oneyear ago I started this journey and Im loving the change
Patty you gorgeous thing!! I am so sorry to hear that Ava is struggling again, that really sucks, I have learned so much about this crappy disease in the last few months and one of the surprising things is that in 80% of the cases that get resolved with medication the condition will come back at some point. Man does that really suck it’s like a life long sentence that you never know when it will rear its ugly head. Jen is doing sooooo much better. The surgery was a huge success for the pressure within 2 days the sparkle in her eyes was back, I had forgotten how bright eyed she usually is after a year of pressure behind her eyes she always had that glazed look that said "life sucks" she walked like an old lady always afraid she was going to fall grabbing every wall or piece of furniture she walked past to steady herself from the dizziness now she is walking just fine,, she used to have trouble making a full sentence having a hard time remembering words simple words and it made her seem somewhat mentally challenged to people that did not know her before ( like the exboss) now she back to her old self. She is having one side effect from the surgery and that is the catheter that is in her abdominal cavity that drains the fluid from her head is irritating her insides so she has pain and it moves because the catheter moves so one day she will have a stabbing in her uterus are and the next it will be in her lung etc etc but it seems to be getting less and less,, We saw the neuron surgeon this week and he said they can go in an change the tube but it is not an easy surgery and because it seems to be getting better slow as it is he wants to wait another month and see if she can work it out. The option is to place the catheter in her cerated artery and that is somewhat risky as you can imagine doing anything to the heart is scary. I think its kind of like wearing flip flops between your toes when you are just not used to it its very irritating but after a while you don’t notice it and your body adjusts. at least I hope so They did not shave her head as a matter of fact the hospital nurse said that they have found that there is less likely to get an infection if they do not shave then if they do shave,, and her surgeon said he hate when his patients look like they have surgery so he never shaves if he can avoid it so that made the hole thing so much easier on her. If you ever have to get to this point defiantly look into Dr O’Neal He was and is so good. But all in all my girl is back and making strides to recooperate and get her life back. Yes I know be easier on myself :) its so hard some days,, you read about all these people that get su*****redible results right away but I know that I feel so healthy and I suppose I could be a lot better about my food choices on a regular basis. (As I eat a subway smoke house salmon sand) as I write this :) I could easily eat a whole half if I choose to. It’s funny some days I just can’t eat hardly anything and others I can eat twice what I feel like I should be able to eat. Not sure why but that is just how it is. Yes I will have to get a new picture and have mine changed, I think we should plan something this summer or spring for a family day for everyone like a camping trip or coast trip or maybe just a barbeque day Kel