We have been seeing the pediatric hemotologists at Arnold Palmer Hospital Hemotology/Oncology Clinic since Anthony was a week old. I love the staff there and wouldn’t even dream of going anywhere else for Anthony’s treatment. You can pretty much bet that as long as we live in Florida we will be going there. That being said our nurse practitioner of the past 3 years is leaving at the end of the month. I am as heart-broken over this as a person can be. Miss Virginia has held my hand and led me through this whole process since I was a scared 18-year-old with a newborn that had a genetic disorder to the woman I sit here as today who is more than capable of taking care of business. I will be so sad to see her go =[. On the bright side our other favorite nurses and doctors won’t be leaving with her and I have complete confidence that she will be replaced by someone equally as wonderful.
Our hospital trips are always an experience but today was I’d say the least traumatic one that Anthony has had to date. He held his little arm out as Miss Mimi put the IV in and held it there like a champ. Before it was more of a thrashing fit of small child fury including screaming, crying for help, my pleas to calm him down, and of course the ever pleasant rip the IV out with his teeth routine that Anthony was so fond of. This is sort of a bittersweet moment for me; I am thrilled that he is capable of getting his treatment without freaking out about it but no small boy should ever be so used to getting stuck with a needle that he can take it without tears or even a little bit of fear. I guess its to be expected but as a mom my whole world would be complete if he didn’t have to behave better than I do when presented with a needle.
We have even more news! Anthony’s next appointment has been moved up from October to August. They have decided it is time to talk about prophylaxis. Prophylaxis can be best described as ‘preventative medicine’. Rather than waiting until Anthony has a giant bruise or is bleeding waaay too much to give him factor twice a week wither a nurse will come to us or we will visit the hospital and he will receive his medicine. TWICE. A. WEEK. That’s right, two times in a 7 day period Anthony will have to get an IV to receive this factor. Now I know some of you are sitting there thinking well it’s not that bad or it could be worse. Please stop being a butt and ask yourself when the last time you had an IV was and for that matter when is the first time you remember having an IV? Because for Anthony it will be so normal he won’t know any different. He won’t remember a time when he didn’t see his doctors twice a week and until he’s older he’ll think it’s something everyone goes through. Now please remind yourselves that his isn’t even 3 years old yet. It is that bad or at least I think so. His veins will eventually collapse and he will have a port surgically placed in his chest and connected to main artery so he can continue to receive his medicine. And this will happen for the rest of his life. My heart bleeds for what he is going to go through and I hope that the rest of you are feeling it also. Spread the word. Donate. Save my little boy. Please. More pictures on facebook.com/hemophiliaAndhim