Sunday, February 24, 2013

It's hard feeling this way, it's hard to wait..

Its now sunday night and a pretty quiet weekend (an ok thing) while really trying to not think to much about what might Dr.Bragg decide (w the Neurologist she planned to talk to tomorrow (monday) ) regarding my case and our on-going shunt issues. It's one thing to try and not think to much about something and an entirely different thing to actually keep it out of your conscious thought.. =?

In between alot of time finishing prepping my sunday school lesson on Friday night and Sat (to in turn have just one kid show up!) I spent a fair bit of time trying to find articles talking about 'meningeal thickening', GAG storage in the brain, (Can I just say why isnt this being studied more???)  Obstructive Hydrocephalus in MPS I, (again not much actual useful info) and other possible insightful brain related MPS I sources. =/ ARGGHHH!!
In all actuality I feel just as frustrated with just as much a lack of information and wish, just really wish some researchers would take an interest in the headache/storage issue in the CNS of MPS I pts. It's a very real and under-studied issues so whats the issue??

I dont know that I will know anything tomorrow but when I get home from ERT (infusion) god willing if I have heard from Dr.Bragg and she has any news or updates or if she was able to talk to this Dr.Hsu (Neurologist) about me I will post here. I probably wont take my laptop with me but if I hear anything early in the day (very unlikely) will post to fb as well.

 Please say a prayer she is able to talk to him and they can come up w a plan to potentially fix the shunts better.

I pray we can figure out a possible solution to try,


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