Tuesday, March 17, 2015

When my heart is overwhelmed

I know it's been a while.  I've been trying to process everything that's been going on lately, and while I'm still not there, I think I can think clearly enough to write some of it down.

March 5th we were back at Children's Hospital to see C, the audiologist, and also meet our new ENT.  Let's call her "J".  C did another hearing test.  This time Holland wasn't quite as cooperative.  She had a slight cold, and apparently that can make it even less fun.  So, they did the best they could which resulted in a confirmation of the previous results.  Holland is definitely severely hard of hearing in her left ear, and profound in the right.  We were then discharged from C's caseload.  That means we will just be seeing H from now on.

J was really nice, just explaining to me the different types of tests that we need to do to find out more about Holland's hearing loss.  She will need an eye exam, electrocardiogram, MRI, possibly a CT further down the road, and we have the option of doing genetic testing to see if there is anything that we could have passed on to her.  This all seems like a lot for a little girl.  It makes me sick to my stomach, just thinking about it all.  We go back to see J again in June.

March 9th we were back in the city, this time at a place called Central Speech, which is the place where they do auditory/verbal therapy.  They work mostly with cochlear implant users.  In fact, if Holland does get an implant in the future, this will be the only option for therapy.

Our meeting was just for information purposes, to help us decide if we wanted to go there for therapy.  They talked about implants and how they work, as well as what type of therapy they do there.  One red flag to me is the fact that they don't allow the use of sign language with this form of therapy.  The staff there don't even know any sign language.  They did explain that this is a very critical time for Holland to learn to listen and speak, which makes sense, but I would hate for her to be left with no language at all when in situations where either her aids or implants don't work for some reason, or there is too much background noise to hear anything.

We did decide to go this route regardless of their view on sign language, simply because we may end up going the route of a cochlear implant.  We will be traveling to the city once a week for therapy. We figured that starting therapy there would be more beneficial than possibly having to switch partway through.

March 10th we went to see H for Holland's hearing aids.  He fit them to her ears and taught us how to put them in and turn them on, etc.  Holland did fairly well.  She was fussy, but it was also nap time.  We did notice a reaction when they got turned on.  Her eyes lit up and she seemed to notice the sounds around her.  I would like to say that she loves them and is hearing things.  However, she pulls them out constantly and I don't know what she hears.  It's been a full week now, and she seems to be getting worse instead of better at keeping her hearing aids in.

1 comment:

Rose said...

May God grant you wisdom as you look to make the best decisions for Holland. (I am a Mom of a preemie and we have also had many, many medical appts. over the past 6 years, including genetic testing.) It can be tiring and draining but has been so worth it for our son. And, I acknowledge It is difficult when milestones are not reached when expected.