So what is our 'normal'?

Well, anyone who has hydrocephalus or knows someone with hydrocephalus is aware that everyone is affected in various ways and the 'signs and symptoms' that one should look for are different.  We are still learning really what is Willow's true trigger since her biggest issue with the shunt is not a malfunction but instead the shunt itself. :(  She is still allergic to the system, and so far not showing any signs that her body will accept it any time soon. Her surgery the first week of April was strictly due to her being allergic to the material, not a malfunction or infection but an allergy.  The problem is that being allergic to the shunt is quite rare, I have only found about a handful of cases reported with this same issue.  The treatment for such an issue is to use an extracted shunt or polyurethane shunt system; well guess what?  She has that and is still allergic to it.... Sense my frustration yet?

I am really beginning to grow much more exhausted and frustrated as she is now once again fighting fevers (she was up to 100.2 last night) I know that isn't really a fever but since her normal is 97.7 her doc. feels it is at least a warning... She also has an ear issue we are fighting this week, either a blown ear drum or an infection and to top it all off, she woke up this morning with her right eye full of gunk yet again.. All of these are the little things that add up to yet again another reaction to the shunt.

Are you kidding me?!

Evan's birthday is Wednesday, and I cannot even feel comfortable planning a party for him because I am afraid to end up back in the hospital soon and with Jon's work schedule who would put on the party?!  So, as much as he wants a  party I think I have come up with an acceptable substitution... Either Jon or I will take him to a movie of his choice (or maybe craigs crusier/chuck e. cheese); just him, not his siblings so that he feels it is special for him.  Then this weekend we may invite a few friends over to hang out (if weather is good) and have some cake/ice cream... Then its not a big party plan and we can all just get along.... hopefully anyway.

So for you all who love your Willow updates, please once again, keep the wobbly princess (oh yeah she has no balance currently) in your thoughts, prayers, well wishes because I am almost too exhausted to do so.

Comments

The Haus Family said…
I'm sorry you all are having to go through this. She is always in my thoughts and prayers.

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