Immunodeficiency Archives - Page 2 of 3

1 big problem we had with Gavin’s IVIG infusion today

I mentioned in an earlier post that Gavin has some problems with his IVIG infusion this morning. It was actually more of a problem during his infusion and not really with the infusion itself. Normally, he sits in the same place on the same couch and plays the same game on the Xbox or his tablet, to help pass the time. Today however, his bladder issues hit him really hard. He was unable to sit down without having to get up and race to the bathroom. It got so bad that we had him stay in his bedroom for the duration because his room is right across from the bathroom and he wouldn't have to keep taking the steps. That threw him off because he's very particular about the…

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January 23, 2017

Gavin / My thoughts

3 things that have me very worried about my son

It's been a long weekend for The Autism Dad family. The boys are struggling in the sleep department and subsequently, so am I. I've been too tired to write as frequently as I like to. As my first post of the week, I want to make sure that bring you up to speed on some things going on with Gavin that have me very worried. The following concerns are not in any particular order. Gavin's memory is getting worse. It used to be just his short term memory that was problematic but even his long term memory is beginning to suffer. In fact, his short term memory is getting even worse than it's been. He's now struggling with very simple, one step tasks and is often unable to complete them…

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January 23, 2017

Gavin / Happy Birthday

Today’s a very special day

I wanted to share a something about why today is so special for our family. It was on this day back in 2000, that Gavin was born. Mr. Gavin is seventeen years old today and we are so blessed to have him in our lives. He's come such a long way over the years and I couldn't be any prouder of the young man that's he's becoming... ☺ Happy Birthday Gavin. We love you very much..

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January 18, 2017

Gavin / My thoughts

I was absolutely horrified by what my son with #Autism told me today

Gavin shared something with us that came out of nowhere and caught us completely off guard. Gavin's always talking about something and honestly it gets to the point where we have to filter him out at times. The other day, Gavin was talking to me about the random things that he always does. I had started to tune the talking out and had just about done so successfully, when I heard a name that I hadn't heard in a really long time. I was instantly snapped back into the conversation and this is what Gavin told me. Continued on page 2 He explained that he had a really bad nightmare. In this nightmare, someone was slicing his (Gavin's) hands open with the a large knife. That was creepy enough but it's…

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January 18, 2017

General Update / My thoughts

Reflecting on this past weekend has taught me 3 things

The four day weekend is almost over and we have lived to tell the tail. :-) All joking aside, it seemed like a longer weekend than it actually was. The boys were the boys and that's not a bad thing. They were all challenging at times but I have great memories with each of them over the past four days. Challenging doesn't always mean bad. What challenging typically means for me is exhausting. This weekend was exhausting even though we didn't go anywhere. It was exhausting listening to Gavin and constantly trying to stay at least a few steps in front of him. It was exhausting trying to get the two youngest to eat what we bought at Aldi's. I would say that in most cases, we were unsuccessful in making Aldi's…

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January 17, 2017

Announcements

I’m being interviewed today

Fun fact, I'm getting interviewed this morning by Susan Wheeler-Hall BSW, NGH. Susan is an Author, Coach, Educator, Speaker and Radio Host. She'll be interviewing me around 11 am this morning. I'm not sure what we'll be talking about but it should be fun. The boys are home from school today and I'm hoping they will cooperate.. ☺

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January 16, 2017

Gavin / My thoughts

2 behavioral oddities reminded me that I’m only human

Unfortunately, Gavin's had a rough day. I feel I need to stress that this wasn't behavioral, at least in the way it would have been a few years back. The first issue is in regards to Gavin's bladder problems returning today for the first time in a long-ish time. This is par for the course with Gavin because these things pop up now and again. The first thing we will do to address this is work with the Miralax again. We had backed off a bit because everything was going well. That's all we can do at this point. As for the second issue or challenge, I think that was probably harder for me than it was for him. The problem was that Gavin required a great deal of patience…

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January 16, 2017

My thoughts

What his stomach looks like after an IVIG infusion

I wanted to take a minute and share a bit of insight into what Gavin experiences in regards to his IVIG Infusions. Gavin receives these medically necessary procedures twice a week and will do so for the rest of his life. These infusions provide him with the immune system his body naturally lacks. Without these infusions, his body would not be able to fight off infections. While these treatments are a blessing, they aren't always pleasant. The pictures below show what the infusion sites look like and it's incredibly unpleasant for him. Gavin has almost no body fat and so all the swelling is from the infusion

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January 14, 2017