Sep 19 2020
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 …
Oct 03 2020
It’s been a long day but a pretty good one. I didn’t write yesterday cause I was not really in a place where I felt like writing. I spent the time connecting with other parents instead and that was really cool. Yesterday, I had to take Gavin for another round of blood work, this time …
Feb 19 2021
It’s gonna be a hectic day. I have a two hour meeting after lunch and it should finish up just in time for me to get Gavin to the health department for his second dose of the Pfizer COVID vaccine. I’m a little concerned about how Gavin is going to handle the side effects. More …
Aug 27 2020
I’m going to make this quick because my brain is completely fried and the rest of me is equally as exhausted. Gavin’s labs came back today and some of the results appear to be very concerning. The reason I say appear to be concerning is because I’m not a doctor and I have only a …
Apr 15 2020
We had some moments today but overall, I feel like we had a good day. I wasn’t feeling quite as overwhemled as I have been and I was able to get some groceries delivered this afternoon. I feel very lucky to have had that all work out today. Unfortunately, that’s where the good news ends. …
Nov 30 2020
It’s been a really challenging day for about a million reasons. I was going to touch on some of those reasons but yet another issue has made itself known and this is going to be the priority until I know otherwise. Gavin is running what is a low grade fever for him. He’s very much …
Dec 12 2020
I know some of you may not get how unbelievably awesome this is but I’m sure you’ll be excited for Gavin nonetheless. Gavin has made it very clear that he wants to live with peers or other people his age, likely walking a similar path in life. Lizze and I have been talking about this …
Jan 08 2022
As the title states, the coolest thing happened today. I’ve been talking about Gavin’s ever-growing level of independence, and today marked a big first for him. Gavin gets his IVIG Infusion supplies delivered every month. He organizes them into kits and even does the infusions on his own. I have almost zero involvement in the …
