4th Birthday Photo Session

4th Birthday Photo Session

Tuesday, July 9, 2013

Little Bumps o' Success!

Mentally getting ready for the CHARGE Syndrome conference coming up in two weeks.  Well, we leave on a Monday and return on a Monday - but that's because we're flying a no-name airline out of Eugene, OR and into a regional AZ airport.  Hey, it was considerable savings to us - so... we went for it.  The conference is really Friday - Sunday with what I call a "mingler" on Thursday night.  We've made this trip our big yearly 'vacation' and it has been grueling saving up for it after just paying off the stupid roof.  We've made some adjustments, but I think we're ready.

We just got the test results back from Andi's yearly ultrasound follow-up.  Last June, Andi had that "bladder deflux" procedure where they injected what became 'mounds' in her bladder to prevent the urine flowing upward (reflux) toward her kidneys.  The procedure worked.  The ultrasound showed that everything still looked great.  They want to do yearly urine tests and blood pressure, but if we continue to have no more UTI's, then we won't need to any more ultrasounds.  YEA!  Her Dr. said that if she's potty trained we can have her pee in a cup, otherwise, they will have to catheter her and she will not like it.  We haven't made much progress on the potty training.  She will sit on the potty but not "go!".  She will tell me "stinky" after she goes, but not before.  I haven't been super diligent in putting her in underwear and asking her every 20 minutes if she has to sit on the potty.  Who has time for that!?  Again, I maintain - there should be a potty training academy where you can send off your youngings in diapers, and they come home from camp in underwear, fully potty trained.  I know, I know... I can do g-tube switches, replacement, I can dose out med's including serious controlled substances, I can do TPN in a central line... but potty training seems a bit much!??!?!?  Yeah, okay.  Maybe it's just me being lazy and impatient.  I would like to forego the horrid expense of diapers though.  We got hooked on Pampers Swaddlers in the hospital and I can't seem to stop loving them.  They ain't cheap though!  Ugh!  So, potty training camp... surely someone offers it!?

This Friday, Andi goes to see the ENT Dr. again about the chronic ear infections. I think we're looking at getting a new set of tubes put in, but we'll see what he says.  Last audiology appt. they said the left ear looks very red.  Lately, I've been noticing her right (good) ear smelling like a dirty, wet belly button... so I can't imagine that's a good thing. 

Today, Andi started her summer session of preschool!  Today it was just her and her favorite classmate, Josiah.  I believe there will only be three of them this session, as the others seem to be taking the summer off.  Andi apparently is doing really well, although there was a little boy whose first day was today.  At the end of the school, I picked up Andi to find her and this new boy sitting for songs.  This little boy was so much more verbal than Andi.  It made me sad.  She's doing great, but to see another kid that is so much further ahead, is hard to swallow at times.  But, we'll keep plugging on and marching forward.  On another note, the teachers were all super stoked to see Andi walking in holding my hands this morning.  She is definitely getting stronger, even in these past three weeks.  She is eager to walk, most of the time.  Oh shoot, I just realized I haven't posted her video here! I have gotten so bad about regularly posting on her blog.  Here's evidence of our latest trick!  She's getting stronger everyday. 

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