Anders' GI Update

Okay.  So, for the past month and a half, we've been trying to get Anders an evaluation at the Monroe-Meyer Pediatric Feeding Clinic.  After meeting with his new GI doctor in October, we began the process.  It initially began by filling out a gigantic stack of papers...20+ pages to be exact.  It included every procedure, every appointment, medications, our current feeding schedule, etc.  In addition, we also included all of the documentation that his therapists have been conducting over the past year.  A month after we mailed all of that, we had yet to hear anything, so Philip called.  They claimed that they had not received the paperwork and that we'd have to fill it out once again.  My heart had sunk into my chest with this news...that paperwork had taken me FOREVER to fill out.  After thinking about it, I decided that it had to be in their facility somewhere.  I mean, I had a return address on it and hadn't gotten anything returned, so this had to be right.  Philip called again and asked them to look one more time, and miraculously, it was found.  Though we encountered some issues getting Boys Town to fax over their records (not the first time this has been an issue with them), we were able to schedule his evaluation for this morning.

As I didn't have to work, the date worked out well.  Quinn went to his old daycare for the day, and off Anders and I went.  Upon arriving at the Monroe-Meyer facility (on the UNMC campus), I immediately begun to feel overwhelmed.  I was told to park on the south side of the building, but as the road to get there was closed, I couldn't get there.  I ended up parking on the opposite side (in a potentially illegal spot) and wandered through hallways with no idea where I was going.  When we found the patient check in area, I told them Anders' basic information and waited to be called back.  I was very apprehensive as this was a new place and wasn't sure what to expect.  After talking to one of the therapists, Anders and I were led to a very small room with a high chair and a table.  It had one of those mirrors that they have in police stations where they can see you, but you can't see them.  I was instructed to feed Anders several different things at varying amounts.  In between, they'd come ask questions and give new instructions.  After this (I think it lasted around an hour), I met with a GI doctor to go over Anders' records and surgical history.  He verified that the fundo was not working and that our problems with Anders were both behavioral (refusing to eat) and physical (not being able to keep food in).  Although I felt close to tears after the feeding session and during the meeting, I held it all together.  We then met with a dietician who weighed and measured Anders.  After this, I met with one of the Ph.D's who oversaw the program.  She told me that Anders would need to attend the 8-week intensive therapy program (or longer if the kids would benefit from extra time).  The program meets Monday-Friday in Omaha from 9am-5pm.  After he finishes the program, he will need to attend weekly therapy sessions for 2-4 years.

Although my family and I knew this was a very good possibility, the news hit me like a ton of bricks.  We live an hour and a half from Omaha.  Philip and I both have jobs.  And what about Quinn?

As I got Anders loaded up in the car and begun the trip home, I started to cry.  How much more can I take?  The past 16 months have contained so much heartbreak.  Our youngest child has had to suffer so much.  So has Quinn.  And Philip and I...the depths of our sadness is not measurable.

I will get myself back to the point of being thankful for the tremendous number of blessings in my life.  But today I am feeling very sad.  I hope that is okay.  The intention of my posts is never to complain or make people feel sorry for us.  It just helps to get this all out.