Appointments, Treatments, and Bills…Oh My!

Some days I feel like I make no progress.  Then there are days, like today, that I just feel completely overloaded.  To sum up….

1. Consultation with the hematologist/oncologist regarding a possible bone marrow transplant for Hannah.  When the lady called me to schedule the consult that Dr. G., the genetics doctor, recommended, I was taken aback.  From everything I’ve read about Gaucher’s Disease, a bone marrow transplant is the last line of defense when the Cerezyme (first line) and the Miglustat (second line) do not work.  Even then, the risks versus benefits are not in favor, as it doesn’t always work.  I made it clear to the lady who made the appointment that we weren’t even considering a bone marrow transplant at this point, and she apparently knew this.  So, we are meeting this doctor on the 2nd of Febrary after meeting with the Jewish Family Services to see what they have available for us.
2. Scheduling her first Cerezyme treatment.  So it looks like they are shooting for February 6th.  We went from doing one treatment at the Infusion Clinic downtown (to watch for side effects) with subsequent pediatric Home Health visits to now doing more treatments there and no Home Health yet.  I’m not sure why.  Even though it will be a pain to drive every 2 weeks, I’m not that upset only because she will be in a more controlled environment just in case she experiences side effects or something.
3. Medical Records scramble.  I’m still trying to get the medical records from the clinic downtown for Dr. S., the Gaucher’s specialist, next month.  Supposedly, at least I was told this, they will be worked on this Monday.  I sent them in on January 9th.   I’m sure I’ll have to follow up on this too.
4. The Project Charity.  I talked with Nicole who is heading up The Project Charity, an organization that is just what I needed when I first started learning that Hannah had a very rare disease.  I’m going to work with her on a community-based and interactive portion of their site to help other families, especially those that don’t have access to experienced medical professionals in their area.   She has fantastic ideas for the future of this program, big time, and I am so excited to be a part of it and get involved.
5. Got my eye appointment in finally.  I had to postpone it three times because of various appointments for Hannah that popped up the same time I happened to schedule this.  Fortunately, my eyes are still healthy, and my contact prescription hasn’t changed (in about 15 years!).  Note to self…order contacts!
6. I picked Little Girl A up at 2:15 PM today instead of 4:30 PM at school.  She was already at the window waving at me when I drove up.  You could see the huge grin on her face.  Her teacher told me that she had been saying all day that I was going to pick her up early.  While she was getting her stuff ready, I said three different times that I won’t do this again and that she will have to stay the whole day, and she said “she knows.”  We will see.
7. Fighting with the insurance company/laboratory about this dang $400+ lab bill from three months ago.  The doctor or laboratory coded it wrong, and the insurance company won’t cover it.  Trying to get someone to fix this for us is a nightmare.   Everyone passes it off to someone else.  Now, we got a deliquency notice, and my insurance rep said that basically we should pay it now (the lab bill) instead of waiting until it hits our credit.  Great.

Other than that, nothing much else happened today!