Much needed update!

Wow! I can't believe it has been three weeks since my last post!  I would ask where time has gone, but unfortunately, I know exactly where it has gone!  :)  We've had some rounds of colds and illness (including pneumonia) for the last few weeks, and I have had very little time to do anything besides cover the basics!

Okay, so where to begin....let's start with the swallow study.  As we all suspected, Rebekah failed her swallow study last week.  She aspirated thin liquids, so she is restricted to nectar-consistency or thicker beverages.  She did well on thickened liquids and solids.  Just as part of our trial-and-error trying to figure out how to best help Rebekah drink, we have discovered a few interesting facts.  First, Rebekah does much better with room temperature or warm liquids than she does with cold.  For example, she does great with tap water, but tends to aspirate more with ice water.  So we make it a point to try to give as many room temp drinks as we can.

Rebekah loves to do "school" with her brothers! :) 

The other thing we found is that Rebekah does much, much better drinking from an open cup (with no lid) or a straw, versus a sippy cup.  The motion of tipping her head back to drink from a sippy leaves her airways wide open and unprotected, which leads to more frequent aspiration.  Using an open cup, or straw cup keeps Rebekah's head more level (or even tilted down slightly), which helps her to naturally protect her airways when she drinks.  We haven't found anything that is 100% foolproof as far as eliminating aspiration (other than restricting drinks altogether), but we have been able to greatly reduce the number of incidents that she has had.

 Sweet Caleb

Cute little story here - Caleb fell asleep on the couch one day last week.  He was so cute that apparently Rebekah felt the need to give him kisses.  Maybe it's the only time he is still long enough for her to kiss!  :)  If you think of it, please pray for Caleb.  He has been running a fairly high fever since Saturday and started coughing yesterday.  This is exactly the same way Aaron started out with what was eventually pneumonia.  We are heading to the pediatrician in the morning to hopefully get some antibiotics before Caleb gets to pneumonia.  Also, please pray that Rebekah doesn't come down with this particularly nasty bug.  Aaron was sick for almost three weeks, and he doesn't have any of the extra medical challenges that Rebekah has.

 Gotcha!

Some friends of ours took a trip to Disney in December and brought Rebekah her very own authentic Mickey Mouse!  Can we say that she is in love??!  She was absolutely thrilled with her Mickey, and it has a permanent position in her bed now.  :)  Each of the boys also received a special gift from Disney, and they were all very excited.  Thank you so much for the gifts!!

 Rebekah loves her Mickey!

So, the other big test Rebekah had since the last time I posted was a sleep study.  Boy, was that crazy!  Those of you who have lived through a sleep study know what I'm talking about.  :)  Those of you who haven't - be very, very grateful!! :)  Let's just say that it should be called a non-sleep study.  Rebekah did actually sleep for most of it, albeit extremely restlessly.  I, on the other hand, heard every moan, cry, whimper, beep and buzz along with every time the technician came in the room with a flashlight to readjust something.

 Yep, I'm cute!

To start with, there was an hour-long process of getting Rebekah all hooked up to the monitors.  She had 20-something leads on her head (read: in her hair!), another half dozen or more on her face, five on her chest, some on her arms, two on each leg, and a band around her chest and another around her stomach.  And she was supposed to sleep with all of that on!!

The leads on Rebekah's head were first coated with a rubber cement-ish type of vaseline substance.  I'm not really sure how else to describe it.  It was kind of pasty like vaseline, but was gloppy and sticky like rubber cement.  Except it wasn't permanently sticky.  Yeah, bath time that morning was loads of fun.  Her hair was so sticky and frizzed out that I could barely stuff it all into the hood of her jacket to take her to the car to go home.  I have to say, though, that the advice from the technician was great.  We wet Rebekah's hair in the bathtub, slathered on loads of conditioner, let it sit for five minutes or so, then rinsed it all out.  Then we shampooed, rinsed and conditioned again.  It really did work to get almost all of the goo out of her hair.

So what did we find out from the sleep study?  We don't find out until next Monday.  :(  The technician did tell me before we left, though, that they were able to get some good information, so that was encouraging.  We do know from our initial consultation with the sleep doctor that he felt like THE INCIDENT sounded more like central apnea than obstructive apnea.  If that is the case, then Rebekah will have a referral made to a neurologist for a consult and probably an MRI.  He also said that it is rare, but possible, for a child to have both central apnea and obstructive apnea.  We will find out for sure on Monday.

Rebekah was also evaluated by her speech therapist two weeks ago.  She usually checks in with us every six months to see how Rebekah is progressing, and we had decided to wait until after Rebekah's most recent surgery to begin therapy for Rebekah's nasal speech (a result of her high palate/larynx abnormalities caused by DiGeorge Syndrome, NOT because of the paralyzed vocal cord).  Anyway, Rebekah's vocabulary is far above average for her age, as is her receptive language.  Rebekah will begin speech therapy next week for 30 minutes/week to work on her articulation.  Just to give you an idea - her therapist was able to pinpoint some of the nasal sounds that Rebekah makes.  Rebekah's t's and d's sound more like n's.  Her b's and p's sound more like m's.  One of the words that we really pick up on this is today.  It sounds very much like noo-nay.

Ahhh...the hair is much better!  :)

That's about all for now, I guess.  We are waiting to see what the sleep doctor has to say on Monday.  We're also praying that Caleb doesn't develop pneumonia, and that Rebekah doesn't catch this illness.  Thank you for praying for us!

Nancy