Monday, January 24, 2011

ENT Update

Friday ended up being a pretty relaxing day, in comparison, of course.

I took Cooper to preschool and then went to Murphy's school for our follow-up Child Study Meeting from October.

Jennifer worked that day, and took Harlie to gymnastics for me.  For some reason, her coaches were not teaching her/letting her do a forward roll.  Every time the kids did forward rolls, they had Harlie do a hot dog roll.  So, Jennifer went to them and told them that Harlie can do a forward roll.  Meaning that they should be teaching her how to do one.  They said, "oh, I didn't realize that".  What?  Ugh.  I mean, if they try to teach her, and she can't do it because of her cervical spine issues, or trach (which I really don't think would be the case) then that's one thing - but to just assume that she can't, well that stinks.

After gymnastics, Jennifer took Harlie to school.  She had to leave early to go to her ENT appointment, which isn't that far from the school.  Luckily Jennifer took her to the appointment so I could stay home with Cooper, get Murphy and take them to Murphy's doctor's appointment.

And since I got to stay home - alone - for a little while, I got to clean the house.  Yay!

ENT Appointment

A few months ago, Harlie's hearing aid was giving us feedback (you know, making that high-pitched sound) when in her ear.  Not good, of course.  So, I made an appointment to see a local ENT (her ENT is in DC) for an ear check.  The ENT said that her canal was impacted with ear wax.  So, we had to put drops in her ear for more than a week, then we took her back so the doc could remove the wax.  That was torture and it took three of us to hold her down.  Ugh.

At the next follow-up appointment, like six weeks later, she had fluid behind her ear drum.  And her ear tube had come out (it was her THIRD).  Ugh.  So, I was to give her Nasonex sprays up her nose for six weeks and come back.  Well, that's the appointment I forgot to make.  So, more than six weeks later, she finally had her ENT appointment on Friday.

And her canal is impacted with ear wax.  Again.  This doc was filling in for the other doc, who had her baby and is on maternity leave.  This doc said he would not attempt to extract the wax in the office.  He said it would be too painful for her.  He said she needs the OR.  Which I can see, considering how horrible it went last time.  And he said that her hearing (even with the hearing aid) is drastically reduced with that blockage.

The hearing aid being in her ear during all her waking hours prevents the wax from getting out.  And evidently, when you bathe a child and water gets in their ears, it helps to remove the wax.  Well, Harlie never gets water in her ears since water is never dumped on her head.  So, he said that we can get some ear wax dissolving drops to put in her ear each night.  While I'm grateful that there is such a product - I can't stand having to add another item to her nightly check list!!!!

Since it has been more than a year since she has seen her DC ENT, I would rather take her to see him for her "ear work" than having her go under anesthesia here in Richmond.  So, after I spoke to the local ENT on the phone about all this - I immediately e-mailed her DC ENT.  I asked him if we could skip the required clinic visit and go on ahead and schedule OR time for him to do a full "check-up" (remove the ear wax, put in another ear tube if necessary, a bronch, etc.) since we know that's our destination anyway.  She hasn't had a bronch since her last jaw reconstruction.  So, I would love to see how he thinks her airway is doing.  I can't help but think that her airway has improved (despite the fact that the graft on the right side died and had to be removed).

Well, less than 10 minutes later, he e-mailed back and said he agreed that a clinic visit wouldn't be necessary, and that he will have his scheduler call me to get it scheduled.  Woohoo!  I LOVE her ENT.  We are so lucky that he was the one working when she was born!

Hopefully we can get her in soon, since she's probably not hearing squat right now.  It is so amazing how she can trick us into thinking that she can hear.  It is only really noticeable when we tell her/ask her to do something that isn't part of a routine or when she isn't looking at us when we're talking to her.

Murphy's doctor's appointment went fine.  He is certainly growing.  He is in the 50th percentile for weight and 75th for height.  I will update you more on him soon.

More soon!!!
~Christy

1 comment:

Susan said...

It's just not fair. Poor girl goes through too much! Hugs to Harlie.