All’s well

Dani had a pretty good week.  We heard back from the doctor and Dani will not need surgery at this time.  Her obstructions are mainly positional and we will repeat the test in 1 year.  Dani got a letter from the insurance authorizing 5 more RSV shots, but when you read the letter closely, the dates were expired.  We thought it was weird they would cover this expensive shot when they have been denying pretty much everything else.  We got the letter this week that Dani will NOT get the RSV shot.  I think it will be one long winter.

The Wellness center had a Halloween party that we went to.  The kids had fun, but a little annoyed that Dani only lasted 1 hour.  We were impressed she lasted that long.  As you can see, we have the Star Wars theme with the girls.  Jasmin and Joana came with us.  Dani lasted longer than Jasmin! 

Ok, ok…. I know it has been a long time since I updated…here goes…

We got the results of Dani’s sleep study.  She averaged 24 obstructions when sleeping but good news; she did not drop her oxygen levels during these events.  These are not thought to be due to her position.  He is going to watch her sleep study to see if indeed this is the case.  IF so, he proposed to take her tonsils and adenoids out.  The theory is that would create a bigger airway for her to breathe.  Then the sleep study would be repeated to makes sure this high number of 24 was improved.  In case it does not improve the next step would be putting Dani on a CPAP when she sleeps.  He explained if her tonsils are in the way, it would be wasted effort to put her on the CPAP. 

Her weight is up from her latest hospital stay.  She is up to 26.7 pounds and is 36 inches!  I finally got her worked up to bolus feedings again.  No more continuous feeding!  Dani’s feeding pump does not hold a charge and to our luck, the brand she uses is discontinued.   So, it looks like the insurance will be purchasing another pump for Dani.  That is, as long as we can get it approved. 

We got a busy next couple of weeks.  Halloween, Beans and Dan’s birthday, Thanksgiving, and Kaylee’s birthday.  Before you know it, Christmas will be here…

BAD HAIR DAY

Well, Dani got back at me for picking on her bad hair day.  First, she did her crying out at 5:00 am, 5:30 am, 6:00 am and 6:30 am.  Second, she peed on my hand as I was changing her diaper.  Third, she threw up while doing her thumper machine.  Then she topped it off by pooping in her thumper machine.  Oh no, it couldn’t be the poop that would be contained in a diaper.  It was the runny kind that went everywhere!  Note to self: never make fun of Dani!

Yesterday, we spent the day in Brookings.  We celebrated Grandma Donna’s birthday. 

Dani is now keeping down her feedings. She is still on a continuous feed.  We have been playing with her medication at night.  The doctors are not sure what she is doing by waking up screaming.  At first it worked to up on her Baclofen and Neurotin at bedtime, but the last two days, she reverted back to the screaming.  It is like she is in pain.  Maybe one day she will reveal this latest mystery.