Gavin Archives - Page 26 of 113

I’m confused but ultimately relieved after our visit to @AkronChildrens Hospital today

Let me start out by saying that this was a very good appointment and I expect nothing less from Akron Children's Hospital. They've never let us down. ☺ It's not too often that we go to an appointment for Gavin and walk out with what amounts to good news. Today was very clearly the exception to that rule. I'll bottom line it for you and then talk about something that happened while we were there. We met the doctor and he was very soft spoken. He took a lore than reasonable amount of time, answering my questions. He looked over Gavin's labs and said that truthfully, his numbers look pretty good, even when we had thought they were pretty bad. That caught me off guard at first because we've believed…

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September 7, 2018

Akron Children's Hospital / Gavin / Hematology / My thoughts

We’re back in #Hematology at @AkronChildrens Hospital

I'm in a really bad mood but that doesn't matter because I have things that must get done. The most important of those things today involves Gavin getting to Hematology at Akron Children's Hospital. I've been talking about this recently because we are finally getting in to see the hematologist in regards to Gavin's unknown blood disorder. Nothing has really gone as planned thus far but we swung by to pick up copies of Gavin's labs so we can take them with us to show the doctor. I ended up taking Lizze home before heading out because she wasn't feeling well. I can totally handle this and I need her to get some rest and feel better. I always say we have to adapt and that's the truth. It's not…

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September 7, 2018

Common Variable Immunodeficiency / Gavin / Immunology / IVIG Infusion / My thoughts

It’s really stressful when my son’s medications don’t arrive on time

Gavin is officially out of his IVIG medication and he's not been able to do his IVIG infusion today as a result. I've spoken with the home care pharmacy that's responsible for delivering these life saving medications and they're out for delivery today. That's good to hear, it really is.. That being said, why do we have to cut things so close? Why not provide an overlap because things happen and an overlap would prevent him from missing his infusions as the result of a shipping delay. That makes sense to me.. At the very least, it would alleviate the anxiety sorrounding this time of month when his supplies are depleted, he needs his infusion and the delivery hasn't arrived.. Life is stressful enough and this would make it a…

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September 7, 2018

Akron Children's Hospital / Gavin / Hematology / My thoughts

We have a very, very important appointment with hematology at @AkronChildrens Hospital today

We have a huge doctor appointment today. Actually, Gavin has a huge doctor appointment today. The bottom line is that's it's a huge appointment. We are finally getting into hematology, after trying for what seems like forever but in reality, it was about a year or so. This is a big deal because it's really the first new specialist we've seen in a long time. Gavin for the last couple of years has been dealing with an unknown blood disorder that causes his Absolute Neutrophil count to drop to dangerous levels and his platelets get very low as well. We have no explanation for this aside from it's a side effect of the Clozapine. That's a possibility but we aren't convinced that's the case. It's also possible that it can…

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September 7, 2018

Cleveland Clinic / Gavin / My thoughts / Pediatric Neurology

I’m not in a good place tonight but here’s what happened with Gavin today

I'm not in a really good place tonight. It's been an exceptionally long day and I'm not sure how to begin digesting today's appointment. This will be brief and you can then check out a few pictures from today. [foogallery id="82317"] Basically, we don't know what's going on with Gavin's legs. Neurologically, he checked out, at least in that area. That's the sorta good news. What's next is bad news but not necessarily new bad news. His neurologist examined Gavin. While he was doing so, we somehow got on the topic of Ehlers-Danlos, how Lizze has it and it's believed Gavin does as well. Basically, Gavin's skin has become extremely elasticy (I don't know if that's even a word). It's sorta like if you're wearing a pair of loose fitting…

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September 4, 2018

Cleveland Clinic / Gavin / My thoughts / Pediatric Neurology

I’m really worried about Gavin’s appointment at the @ClevelandClinic in the morning

I'm really nervous about Gavin's neurology appointment at the Cleveland Clinic in the morning. To be completely honest, I'm sick to my stomach over it. I love Gavin's doctor and I love the Cleveland Clinic. Without hesitation, I can say that they are a large part of the reason Gavin's still with us today. That's not something I could ever pay back. The appointment tomorrow is all about Gavin's problems with his legs. He's been complaining on and off for awhile now, that his legs stop working. It's tough to understand what exactly he means by that because I'm not sure he knows how to describe it or that he understands what he's talking about. Essentially, he's saying that his legs stop working because they aren't doing what he's telling…

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September 3, 2018

Common Variable Immunodeficiency / Gavin / Immunology / IVIG Infusion / My thoughts

We hit an unexpected snag in today’s plans

I feel like I slept pretty okay-ish last night. I went walking first thing this morning while Gavin was doing his IVIG infusion. We hit an unexpected snag in today's plans. The idea was to walk and then take Gavin to get his bloodwork done.. Unfortunately, the lab was closed today. I guess I wouldn't have thought they would be closed but they were. This isn't a huge deal but it cuts us closer to the deadline for getting his labs done. His Clozapine runs out on Wednesday morning and son we absolutely must get them done tomorrow. It's already going to be a busy day because of Gavin's appointment with neurology but we're going to have to make it work. I hate when we cut things this close with…

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September 3, 2018

Autism Parenting Confessions / Gavin / My thoughts

Every single day, I lose more of my son and it hurts beyond words

There's so much to catch you all up on and frankly, some of it is too difficult to talk about. I've tried writing this several times now and very quickly find myself entirely too overwhelmed to actually finish anything. Rather than giving up, I've decided to write what I can, stop when it's become too much and publish it, regardless of how it sounds. As a result, this may sound a bit choppy or jumbled but that's because it's not easy to even think about this stuff, let alone write about it. Deep breath...... Gavin stepped onto the scale today and has lost more weight. He barely weighed 119 lbs, fully dressed and already having eaten breakfast. That's at least a one pound loss since yesterday and it's worrisome. Lizze…

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August 31, 2018