Common Variable Immunodeficiency Archives - Page 238 of 260

Super Major Update and Awesome News

I wanted to let everyone know a big thing happened while we were at Gavin's immunologist last week. I already mentioned how we discussed his labs and why his numbers keep dropping. What I didn't tell you is that his immunologist cleared him for our trip to Florida. ☺ There's a great bit of detail that I'll save for another post, but the bottomline is, Gavin will be able to make the trip. That was something we were concerned about but also holding out hope that it would be okay. Like I said, there's more to the story, but it's really late. I will say this. There is a great deal of concern over Gavin's health, but his numbers, while still low, are out of the immediate crisis zone for…

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August 13, 2017

Reviews

Review: Contigo Autoseal Chill and Travel Mug (@GoContigo)

I wanted to take a minute and share a few quick thoughts on the Contigo Autoseal Chill water bottle and Travel Mug I received to try out. Over the years, I've accumulated quite a collection of water bottles and travel mugs. The ones that I find myself gravitating to are the ones by Contigo. I received a couple new samples the other day and I'm quite happy with them. The Contigo Autoseal Chill water bottle claims to keep things cold for 28 hours. I haven't had them for a full 28 hours but I put cold water in the water bottle about 12 hours ago and it's still ice cold. That's impressive, no matter how you look at it. Normally, water doesn't last for for more than an hour or…

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August 12, 2017

Gavin / IVIG Infusion / My thoughts

Gavin’s IVIG infusion was a success

Gavin had his IVIG infusion last night, because we were gone for most of the day. He did really well both during and after his infusion. Aside for physical exhaustion, there weren't any side effects that I was aware of. Like I said, he was exhausted afterwards, and went to bed shortly after the process concluded. Gavin looks a bit run down, but isn't complaining of anything, not that he really ever does. As far as I know, the only issue he is struggling with today is that his hip popped out once again. My understanding is that hurts like a bitch. I'm not making any plans for today because I want him resting, especially because of how run down he appears to be.

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August 12, 2017

Gavin / Major Update

Major Update: All about Gavin

We have a lot of catching up to do in regards to Gavin. Now that the server is up and running, I can finally do that. Gavin had his immunologist appointment yesterday. He did really well on the trip up and back. Sometimes he struggles in the car but he did great. We met with Gavin's immunologist and discussed everything that was going on with him at length. What we were able to confirm was that we have no idea what's causing the levels across all cell lines to go up and down. We can assume it's the Clozapine but there's no way to know for sure unless we remove it, and that's a huge deal. His levels have come up out of the more critical levels, but they're still…

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August 12, 2017

General Update / My thoughts

General Update: Here’s what happened

You've probably noticed there's been some downtime here over the last day or so. I apologize for not making a general announcement prior but I migrated to a brand spanking new server. I was approached by a new host awhile back and over the last six months, we negotiated a deal I couldn't refuse. The move was necessary and now that I'm are back up and running, things are so much better. One downside is that the support forums are gone for now, and they won't be back up for a little while. I'll have to pay for a new service every month and I'm not sure what I'm going to do yet. At this point, I'm dealing with monthly service fees again. My sponsorship is up and I figured…

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August 12, 2017

My thoughts

We are supporting Wishes Can Happen this morning

We have a very busy day. Lizze has an appointment first thing in the morning. The boys and I will be dropping her off and then heading to a fundraiser for Wishes Can Happen. Thursday and Friday they are having a Wish-A-Thon to raise funds to grant wishes for kids like Gavin. One of the local radios stations is sponsoring it and helping to raise money. If you're interested in supporting this amazing cause, click here to learn how. All money raised goes to funding wishes for kids with terminal or life threatening conditions. I promised I would do my best to stop by in the morning to show support. It's such a worthy cause and as long as nothing catastrophic happens, that's what we'll do. After that, we have to swing…

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August 10, 2017

Gavin / Immunology / My thoughts

I’m scared but we need answers

Today is a really big day because we will be making the trip to Cleveland in order to visit the immunologist. I'm unsure of what to expect because we don't know what is causing this issue with Gavin's blood. One of the things that concern me is that I haven't been able to get the results of Gavin last blood draw from Tuesday. There are several things we hope to learn at this appointment. The biggest is what are we going to do about thays happening to him. That's something we may not have an answer to until we know what's causing his levels to drop in the first place. My thought is that we will either be returning to the hospital to do much larger infusions or we will…

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August 9, 2017

My thoughts

A few things I want to do for my family

I started writing this awhile back and never got around to finishing it. As a parent, I always want what's best for my kids. As a special needs parent, I still want what's best for my kids, it's just harder to get there. There are a few things that I'm looking to accomplish, that will improve our immediate environment. Not being able to take away their struggle or pain, is difficult on me. I wish I could take away all their burdens, just like any other parent would. Unfortunately, that's not how life works. Like it or not, there's only so much we have control over. Putting focus on what I have a better chance of controlling is what I've chosen to do. I've been thinking about some of the…

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August 9, 2017