Jude is still having terrible attacks. I am not sure what's going on. Like I stated before I think this is just his new normal. He cycles through having a normal week and then going into these terrible weeks.
I put a call into his neurologist to see what they suggest. It's just no way to live and I feel really bad for him.
2 comments:
This is similar to what Reagan's been going thru for 5yrs now. The constant cycling between good/bad days. Some good stretches last longer than others...sometimes it seems like she just can't catch a break! It's awful, but on her good days she's SO good...we try to just appreciate those days and struggle through the bad! Time is the only thing that has ever helped her cycles. (All of this started right around the time she had a muscle biopsy surgery, we think the surgery or anesthesia triggered a decompensation event that we've been dealing with the effects ever since!)
I am a nursing student and parent. I am writing a paper on parent blogs with children with illnesses and came across your blog. I just have to tell you how amazed I am by your strength. I am sure a lot of people tell you they cant imagine how you do it and it's true. I've been reading your blog for hours and your joy and heartbreak are so beautiful. I know you must struggle everyday but I think you are an amazing advocate and incredible mom. I don't even know what to say to you other than your family is in my prayers and I think your strength is really incredible. Thank your for your blog and sharing your sweet family. You are a blessing to your son and those around you.
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