A major milestone and why it’s so important

We began the new year with yet another IVIG Infusion for Gavin. He needs these twice a week because his immune system is severely compromised. These infusions literally keep him from succumbing to things that most people's bodies will fighting off without them even knowing. This is a very serious, life threatening condition and there is no cure. In all the years we have been doing these infusions for Gavin, this is the first time that we're going into a new year with Gavin performing this procedure completely independently. This is such a major milestone for a kid who's terrified of needles because this process requires him to stick two needles directly into his belly. He's come such a long way and I'm so proud of him for learning to…

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Wishes Can Happen: Pictures from Universal Studios (Day 4)

We had a pretty awesome day, and spent a large part of it at Universal Studios. We were very realistic about the kids limitations and rather than trying to create in as much as we could, we instead focused on what everyone wanted most. Our priority was everything Harry Potter and we managed to do just that. The weather was really crappy and it rained most of the time but that didn't stop us from making the most of our opportunity. Lizze and the boys picked out their official Harry Potter wands and aside from almost having a stroke when I paid for them, it was such an amazing thing to see the looks on their faces as they swished and flicked. ☺ We spent a few hours walking around…

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Gavin just finished a very painful infusion

Poor Gavin had a really rough IVIG infusion this evening. Everything went as it normally does but for some reason it was really painful. Every once in awhile, Gavin's infusion will be incredibly painful. I haven't a clue as to why this is, but it could be related to something as simple as needle placement. Maybe the needles were sitting funny or for some reason, the medication burned as it was going in.. Thankfully it's over with and the pain has subsided but I really hate when any of my kids are in pain. 🙁

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How do I protect my son when it’s his own body hurting him?

I received a call from the pharmacy this afternoon. He was calling to let me know the results of Gavin's lab work from last Friday. The labs came back and it's bad news. Gavin's WBC is at 3.9, down from 4.8 (8.08.2017) and his Absolute Neutrophil is at 2.2, down from 2.8 (8.08.2017). I'm so worried about him that I'm getting sick to my stomach. I've spoken with immunology to make sure they are aware but we are being referred to hematology and oncology. There's a particular doctor we are being referred to at Akron Children's Hospital who's supposed to be one of the best when it comes to blood disorders. I'm currently waiting for an appointment and the appointment is waiting for a referral. All that is being worked…

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I’m hoping for good news today

After I get home from walking today, I'm going to devote the rest of my day to finding out the results of Gavin's lab work from last Friday. We need to know where is numbers are because they've been dropping very low but also because he's been getting sick for the last week. If his numbers are low, that could be why he's been getting sick and it's something to worry about. If his numbers are okay, then we have far less to worry about.

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I wouldn’t wish this on anyone

I'm still waiting for Gavin's lab results to come in. I hate these waits and I wish we could receive the results directly from the lab, rather than wait for the doctor to call. It's not like we need anything interpreted. I simply need to know what his numbers are. Waiting for answers like this is unbelievably stressful and I wouldn't wish it on anyone.

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I’m scared but we need answers

Today is a really big day because we will be making the trip to Cleveland in order to visit the immunologist. I'm unsure of what to expect because we don't know what is causing this issue with Gavin's blood.  One of the things that concern me is that I haven't been able to get the results of Gavin last blood draw from Tuesday.  There are several things we hope to learn at this appointment. The biggest is what are we going to do about thays happening to him. That's something we may not have an answer to until we know what's causing his levels to drop in the first place.  My thought is that we will either be returning to the hospital to do much larger infusions or we will…

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Here’s what we’ve learned so far today

I'm still unable to reach the nurse who let's me know Gavin's lab results, but I do have something to share in the meantime. I received two followup calls from Gavin's immunologist's office this morning.  The first was to check and see how he was doing today. They also wanted to find out his lab results from Friday. I'd forgotten to relay those to them Friday's afternoon. I was too distracted and I screwed the pooch on that one.  I received the second call after his doctor heard the results of his labs. She wanted him scheduled and seem with her as soon as possible. She's not liking the fluctuating levels, and frankly, neither do we.  We will be driving him to a Cleveland on Thursday and from there, figure…

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