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..
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…
The boys make their return to therapy for the first time since early December. With the holidays, there were therapists on vacation and offices closed. It's been about a month since they've been to therapy. Gavin is returning to Speech and Emmett is returning to Occupational therapy. Both boys are super excited and look forward to returning to Akron Children's Hospital..
I wanted to share a snippet of good news. Yesterday I mentioned that Gavin was having bladder issues once again. He was frustrated by this and understandably so. My concern was that we were going to see this becoming a trend and that wouldn't be a good thing. Thankfully, today seems to be a better day for him. He hasn't said anything about having to constantly go to the bathroom. My hope is that yesterday was just a fluke and things will continue to remain stable in this particular area of his life. Gavin certainly has enough on his plate, and if we can keep even one thing from piling back on, that's a very positive thing.
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…
I've been putting off a really important update recently because I'm still processing some of it, at least I'm trying to. During our last meeting (this past Tuesday) with Dr. Pattie, Gavin did another mission debriefing. This debriefing was a little different because we learned something new about the status of his current psychosis. After talking about all the adventures he had gone on since the last debriefing, I began asking him questions about what he was saying, in an attempt gain a bit more insight. These questions led to a much better understanding of where he currently resides, psychologically and emotionally. It turns out that Gavin's hallucinations are actually getting worse. There used to be a portal he had to walk through in order to be transferred from his…
Gavin's IVIG infusion has been a disaster so far. First of all, the supply company shorted us the needles needed to draw up his meds. I had to find a pharmacy that carried theses and was willing to sell me some without a script. Honestly, who would be buying these things without some a script? I guess I get it. Luckily, the Walgreen's down the street was willing to because they are familiar with Gavin and his infusion needs. Unfortunately, after I arrived home and struggled for about 20 minutes to draw up his medication, I realized that they sold me fricking filtered needles. Let me just say that trying to draw up his meds with these needles was like trying to suck a watermelon through a stir straw. Thankfully, I was…
I'm so tired and Gavin just won't stop talking. Look, I'm so grateful that all my kids are verbal and I know how hard it can be when they aren't because Emmett was nonverbal until he was almost four or five years old. We were told he would never talk, so to at least some degree, I get it. Gavin is one of those bipolar kids that talk incessantly when they are manic. My God, this kid hasn't stopped talking today. He'll disappear to his room for a bit and I get a reprieve but when he comes back, and he always comes back, he's got all this stuff pinned up and then unleashes a flurry of scattered thoughts at me. He's in the kitchen right now making a sandwich.…