavin to help manage his own health care

Once again, Gavin has been shorted supplies for his IVIG infusions. As it stands, he doesn't have enough left to do his next infusion on Friday. Rather than simply take care of it for him, I asked him to put a reminder on his tablet to go through his supplies and figure out exactly what's missing. Once he figures that out, he'll report to me and I'll call the hospital and put the order in. It's so important that Gavin be as involved in his health care as possible. He can't make make his own medical decisions for obvious reasons but we want him to play as big a role as he's capable of being. Getting him to utilize his tablet for something other than games is important as well.…

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May 15, 2018

Elliott / Gavin / My thoughts

Ending the day with good news

I'm going to end the day on a positive note. Elliott is feeling better after a few days of being under the weather. With any luck, he'll be returning to school in the morning. In another piece of good news, Gavin's IVIG infusion went well. He was able to complete the entire process on his own and as far as I know, there weren't any leaks. There are plenty of times where the IVIG Infusions are a disaster and he needs to be restuck a few times. Any day that ends with Gavin having a good infusion, is a good day. I almost don't care about anything else that happens because these infusions are such a big deal. A bad infusion can set the tone for the day.. Gavin did…

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May 15, 2018

Clozapine / Gavin / My thoughts

Managing Gavin’s meds can be a huge PITA

One of the more frustrating parts of being a special needs parent is dealing with medications. One of the most frustring parts of dealing with medications is getting them filled on time. Gavin is on an antipsychotic known as Clozapine. Clozapine is the most tightly controled medication in the US. Clozapine requires bloodwork before each refill and because of Gavin's recent bouts with Neutrophilia, he can only have seven days worth of pills at a time. He can't miss more than one dose or he will have to be pulled off the meds. These refills are extremely time sensitive That means four times a month he needs bloodwork and I need to worry about his refills. There's a very specific process that must take place in order to get the…

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May 14, 2018