Thursday, November 19, 2009

A Glance Into Our Day

So, this is what we did three hours, sit in clinics for over three three hours home.  Due to my children's syndrome, Pierre Robin Sequence,  they are followed by an ENT every six months.  Lily has a tracheostomy, and our lovely ENT is the primary doc for the trach.   She also follows P with his hearing and ear tubes.  Today was a big day!!  Here are some highlights.....

--I was late.  Really, really late to our first appointment.  There are a lot of things I should worry about more, like keeping up on laundry.....not talking so much on my cell phone.....taking out the diaper pail bag to the garage more frequently....BUT....I hate to be late.  I get very anxious and, well, impatient.  Usually, I am on time to these appointments, even being three hours away, five kids, packing medical equipment, food, etc, I am on time, by golly!!  Not today.  I was, gasp, thirty-five minutes late.  THIRTY-FIVE minutes.  Is your heart racing like mine, just reading that????  Are your palms sweating??  Mine were.  I won't go into why I was late, it had something to do with five men taking waaaaay too long to change my oil, my husband assured me that it wouldn't take long.  We had an unexpected bathroom break....can't they hold it??? AND, I got behind a little old lady who was driving so slowly in the parking garage , I could have gotten out and pushed her old sled up the ramp quicker than what she was moving.   My darling 15 year old reminded me of charitable behavior as I ranted over her slow crawl through the garage.   Did you notice how I said I wasn't getting into my reasons for being late, and then I did it anyway???  Because I was late, I ended up missing Lily's speech therapist, and had to change our plans and go to another clinic for her pre-op history and physical, at the end of the day.

--I held two kids, at their special appointed the ENT and her nurse took turns picking out wax out of their ears.  My kids are champion wax producers.  They get this from their father.  I don't produce wax.....I quilt and knit.  We were all sweaty and a little worn out at the end of that episode.  The chunks of wax could have been sold to a candle making cottage home industry.  Remember, I candle making.

--I relayed to my current ENT the story of how one time, years ago, when I was holding a child down while their ears were cleaned out......I accidentally kissed the hand of our former ENT.  My cherub was in my lap, and I puckered up to kiss their dear head as they felt like their brains were being picked out of their ear...I am sure......when instead I kissed this man's hand, that was resting on cherub's head, to give him just the right leverage to get the wax boulder out!   Just a tad embarrassing, given how we all joked what a good looking guy he was (true).

--P got his tube out that has been in his left ear for years and years.  He did great!! Dr. ENT placed it a ceremonial little, tiny box to put under his pillow tonight for the TUBE FAIRY.  Nice.

--P needs a swallow study in a few weeks to see if there is something going on with his swallowing....just a few symptoms we want to check out.

--We capped Lily's trach to see if she is tolerating it.....she didn't.  Gray isn't a nice color on that cute little  face.  Jaw distraction is still on for March.

--My sweet toddler girl did get to see our favorite speech therapist in the end.  She ran in after we had seen the ENT.  Her assessment of Lily's sorely lacking verbal skills.....apraxia.  We had both sort of suspected this, but it is looking pretty likely that is what it is.  You might think, "Well, of course she is behind in speech, she has a trach."  But, apraxia is different.  Lily is anatomically capable, even with a trach, to talk.  For some reason, her neuro system just isn't allowing her to plan correctly all of the complex movements in talking.  I took this all in, and in my usual fashion, moved on to the next clinic on the list.  On the way home, I had to time to reflect, and decided apraxia stinks.  Lily is getting increasingly frustrated.....and we'll be spending a lot of our life after her jaw is repaired in speech therapy.   I grieved a little as we drove is not for wimps.

--Last stop....pre-op clinic.  Lily's fistula repair for her palate is next month.  Pre-op likes to see the kids unless the doc's nurse does the h&p which is what I totally missed when I was so late.  So, I dashed in just as they were closing the clinic.  With five kids and me running down the hall, pushing Lily in her three handle family credenza (double stroller), and I'm yelling, "OH NO.....they are closed!!!!", I am sure we were quite the sight.  They knew girl has quite the reputation around the surgery folks.  Her airway is troublesome and, as her ENT said, "She likes to misbehave."

--Finally, the blessing in being, gasp, 35 minutes late??  When I got bumped to the pre-op,  they asked me who I would like in anesthesia to put Lily to sleep.....what a great thing!!!  I have a choice?  I wouldn't have if we had seen the doc's nurse practitioner earlier in the day....the one I was really late for and missed.  God is good....I put in for my favorite one, she does a lot of cardiac kids and is amazingly good, they'll let me know in a few days if she can do Lily's case.

I mainly wrote this so I can look back several years from now and think, "Wow, we did that???"  Not really, at least in our own strength, but God sure carries us through it all!! (Just to be totally for real, and not like some "saintly mom of special needs kids"....God carries me kicking and screaming sometimes, I am His stubborn girl, the one who wants to be on time.......I'm glad He doesn't let me get my way all of the time!!!)



  1. O Diana - when I talked to you yesterday I had no idea of these events. Hugs to you all - and especially precious Lily - so frustrating for her.


  2. Dear Diana,

    Wow! Thanks for sharing your day with us. You and your children are such a blessing. We really miss seeing you here in ol' Indy. I don't know Lily well at all, but I suspect that she is alot like you! Happy Thanksgiving from our house to yours.