childhood disintegrative disorder Archives - Page 193 of 276

A major milestone and why it’s so important

We began the new year with yet another IVIG Infusion for Gavin. He needs these twice a week because his immune system is severely compromised. These infusions literally keep him from succumbing to things that most people's bodies will fighting off without them even knowing. This is a very serious, life threatening condition and there is no cure. In all the years we have been doing these infusions for Gavin, this is the first time that we're going into a new year with Gavin performing this procedure completely independently. This is such a major milestone for a kid who's terrified of needles because this process requires him to stick two needles directly into his belly. He's come such a long way and I'm so proud of him for learning to…

0 Comments

January 1, 2018

Clozapine / Gavin / My thoughts

Gavin now needs weekly blood work

As we begin the new year, our Monday plans are already being adjusted because of the holiday. Gavin was supposed to get his labs drawn today but I'm not sure if they'll be open because of the holiday. If they aren't, we'll simply have to move things to Tuesday morning. It must happen Monday or Tuesday because he's out of Clozapine for Wednesday. As long as his labs are good by Wednesday, we'll have the script by the end of the day. This makes Gavin a bit nervous but it will all work out.

0 Comments

January 1, 2018

Inspirational Posts / My thoughts

A special New Years message

I wanted to take a minute and wish all of my readers, wherever they may be, a safe and happy New Year. I hope that we all find peace and happiness in the New Year. My wish for 2018 is that we can all come together, despite our differences and see one another for the truly amazing human beings we are. Allowing things like race, religion, sexual orientation, gender identity, ethnicity and even political beliefs to divide us must stop. As individuals, we need to make a decision about what we want our lives to mean. We must decide what kind of world we want our kids going up in. Let's make 2018 a year where hate and bigotry are outweighed by love and acceptance. Let's teach our kids to…

0 Comments

January 1, 2018

Gavin / Inspirational Posts / My thoughts

I like to focus on what he CAN do and less on the things he can’t

For all Gavin's struggles, and they are many, he still does some pretty amazing things. While he'll never be independent, that doesn't mean he's not gaining some independence. ☺ Every single morning, Gavin begins his day with a bowl of oatmeal. He makes it all by himself and when he doesn't have chocolate chips to mix in, he simply cuts up an apple instead. He used a special tool we have that let's him safely cut up and remove the core of an apple. He doesn't use a knife, especially unsupervised. My whole point here is that it's important that I focus on things like this because it's so easy to get wrapped up in the things he can't do. The reality is, there are a great many things he…

0 Comments

December 31, 2017

My thoughts

A good start to New Years Eve

The boys will be home soon and our time alone will be coming to an end. Lizze is still sleeping, so I'm not sure how she's feeling today. It's New Years Eve and I don't think we have any plans. I did mentioned to the boys that we could have a family game night with some of the boardgames they received for Christmas. Emmett was the only one excited by that idea. I want to keep things as calm as possible tonight. The kids need to sleep and I don't want to be up all night. In fact, I don't remember the last time Lizze and I stayed up to watch the ball drop. The boys are hopefully going to be in a good place when they get home from…

0 Comments

December 31, 2017

Depression Confessions / My thoughts

Depression Confessions: 2 weeks into withdrawaling from #Paxil

Depression Confessions exists to help facilitate an open and honest about how depression impacts my life. Depression is different for everyone but there are still many common threads and we shouldn't be afraid to talk about it. I've been talking about my ongoing war with depression for many years now and it's a liberating experience. I encourage everyone to be open and honest with the people in your lives about how depression is impacting you. Silence and shame are two of depressions greatest allies. I'm writing today to update you on how my journey to withdrawal from antidepressants is going. I've been on Paxil and Wellbutrin for many, many years now but it was time to come off the meds and see where I'm at. This was a big decision…

1 Comment

December 31, 2017

My thoughts

Guess who’s got the night off

The boys are at their Grandparents house and that means we're childless for the night. Lizze is not feeling well and so she's sleeping. I was able to get some grocery shopping done and now I'm settling in to watch the Blade Runner movies. I've never seen them and I'm pretty sure Lizze wouldn't be interested, so this works out. Right now, it's just me, the dogs, some french bread pizza and streaming the Blade Runner movies via Chromecast to the Xbox. I'm feeling good and look forward to a quiet evening.

0 Comments

December 30, 2017

Confessions / Depression Management / Medications / My thoughts

Withdrawaling from #Paxil is causing new problem

This whole withdrawaling from Paxil has been a really difficult journey thus far. The first week of tapering down felt like the worst case of the flu I've ever had. It lasted about a week but has since subsided. I thought I was in the clear until the next phase starts in a few weeks. Unfortunately, that has proven not to be true. While I'm not sick anymore, I'm dealing with really bad insomnia instead. To be completely honest, I'm not sure which is worse, feeling like shit or not sleeping. The insomnia began shortly after the nausea, body aches and headaches ended. I'm really struggling to get any sleep at night. I've tried over the counter sleep aides and Melatonin but nothing works. The problem is that my brain…

0 Comments

December 29, 2017