childhood disintegrative disorder Archives - Page 221 of 276

Good job Gavin

I'm looking at this as a blessing but it's also kinda interesting at the same time. With all the challenges Gavin faces on a daily basis, including memory loss, cognitive decline and a bunch more, he's still doing well in some areas. This morning Gavin had his IVIG infusion and was able to put it all together, without any noticeable problems. It's not really that complex but the fact that he was still able to put all the pieces together, and draw up his medication, is a good thing. I find this interesting because there are very simple things that Gavin is unable to do anymore. Putting his IVIG infusion together is more challenging and he can still do it. Good job Gavin.... ☺

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October 21, 2017

My thoughts

The kids were up way too early

The kids were up pretty early this morning. Thankfully, they were occupied by the Xbox until about 8 AM. Everyone seems to be in a decent mood this morning and that's always a good thing. Gavin seems a little out of it but overall, he seems to be doing okay. I'm unaware of any plans we have for today, aside from housework. I'm feeling worn out from the long week and would love nothing more than to go to sleep for the rest of the day. Unfortunately, that's neither healthy or possible.

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October 21, 2017

Gavin / My thoughts / Thoughts and Prayers

Please keep Gavin in your thoughts and prayers

It's been a hard day for me because I spent some time with Gavin and I've pretty much confirmed that he's getting worse. I should back up a bit and explain what I'm referring to. I had mentioned previously that it was going to be a quiet day. I had some things around the house I wanted to do and there were a few errands I needed to run as well. As per the norm, Gavin went with me to help. We were on our way to the bank, after filling up the water jugs and he began telling about some things he's been experiencing. The first thing he divulged was that he's been having nightmares again. The unsettling part of that is these nightmares involve the house burning down.…

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October 21, 2017

My thoughts

I’m not gonna lie

It's been a relatively quiet day so far. That boys have been getting along much better than they were this morning and I'm feeling pretty good myself. I'm trying to keep myself motivated today because I want to make some progress on the house and get a few errands done as well. It's a beautiful day and I think we're going to try and take advantage of that with some time outdoors. Maybe we'll take the kids to the playground and let them have some fun. I'm not going to lie. Lizze and I are worn out because the boys have been extra challenging as of late. At the same time, we recognize the need to stay active, spend time together as a family and get the kids out of…

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October 20, 2017

Read more about the article The most beautiful flower I found in Orlando, Florida

The most beautiful flower I found in Orlando, Florida I have no idea what this flower is called but it was one of the few flowers that caught my eye while we were in Florida, on my son's Wish Trip. Having been home for almost two weeks now, I'm really missing Florida. We've talked about moving there because I can work from anywhere with an internet connection.. We absolutely miss Give Kids the World. That place is magical and hard to walk away from. As for moving, it's probably not practical but one can dream.

My thoughts / Photography

The most beautiful flower I found in Orlando, Florida

The most beautiful flower I found in Orlando, Florida I have no idea what this flower is called but it was one of the few flowers that caught my eye while we were in Florida, on my son's Wish Trip. Having been home for almost two weeks now, I'm really missing Florida. We've talked about moving there because I can work from anywhere with an internet connection.. We absolutely miss Give Kids the World. That place is magical and hard to walk away from. As for moving, it's probably not practicalbut one can dream.

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October 20, 2017

My thoughts

Not too much on the agenda

There's only a few things that need to get done today. I have to hit the bank, fill the water jugs and do Gavin's infusion. The boys are having a rougher morning because, oh yeah, they don't have school today and they're getting on each other's nerves. Lizze is sleeping in because she's still under the weather and feeling a bit icky. I didn't sleep well last night and so I'm feeling kinda rundown today. When Lizze gets up, I'll try and sneak a nap in.

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October 20, 2017

Gavin / My thoughts

Maintaining hope in the face of such a dire prognosis

There's no school today because God hates us. I'm kidding, I'm kidding. It's the end of the grading period and it's an in-service day for the teachers. I'm not planning anything for today because I want to try and keep it as low key as possible. Gavin's dealing with a lot of confusion and low key will help to keep him for getting worked up. We have an upcoming appointment with his Psychiatrist and this will definitely be the main topic. In fact, if this gets any worse, we're going to get him an emergency appointment. I don't think there's anything we're going to be able to do but we will always try. It's not easy to maintain hope in the face of such a dire prognosis but what other…

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October 20, 2017

Read more about the article One of the best moments from our Florida vacation

One of the best moments from our Florida vacation A few days into our stay at Give Kids the World, the village received a visit from Santa Claus. Emmett and Gavin were beside themselves as they waited for the day to arrive where they got to see Santa. Elliott was not so excited because he's at that age. If you ask the kids, this was probably one of their most cherished moments from our trip. On a side note, I just realized that we left without our pictures of the boys with Santa. I took this one but they took family pictures as well.

Give Kids the World / My thoughts / Photography

One of the best moments from our Florida vacation

One of the best moments from our Florida vacation A few days into our stay at Give Kids the World, the village received a visit from Santa Claus. Emmett and Gavin were beside themselves as they waited for the day to arrive where they got to see Santa. Elliott was not so excited because he's at that age. If you ask the kids, this was probably one of their most cherished moments from our trip. On a side note, I just realized that we left without our pictures of the boys with Santa. I took this one but they took family pictures as well.

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October 19, 2017