childhood disintegrative disorder Archives - Page 185 of 276

This morning was all about Gavin

I spent the morning dealing with Gavin related appointments. He had an appointment with Dr. Reynolds and then needed to get his bloodwork done. We had about an hour long wait before we were finally seen by the good doctor. That wasn't too bad of a wait and I wouldn't have cared otherwise but I'm not feeling well this morning. One of the topics discussed was the nightmare it's been to get his Clozapine refilled. Frankly, I don't know who's to blame anymore because the lab points the finger at the pharmacy and the pharmacy points the finger right back at the lab. Dr. Reynolds issued a new STAT bloodwork order and made it very clear that the lab needs to fax the results to the pharmacy immediately. I don't…

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March 12, 2018

It was a disastrous morning for Gavin

It's been a really rough morning. I've been fighting off a stomach bug for most of the week and it's not been pleasant. I've actually not been eating much, so might be a great time to weigh myself.. Lol Anyway, Gavin did not have a good morning. His IVIG Infusion pushed him over the edge, down the street and around the corner. He was completely freaking out and there was very little consoling him. He setup his own infusion again and did a great job. He picked new locations to stick the needles but unfortunately, both infusion sites leaked and required re-sticking, which he's not a fan of, like at all. It sucks having to do this once but twice is double the amount of pain and anxiety for him.…

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March 9, 2018

Common Variable Immunodeficiency / Gavin / Immunology / IVIG Infusion / Vivint Gives Back

Gavin’s IVIG infusion is NOT going well

Gavin's IVIG infusion is not going well this morning. For some reason, we can't get any flow and I'm having to force the solution through the tubing manually. It works but it's very difficult and quite painful for a Gavin. I don't know what's wrong for sure, but it could be scar tissue. All I can do is continue to force it through or re-stick the needles in his belly. Gavin wants to avoid being re-stuck and I don't blame him. Hopefully, this will finish up sometime this afternoon and he will be okay. I'm just going to keep an eye on him through the Ping camera from Vivint Home. I've found so many uses for this system but the best have involved using the cameras to monitor my kids…

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February 26, 2018

Childhood Disintegrative Disorder / Gavin / My thoughts

Childhood Disintegrative Disorder is stealing our son from us

This post was started on Friday and has taken me this long to finish. It's been a long weekend and I apologize for my absence. I was largely absent here today because I'm struggling a bit right now. I'm having a hard time coping with certain things at the moment, Gavin being one of those things. I'll be the first to admit how terrible that sounds. I can assure you, it feels worse for me to say that. Gavin is driving me crazy and it's taking a toll. As time moves forward and his overall condition worsens, it becomes harder and harder for him to think. He has a much more difficult time trying to think his way through even the most one dimensional situations. These are things like figuring…

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February 26, 2018

Gavin / Inspirational Posts / My thoughts

He’s 18 years old on the outside but not on the inside

Gavin's having a rough time today. He's eighteen years old now but can't be treated or managed like a typical, freshly minted adult. Unfortunately, Gavin's cognitive ability is significantly lower than his chronological age. Until we have his new NeuroPsych testing done this summer, we won't know exactly how much he's regressed since the last time he was tested, but his doctors have pinned his emotional age at around eight or nine years of age. That's a ten year difference between his developmental age and his chronological age. As he gets older, it becomes more and more obvious that he is struggling. Today he was taking out the recycling (supervised of course) and his lack of ability to problem solve was on full display. We have recycling collected in a…

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February 19, 2018

Inspirational Posts / My thoughts

Why it’s important for special needs parents to find something positive in each day

When you're a special needs parent, it's quite common to feel overwhelmed. If you did a keyword search in this blog, you'd find countless times I've used the word overwhelmed to describe how I'm feeling. Being overwhelmed isn't something that's easy to deal with because of its very nature. When I'm overwhelmed, I sorta feel like I'm being crushed under the weight of all that's going on in my life. In that moment, I'm unable to carry the weight and no longer able to even process anything. It's kinda like a computer bogging down because it's doing too much at one time. During these moments, it's not uncommon to feel a sense of dread or dispair. It's important that you not give into these feelings. It's hard for people to…

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February 19, 2018

My thoughts

Do you ever feel like life has just kicked your ass?

It's been a long weekend and it's still not over yet cause there's no school today. There's not been anything catastrophic that's happened in the last few days but I feel like I had my ass kicked up one side of the road and down the other. Truthfully, Lizze and I are both on edge but there isn't one single thing that's responsible for our stress. It's a combination of things and it creates tension between us that we don't even realize is there until we have a disagreement. It's nothing major or even worth mentioning other than to illustrate how stress impacts us both. I know Gavin is wearing on me but so is everyday life. I'm absolutely exhausted, overwhelmed and truly feeling like life is kicking my ass.…

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February 19, 2018

Gavin / My thoughts

Feeling guilty because I’m frustrated with my Special Needs son

Today was full of ups and downs. If you know anything about being a special needs parent, you're likely aware that it's often a roller-coaster of emotions. Frankly, this is one of the reasons life is so hard because the ride never stops. Elliott and Emmett have been Elliott and Emmett all weekend. They're exhausting but we've managed thus far. When it comes to Gavin, that's a different story. He's really struggling and it's painfully apparent that life is not cutting him any slack. I'm going to be straight with you guys because the only way I can help is to be honest and transparent. With that being said, Gavin's driving me crazy. He's requiring more and more effort as time goes on. I know that sounds bad but let…

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February 18, 2018