Saturday, May 30, 2009

Do you hear what I hear?

Big day! Lily got her hearing aids. I have already noticed a difference, now it will be a matter of her getting used to how they feel. She wore them for an hour yesterday which required bribery in the form of Dr. Pepper and ice cream. They are amazing lil apparati.

We haven't seen Miss Julie for weeks, so she met up with us right before Lily's appointment. Lily had just fallen outside on the sidewalk and was still carrying on about how her legs weren't working when we spotted Julie. She mentioned a boy who would always spike fevers before he had to have treatment and how Lily seemed to always fall on the way into the hospital. Lily tends to fall everywhere- but the problem is moreso the curb that Lily feels compelled to "balance" on. Needless to say- her balance isn't so hot.

It is also interesting to see the interaction between a child life specialist and other fields that she doesn't usually get called in to help with. Julie is by far one of the most overtasked individuals in the hospital. They finally hired another child life specialist because it is impossible for one person to be everywhere all the time. The peds ward is usually busy and they are always calling on her in clinic, in radiology and the ER. When Lily's audiologist arrives, Julie is in the midst of talking to Lily about her new aids and tries to get Miss Amy involved in the prep. Miss Amy kinda laughs- as she does every session, of all the things Lily goes through- these appointments are minimally invasive and not even uncomfortable. So Julie continues on, and this is one of the reasons she is so good at what she does. It is important to her that kids are prepared and given tools to deal with any situation in the hospital- even if it seems silly to grownups or practitioners.

So Julie gives us big hugs and is off to some appointment we have probably made her late for, and we go into the hearing aid fitting. Lily is on the emotional upswing and now her legs are starting to work and she is talking a mile a minute and asking Miss Amy every question under the sun about this part and that part and what is that lady doing, what is that room for, where is the bathroom....Miss Amy fits the plastic earmold to Lily's ear and files down any parts that might rub. The earmold part is clear with pink and purple glitter inside it. It connects to the hearing aid by a clear tube- the hearing aid itself is pink. When she gets older, she may want it to blend- but for learning purposes right now- it's probably good for it to be visible. While Amy starts to program the aids- Lily plays Silly Lily Bug with her molds. At this point she has regained full function of her legs and wants to check in on what Miss Amy is doing.

The audiology clinic is a series of sound proof rooms, each one connected by a 1 way mirror to the office of the audiologist. Lily hops out of the stroller and gallops to Miss Amy's office. As she hops in- she declares- I farted! And giggles like a mental patient. I remember the days when this would mortify me- now I laugh and offer the socially acceptable apologies. Man what did I feed the child- Miss Amy fortunately has a mini room freshener- "just for these occasions" . Yep that's what working with kids teaches you- you need patience, hand sanitizer and air freshener.

We put Lily's aids in, she hooks her up to the computer and it starts programming. We will wait a couple of weeks for a hearing test, they are set low and that will give her some time to get used to them. We go over the details, operation. I ask all the questions I can think of- think that it seems simple enough, what could possibly go wrong? We leave and by the time we get to the car she is demanding to take them out. She is holding a drippy ice cream cone that was reward for her aggreeing to wear them all the way home. The Dr. Pepper, which was my reward for having to sit in traffic on the way home- now becomes her incentive to continue wearing them. I see how this isn't the best parenting technique and the inconsistency of it- but frankly I'd rather be thirsty than listen to whining the whole way home. The problem was that as she was hopping into the car- she realized that the aids are in her ears. When she rides in the car- she likes to suck her thumb and shove her nee nee in her ear. This presents a problem. In the future we may have to go to 1 aid ops in the car- but I would like to set a precedent here. Precedents are very important when dealing with Lily. Hence the bribery problem.

I had loosened the Dr. Pepper lid for her. Apparently as she was getting into the car- she shook it, dropped it and probably agitated it in many ways. As we are getting to the highway, she has tired of the ice cream cone- which I fortunately had the foresight to leave a baggie in the seat next to Lily, for her to dispose of. She opens- well starts to open the Dr. Pepper- see you all see it coming- I am in the front seat- I see it coming- and there it is- Old Pepperful. I am chanting -put the lid back on- put it back on! She gets it closed and is dripping. She starts howling and then realizes that if she licks herself- it tastes good. That buys me enough time to get a successful merge onto the highway. She then realizes it is wet and cold and starts wiggling out of her dress- all the while trying to suck on the dress. Ick. She tries again 3 times before she can successfully open the beverage. I listen to Lily on auto repeat for 45 minutes- I need to take a bath. I am sticky. I have to take these out(aids) so I can have a bath. I need to take a bath. I am sticky. OK rain Lily- GOT IT.

We stop to pick up dinner and the aids are out of her ears before I even get my seatbelt off. They are making this horrible screeching sound- which I was told they would not do. Lovely. I put them in the case and will deal with it later. Apparently that made them happy- they stopped screaming.

So this morning, the plan was to keep the tv turned down to acceptable decibels for the rest of us, and when she asked to turn it up- present the hearing aids as the only option. 2 tries later- no hearing aids on and she is resorting to tormenting everyone. Just keep swimming. Just keep swimming. I quasi put them in my ear to see if they are working-I think the noise is the high frequency amplification for her- but it's annoying. I realize how little I really understand about this whole process. Ugh. I am going to try turning the volume down - but the problem is that if the volume is too low- she can't hear and they are more like ear plugs so she wants them out. I don't think it's too high because Amy said she purposely undercut it so that it wouldn't be too loud while she was getting used to them. I know Phil is lamenting not being here to play with the new electronic gadgets- and I really am wishing he was here- because all this trial and error and figuring out stuff would actually be fun for him.

It was fun to watch her run around the house when she first put them in this morning and I could tell she was listening to things like the scuffling of her feet and things. But the feeling of them in her ears is going to take some getting used to. We may have to put them in and go for an outing so she can be distracted by new sounds. My goal is to have her wear them for at least an hour and a half today. It may be in smaller chunks, but that's the goal.

They also have a remote. AND the remote uses the same charger as my phone- BONUS. The remote looks like a ghetto ipod nano. So I was playing with it and Lily asks me " Can you put songs on now?" and points to the remote then her ears. I tuned the tv to music on demand- but she only lasted 1 song before she pulled them out. Logged: 5 minutes. 85 more to go.

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)