Emmett’s test results came back and their very frustrating

About mid-afternoon, right before I picked Elliott up from school, Emmett's doctor called. I had left a message because we were notified that Emmett's results came back but the page that was supposed to contain the results was blank. Apparently, it was a glitch in the MyChart app. Either way, I needed them to read the results to me. Emmett was recently tested for milk and egg allergies. He used to be allergic both but he outgrew them a while ago. We wanted to make sure they hadn't begun giving him problems again because if they were, it could explain his stomach issues. At the same time, he was also retested for celiac as well. He was negative at an early age but since it runs in my family, we…

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Poor Emmett didn’t make it through the day

After waiting in the school parking lot for an hour, I went in to check on Emmett. He was in martial arts at the time and we went down to check on him. He was practicing with weapons for the upcoming tournament, which he's incredibly excited about. I could see from a distance that he was struggling and when he came over, he was almost in tears. It broke my heart to see him like this. He was trying so hard to make it through the day but he asked if he could come home. Everyone agreed that he should go home and after picking up his things, some school work, and saying our goodbyes, we were on our way. I'm glad I stayed because it sorta expedited the process…

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How is this even f*cking possible?

While I was driving the kids to school this morning, I received a phone call from Akron Children's Hospital. It was the delivery coordinator for Gavin's IVIG infusion supplies. I could tell by the frustration in his voice that I was going to need a few minutes. I spoke with him before walking the boys into the school and working on the Emmett stuff from the previous post. Turns out Gavin's supplies aren't here because there's another nationwide shortage of his life saving medication. It's literally impossible to get and the only option is to switch him to a new medication for a third time. This is never a good thing because we have no idea if the medication will work for him or if he will have a bad…

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It’s killing me to see Emmett like this

Lizze and I have been bombarded with challenges this morning. Right now, I'm going to focus on the Emmett related ones. Emmett woke up not feeling well again, and struggling to get off to school. We're trying to find a balance between getting him to school and keeping him home because he's in too much pain or discomfort. It's not easy but thankfully, Emmett desperately wants to be in school, so if he ever doesn't want to go, we know something is wrong. Lizze tackled lunches and I worked with Emmett to come up with a plan that got him to school but that he was comfortable with. He ended up being willing to try for a little while. We got to school and I spoke with the office, his…

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Gavin’s #IVIG infusion supplies never showed up and that worries me

Without going into the backstory again, Gavin is on IVIG twice a week because of his severely compromised immune system. You can read that backstory here. We received a notice from his insurance that they were no longer working with his current, longtime supplier and would be switching to a new company. This is potentially very problematic because this needs to run like a well oiled machine or there can be delays in his deliveries and that could potentially be life threatening. Lizze and I haven't even had a chance to call about this and we're already having a major problem. Gavin supplies were due to arrive last Friday and they never did. They also never arrived today and that means he's missed his infusion. He's missed quite a few…

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I took my 3 #Autistic kids to the dentist today and this was the result

We're finally home from our out-of-town trip to the dentist. I ended up having to take the boys on my own. Lizze was ready to go with us but it was obvious that she was really, really pushing herself. As much as I needed her help and as much as I truly appreciate her willingness to go even though she was in so much pain, it was best for her to stay home. The boys and I left around lunchtime and made it there a few minutes early. It took about 45 minutes to get there and traffic was pretty good. Elliott was on the verge of a panic attack because all doctors terrify him. We're not sure what that's all about but he's always been this way and there's…

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I’m taking my 3 #Autistic kids to the dentist this morning

Later this morning, I'll be taking all 3 boys to the dentist. If that weren't challenging enough, I may be doing this alone. Lizze was sick for most of the day yesterday and I'm not sure how she's doing today. I know she wants to go but there's only so much she can do. I'm not super thrilled about this but we'll figure it out. I don't anticipate any issues while at the dentist. The only one I know who has a potential problem is Emmett. He recently lost a tooth with a metal cap. The tooth behind it appears to have been damaged by the metal cap. It's hard to describe but it's only a baby tooth, so I don't expect them to aggressively do anything. Emmett isn't in…

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How do you prioritize anything when everything is a priority?

As an Autism and Special Needs parent, I've found it very difficult is prioritize things. In a more typical situation, I would be able to decide what's important and what can be put in hold or brushed aside. Unfortunately, in my life, it's not that simple. Everyone in my house has very demanding needs and all of them are of equal importance, especially to the person concerned. While there are things that can always be put on hold, usually everything that's considered more everyday life kinda things, the vast majority can't. It's very difficult for me because in order to meet one person's needs, it feels like someone else's will have to go unmet and that's not okay. If one person has a 100 things that require their undivided attention,…

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