Overwhelmed

There is so much to talk about, but I just don’t have the real desire to do so right now.  I will most likely elaborate at a later date, but I want to make sure that I put it here so that I remember to do just that.

Audiology appointment yesterday was fine.  Hannah’s peripheral hearing was fine, and her middle and inner ears are clear.  The audiologist offered to do a non-sedated ABR on Hannah to see how hearing is since Gaucher’s disease affects the hearing in the respect that what she hears and what is actually being heard become two separate things.  Basically, it would be like me saying “Hello, how is your day” and you hearing “Heshkok, felso difm wsh.”   We were originally going to do one back in February, the normal sedative kind, but we just had too many concerns about sedation.  I have a feeling we may be doing  one at the NIH next week, so we may get answers on that then.

The Parkinson’s doctor appointment went well.  It wasn’t exactly as I had hoped, but they were very open to my concerns, and he was open to looking at possible treatments for some of Hannah’s neuro issues from a different perspective, his perspective.  He was aware of the recent link, but he admitted that there is so much that has to be looked at.   He asked if he could take a video of Hannah, and he is going to present her and her case to his Parkinson’s group at their weekly meeting next week to see if anyone has any suggestions or ideas on how to get more involved.  They agreed to be part of Hannah’s “team,” which is a great thing.

NIH Visit.  Getting ready for that next week.  We leave Monday morning.  Had a horrible time getting the medical records from TCH.  Requested them 5 weeks ago, confirmed they had it 3 weeks ago, apparently “never had it” 2 weeks ago.  Went to the office after Hannah’s last Cerezyme treatment on 6/29 and paid for a RUSH service and filled out a new form.  Called yesterday, and they couldn’t find it, and the manager had “gone home already.”  Called first thing this morning, and they couldn’t find it again.  I faxed over the receipt, and the manager said she would have it done immediately and that we could come pick it up at noon.  Daddy went over there at noon, picked up the book of Hannah’s records, and sent them FedEx to the NIH this afternoon.

Getting the kids ready for California.  Mom comes in Friday night.  I’m looking forward to seeing “my mommy.”  She, Ethan, and Abigail leave Saturday afternoon. 

Hannah’s first birthday party plans.  Since we will be in California for her actual birthday on 7/25, we are having her party the weekend after here at home.  I’m so looking forward to this.  More than anyone can possibly imagine.  After yesterday, I just keep hoping to keep her trach-free for her birthday.

As for the trach issue, I still don’t really want to talk about it.  I know, me not want to talk about something.  But I decided to wait to see what the evaluation at the NIH says about the issue before really getting obsessed with depression over this.