This is why I get so frustrated
There are so many things we have to deal with as special needs parents. This is one reason why I get so frustrated.
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February 10, 2018
The other shoe just dropped
Anytime we get even a tiny bit of good news, deep down inside, we're waiting for the other shoe to drop. There were three things that I needed to go well today. One was Gavin's lab work, another was Ruby's appointment and finally resolving whatever is causing problems with his Clozapine prescription. I'm not sure what to think about Gavin's labs (see Why good news doesn't always make me feel better), but Ruby's appointment went well (see The first solid piece of good news this week). The last thing has to do with Gavin's meds and that brings me to the other shoe that just dropped. There was a delivery of medications this afternoon and dispite being promised they would fill it, the pharmacy still didn't have Gavin's prescription ready.…
February 9, 2018
Why good news doesn’t always make me feel better
I just got an email from Gavin's doctors office in regards to his labs from yesterday. The results from yesterday have his Absolute Neutrophil count back up to 3.0. The number is still on the lower end of things but it's significantly better than it was yesterday. What worries me is the why. Why are the numbers so drastically different? Did the lab make an error the first time? What if the lab error is this time around? Is it even possible for the numbers to fluctuate so rapidly? I don't know what to think and I'm waiting to hear back. The only other thing we could do is run his labs a third time and see where we are but I don't want to put Gavin through that. I'm…
February 9, 2018
Exhausted, stressed out, worried and overwhelmed
Gavin's feeling better this morning and the boys got off to school without much trouble. Lizze is having a rough morning because she had a really difficult day yesterday and didn't sleep well last night. I'm pleased to say she's currently napping on the couch for a little while. I hate the idea of waking her up but we have to get ready to take Ruby to the vet, and she wants to go. Hopefully Ruby's appointment will go well and we'll be home before we know it. I'm still waiting on Gavin's lab results as well as the delivery of his Clozapine prescription. In the spirit of honesty, I'm very preoccupied with worry about the results of Gavin's labs from yesterday. There's a really good chance we're going to…
February 9, 2018
Gavin went to bed not feeling well and I’m worried
Gavin had a really stressful day yesterday. He did great with having to get more bloodwork done but it took a lot out of him. As the day went on, it was clear that he was at the end of his rope. The boys were being annoying, as little brothers will be, but Gavin didn't have as much patience as he usually does. After dinner, he ended up with really bad reflux and it took quite a bit of work to help him feel better. He went to bed tonight still not feeling 100%. I don't know if the reflux was stress related or if it was something he ate. Maybe it's a little bit of both or something else all together. I'm worried about him and there's nothing I…
February 9, 2018
My days don’t get much harder than this
It's been the longest, most stressful day I've had in a long time. There are two main reasons for my current level of distress and both are related to Gavin but not his fault.
February 8, 2018
The doctor called with heartbreaking news
I received a call today from Gavin's doctor. When I saw who it was, my stomach knotted up and my heart sank. They never call unless it's bad news. I was right. Apparently, Gavin's numbers are crashing again. I'm currently waiting for him to come out from having his labs drawn for the second time in three days. I didn't get all the numbers but they informed me that his Absolute Neutrophil count (ANC) dropped from 2.9 to 1.8 in less than a week. This is not a good thing and I wish I knew what was responsible for this but no one knows for sure what it is. The most likely culprit is the Clozapine but it's also possible it's part of his CVID (Common Variable Immunodeficiency) as well.…
February 8, 2018
When your special needs kid turns 18, there’s a ton of shit you have to worry about
We just finished meeting with Social Security. Gavin has to requalify for permanent disability now because he's eighteen years old. The appointment only took about an hour and that's not too bad. I felt terrible because there were people without appointments who'd already been waiting almost five hours for a possible walk-in appointment. That absolutely sucks. Anyway, we answered all the necessary questions and they were really good with Gavin. Now we wait four or five months and see what happens. I'm still his payee and there was no paperwork needed for that. When Lizze and I gain permeate guardianship, I'll have to submit those papers but it doesn't really change anything. They will be pulling all of Gavin's medical records since his last appoval and using that to determine…
February 6, 2018
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