A long day of clinics

As I’ve mentioned before, long clinic-filled days are nothing new to us. Nothing new, no, but that shouldn’t suggest that we enjoy them.

Yesterday morning was unenjoyable, but it was not pointless; far from it. It was a great opportunity to catch up with both doctors who’ve seen Namine before (but haven’t seen her recently) and doctors whom we’ve never yet seen. And all things considered, we came away with only good news. Plus one slightly crabby child, but I think her level of crabbiness was in direct proportion to her proximity to the clinic building.

The first appointment of the day was with the speech pathologist at 8:00 in the morning. I’m pretty sure it was also the longest clinic visit, but let’s face it – it was a long morning, regardless. But I digress. Most of the visit consisted of the speech pathologist having Namine repeat words. Before starting with Namine, though, she asked us how much of what we say we think Namine understands. I said – and Jessica agrees with me – that it’s not a question of comprehension, but obedience. She understands nearly everything. Anyway, Namine got to play with several different toys – rather, she was tested in several different ways, under the pretense of playing. There was a Little People barn with animals, and Namine named the animals and imitated their noises.

An interesting side note: Namine makes no connection between the word “oink” and the sound that pigs make. We’ve always made snorting noises when imitating a pig, so Namine does the same. I noticed this the other day, as well – in playing with one of her talking toys, it asked, “What sound does a pig make?” Namine snorted in response. Then it said, “Oink!” She got a puzzled look on her face, like What? That sounds nothing like a pig!

After an hour and a half, the speech pathologist was content with the results she’s gotten from Namine. She explained to us that while Namine does have quite a bit of nasal whatever (give me a break, I don’t remember all the six-syllable words she used) when she talks, but she’s doing very well for as little time as she’s had to learn to talk (if you remember, she got rid of the trach last September but her talking has only really picked up in the last week or two). She can make quite a few consonants, and her progress is encouraging. She also agrees with us that further palate surgery is not – at least immediately – the way to go. Namine needs time, she said, and she wants to see her again in six months. She’ll review Namine’s progress then, and decide which direction to go from there.

While we were talking to the speech pathologist, Namine was playing with a toy boat. On it were four chimneys, like a steam boat. On the tip of each was a colored ring: red, green, blue, and purple. Each top of each chimney was a colored ball that matched the colored ring. This is the same kind of color matching toy that Namine’s therapist uses. In therapy, Namine often goofs off and matches colors incorrectly, leading her therapist to conclude that a) Namine does not know her colors and b) we don’t work with Namine on her colors. Well, as we’re talking to the speech pathologist, Namine was playing with the boat. She removed all the balls, mixing them up, rolling them around. When we were done, I told Namine to put the balls back on the boat. And Namine put the colored balls on each corresponding chimney. (Now how do we get her to behave in therapy? Like I said, it’s a question of obedience, not comprehension.)

Next on the docket was a hearing test. Before the audiologist (I’m sorry, but that still sounds like a made-up word to me) began the actual test, though, she wanted to look inside Namine’s ears. She used what she called an ear camera. If you know how much Namine hates things being put in her ears, then you know how loud she screamed. (After being held down to have her ears cleaned, though, I wouldn’t blame her.)

When that was done, though, the audiologist led me, carrying Namine, into a sound-proof room. In it there were two speakers, one on the right and one on the left. I sat down with Namine in my lap, both of us facing the front. All Namine had to do was turn her head one way or another, toward whichever speaker emitted noise. The audiologist alternated the speakers, and Namine caught on pretty quickly. After the fifth or so noise, she figured that the other one was going to go off, so she looked at it in advance. The audiologist didn’t like that, and she told me to get Namine to look straight. (I did my best, but you know, Namine is Namine.)

All in all the audiologist was pretty happy with how Namine did. She didn’t seem to pick up on some of the lower level noises, but those were all near the end, when she was already getting pretty sick of just sitting there. So that might be a false positive, which she noted in her paperwork.

We met with ENT (ear/nose/throat) next, and that was nothing spectacular. They checked out Namine’s ears, felt the glands in her neck, and agreed with the speech pathologist that waiting to see Namine’s improvement by herself was the best path to take.

Next up was having Namine’s pictures taken. The point is to document her growth, and to be able to have a visual of the front and sides of her face. Namine was already pretty sick of strange people by this point, so she wanted nothing to do with it. She actually worked herself up so much that she threw up a little, but we were able to calm her down a little after that.

We finished up with the pictures at about 11:00. The next appointment was supposed to be with Dr. Denny, Namine’s plastic surgeon, but then we were told that he wouldn’t arrive until noon, at the very earliest. Joy.

We were called back to see the orthodontist at 12:20 or so, seeing as Dr. Denny still wasn’t in. Tired and crabby, Namine cried and told me “no” quite a bit until I told her that he would brush her teeth. This wasn’t quite true – he just wanted to check her teeth – but Namine loves brushing her teeth, so it got her to calm down a bit. Namine doesn’t have any extra or missing teeth, nor does she have any cavities. And her four year molars are coming in. Really, nothing but a “keep up the good work” from the orthodontist.

After we finished with the orthodontist, we only had to wait a short while longer to see Dr. Denny and his cleft palate team. (They’re part of the larger craniofacial department of Children’s Hospital.) By this point, nearly all of our questions had been answered. We already knew that we’d be waiting at least another six months to give Namine’s speech a chance to improve. Dr. Denny himself said, “It’s not a race. There’s no rush. It’s her own progress, at her own pace.” I couldn’t have said it better myself.

He did explain something that I hadn’t quite understood, though. He told us that the palate surgery wouldn’t give Namine the ability to speak or pronounce that she didn’t already have; it would merely improve the quality of her speech, allowing her to close off her nasal cavity completely, something that she can’t do yet. But time, more than anything else, will show us how Namine learns to speak. She has already learned so much, and is speaking more every day.

One response

  1. Dadgineer aka Steve Avatar
    Dadgineer aka Steve

    First off, the pics are so cute.
    Secondly, I don’t see the goofing off as a bad thing. She is using her imagination, which is huge on so many levels. Docs/therapists focus too much sometimes on doing what is correct. “Match the colors”, ya ok, but how about, “Play with the colors and pretend.” that is harder.

    All I can say is look out world, Namine is coming.

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