I'm posting about his surgery before it happens in hopes that I will be better about keeping up on the blog. So after finally talking one on one with the hand surgeon and him taking time to look at his hands agreed that surgery needed to be done sooner than later so we are doing it tomorrow. I am so excited for him, his hands have been really bothering him lately and within the past month he has lost a lot grip strength and his fingers have really started to curl. If its anything like Nathans surgery he felt so much better it was great I'm hoping for the same for Easton.
We also just returned from NC where we did his testing I haven't heard the results yet but I'm betting that he has improved in all areas. I will let everyone know as soon as I find out. He also received dose 31 and again he was struck with a severe headache. This time its onset was much quicker than in the past and the vomiting was a little worse. I'm hoping they can figure it out soon because these headaches are becoming unbearable for both of us. I'm thinking that we might need to go to infusions every other month or something like that. He has missed multiple doses in the past due to surgeries and recovering through all of the missed doses we never seen any decline or signs of regression. So in my professional opinion I don't think he needs it every month however I think they will find that this drug needs to be tweaked to each boys severity and how their body responds to the drug. I guess we will see what happens.
These are are newest family pics. My kids are so beautiful. I can't get over how lucky I am to be their mom. They are all such good kids to. And now I'm done with the bragging (but with these guys you can't blame me)
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