I am finally getting better with the idea of kenadie diagnosis. BTW she has immuno complex deficiency disease, total dysautonomia, mitocondrial disease. feel free to look them up. I will post links on my Facebook on the type of Ivig that she will be getting. the medicine will be given through a sub q method. she can not have a port. with the immune disease she has the port can kill her. so that's out now. we are praying insurance covers it. they don't cover out amino acid therapy. please do me a favor. keep your Google results to yourself unless its a cool treatment option. I prefer to not Google it to death. with kenadie she is pretty rare anyways so I try not to worry more than is needed.
for those that dont know what an immuno disease is basically you have fighters that kill of bacteria n diseases n she does not have any fighters to do so.
the Dr will be talking to us about the adjustments that we need to make tomorrow. I have a couple worksheets that I will scan in so those who are wondering can look.
as of this moment I feel like I could have a big cry any one moment. I don't get it. but we will keep pushing on. sorry I am getting tired. I will update more this weekend.
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