I’m scared but we need answers

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 increase the frequency of infusions at home. 

Gavin would prefer to return to the hospital but we will have to do whatever is best for him, based on what the doctor recommends. 

The last thing we need to find out is whether or not Gavin will even be able to make the trip, should his wish be granted. That’s big piece of information we need to know in order to move forward. 

I’m so nervous about this and I need to keep it to myself. I don’t want Gavin picking up on that nervousness. In a twisted way, his lack of self awareness is a blessing in this case because he’s not aware of his current condition. I know how that may sound but I have to find the positive here. It would be so much worse for him if he understood what was going on. 

Please send us some positive thoughts our way. I would really appreciate it. 

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