Gavin keeps losing weight

I've not talked about this in a while but as it's become a problem once again, it's time. Gavin is losing weight after maintaining for a most of the year. He's not losing crazy amounts of weight but he's lost all he's gained. We have an upcoming GI appointment and we're going to discuss the issues with his current labs (Bilirubin) and what, if anything we need to do. This will be done remotely since the labs were already done and it will be safer for Gavin. For his entire life, gaining weight has always been a problem. For much of this year, he was maintaining at 140 lbs and today he's down to 130 lbs. This wasn't overnight but it's where we are today. We've been tracking this forever…

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I feel like this is a total victory

Gavin's appointment at the always amazing Akron Children's Hospital went very well. Most of his gastro symptoms have subsided, and he does not require regular medication in that area of his life. While he's not really gaining weight, he's maintaining where he is, and that's a good thing. His doctor is happy with his progress in the weight department. Gavin spoke up a few times, but it didn't cause any confusion during the appointment. Sometimes it does because of Gavin wanting to say what he thinks the other person wants to hear. Accuracy is not his thing and makes things more confusing than it has to be. He did an excellent job today. He doesn't even have to come back for 12 months. After that appointment, if all is well,…

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Guess where we are today

We've made it to see our friends at Akron Children's Hospital, and did so on time. That's quite an accomplishment if you've driven through Akron in recent years. Anyway, this is a follow-up with Gastroenterology for Mr. Gavin. I don't expect anything Earth-shattering to occur today. Gavin's in a pretty good mood, and he's having a decent day thus far. He's a bit animated though. I guess manic would be a better or more accurate word to use, but it's not mania how he's historically experienced mania. He's just really happy, very exaggerated in much of what he does, and is extremely talkative. It's not bad, at least comparatively speaking but it's enough that we can tell something is going on. I do suspect it will be a bit annoying…

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Just a super quick note

So, I'm sorry that I've been absent from here recently or at least not writing as much as I normally do. I'm spread so thin right now and I'm having to puts some things down. I wanted to quickly post an update because Gavin is heading back to Akron Children's Hospital this morning. This is a follow-up with his gastro. He's having some problems and I need to try and find him some help. Lizze and I will have to divide and conquer today because she's has to not only be somewhere else during Gavin's appointment but she's also making sure the kids get picked up from school. I'm not feeling super enthusiastic about today but we need to get through it. I wish you all the best today and…

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The struggles we face while raising a profoundly cognitively impaired adult son

I spoke recently about some of the struggles we face while raising a profoundly cognitively impaired adult son. This morning presented me with yet another issue that was directly related to how Gavin handles things. When we were at his gastro earlier this week, there were a few issues that came up as a result of Gavin's limited capacity and poor memory. None of these things are his fault and while they would still be frustrating at times, it's his reaction to being questioned that is really frustrating. You can read the recent post about this appointment and the initial frustrations by clicking here. It wasn't until this morning that the other complications presented themselves. Gavin's doctor had asked about how he was doing with his Ensures. Gavin drinks one…

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Sometimes #Autism can be incredibly frustrating

It's been a very frustrating day. We had to totally adjust our plans because Elliott was home sick but we try very hard to roll with the punches. Autism and/or Special Needs parents have to be able to adapt because they living in a ery fluid environment. I was able to get Gavin to his appointment at Akron Children's Hospital but that ended up being frustrating as well. His gasteo is really nice and she's incredibly patient. ☺ I've spoken about this many times over the years but it bears repeating once again. Gavin is not a reliable source of information about anything, especially when it comes to his health. He struggles with memory issues and even basic comprehension. None of this is his fault but he very much muddies…

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Here’s why Gavin is returning to @AkronChildrens hospital today

We have our second out of town appointment today. This time it's for Gavin and it's with gastroenterology at Akron Children's Hospital. This is really just a follow-up because there's some lingering questions surrounding the results of his endoscopy and colonoscopy. I don't think it's anything serious but we need to discuss it. There are also some medication related changes we need to figure out as well. Gavin will also need his blood work done today. This trip to Akron will bring us really close to the time I need to pick up the kids after school. I think we'll be fine but we won't be able to afford any significant hangups. I would love it if we can walk out of this appointment with good news. Truthfully, it doesn't…

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This is an unbelievably busy week

It's going to be a seriously busy week and it's going to involve a great deal of driving. Elliott has an appointment at Akron Children's Hospital in the morning. This is for a medication check with the behavioral health center. The drive will likely be longer than the actual appointment but it is what it is. On Wednesday, I'll be returning to Akron Children's Hospital again, this time with Gavin. He's got a follow up with gastroenterology. We've been waiting for this and I need to make this happen. On Thursday, Lizze has an appointment in the morning and on Friday, I'm back at Akron Children's Hospital once more for the boys. This is just a regular thing with their pediatrician. It's not a big deal but we still have…

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