Tuesday, December 22, 2009

First Cranial Facial Team Visit and others stuff

I thought that we'd be winding down on "Firsts" for a while, but I was wrong.

On the 18th, JJ experienced his First Research/Teaching Hospital Experience when we visited the Cranial Facial Team at Childrens. Last week's dentist visit was a cinch in comparison.

First we met with the Speech Pathologist. She said a lot of things which already lived through or noticed ourselves. She had him talk in Chinese (along with the Chinese interpreter) and then in English sounds. She noted that the lack of clarity between the interpreter and JJ was apparent. She also noted that he had lots of glottal sounds(substituting the back of the throat clicking for hard sounds like the K, T, SH, G, etc) and lots of hypernasality which means he sounded like he was talking through his nose - my definition of hypernasality, not hers, but you definitely know it when you hear it (like blowing through his nose instead of blocking the nasal passage like when we say the word "see", for example. Say it while you are blowing through your nose and you know what it sounds like. Yah. I know. Not pretty. ) And some facial grimacing with certain sounds.

Basically these are common "short cuts" that cleft kids learn to take at a young age because of the palate and lip issues. She said these were more behavioral than physical impairments that he learned early on. He can and should be able to correct them but he will have to work hard to break these habits. Oh great. You mean you can't just FIX it FOR HIM??? She also noted a short palate. It was bad enough to need correction but not bad enough that he couldn't start speech therapy before the palate was fixed. And it pointed to his bad speech habits as opposed to a physical accommodation.

She also did not think tongue exercises would do much. Since he is 8. The way to work on speech is to ... get this ... SPEAK! Gee, who knew. :o/ I liked that advice.

She wasn't sure about speech therapy since he can't speak or understand English. The issue is telling him how to place his tongue a certain way if he can't understand. So there again, the whole language issue rears it's ugly head. ARG!!! She is going to try to get info on a bilingual speech therapist she knows of. Either way, we would need to do a speech study. And we would wait to see what the doctors said. But we need to wait at least 3 months before starting any kind of speech therapy due to his language issues. In the meantime, time is just ticking away for Impatient Mama.

After that we went into a room to wait. Not long. And someone came in to warn us about what we would see when we walked in. Well, I knew exactly what was going to happen but JJ didn't know what was about to hit him.

They opened the door to another room across the hall. First thing I saw were 3 chairs in a row. We filed in and sat. In front of us was a long table with 5 or 6 people who I assumed were primary doctors on the Cranial Facial Team. And behind them were about 20 other doctors/students lining the wall, sitting on the counter that ran the length of that wall. JJ looked up with wide eyes, smiled, waved and slowly sat down. He realized it was all for him. He was very well behaved.

Then the discussions ensued. The lead surgeon could be pointed out right away. An older gentleman who commanded authority. And the Dental surgeon was the second person you noticed.

The Lead surgeon looked first. Asked me why China didn't take "that skin thing off his ears?" I said, "uhh because its China?" Of course I had been told that the Chinese think it's for good luck but I think that's a crock. Just an excuse. I can't imagine walking around with extra skin that looks like it's a tiny budding ear would bring you any kind of societal good luck. Anyway, it could also signal kidney issues. Just what I needed to hear...

Anyway, the lead surgeonlooked for about 30 seconds - ears, nose, mouth. The oral surgeon followed. Another minute. "Yup yup ... I see ..hmmm... Short palate..." And then sat down.

Then another doctor and the hoards of Doctors Lining The Walls came up. That took a little longer. Good grief. Again, ears, nose, throat... Explanations, people taking turns looking. Needless to say, this took a little longer. But JJ loves being the center of attention so he smiled the whole time, cooperated willingly, and was happy to accommodate. Unbelievable.

The oral surgeon also looked at the dental xrays we brought with us from two days prior. They all knew JJ's dentist, JJ's dentist, and said she was very good. Phew. He said they would need more xrays, though. Fine. Figures.

So after much discussion, it was decided to do two things in parallel, which I have separated into Soft Tissue and Hard Tissue (bone).

Soft Tissue would be faster - if you can call a year or more "fast.". He needs to get the Speech study done. Then he will get the P-flap surgery for his palate issues. While in there, Dr. Mulliken will also "fix" his nose, and take "those ear things off". I think there may be a deviated septum issue but hopefully he will even out the crooked nostrils as well. And he did mention that China did a better job than he thought on the lip but I hope he will get in there fix that too.

They also noted that JJ has a syndrome called hemifacial microsomia where the lower half of one side of the face is smaller than the other and doesn't grow normally. This is more than the usual "my right foot is a half size bigger than my left" issue. This is a syndrome with a real name that causes real issues if it is more than just "slight." they thought that JJ's was slight - maybe 10% or less. The lead surgeon said he would be fixing that as well when he goes in to do the bone graft.

In the meantime, we are scheduled for an Orthodontic Records appointment. More xrays. Great. I hope they don't make him choke again like the hygenist did. Afterwards he will get some type of orthodontics that will stretch out his palate because it is small. After that will come the bone graft surgery. That could be about 18 months away.

Afterwards, we saw the audiologist. And sure enough, he failed the test just like he did at school. He right ear is worse than his left and it's at certain pitches and sound levels. She said it was "a little odd." She noted the ear wax. Anyway, we will need to make an appointment with the ENT doctor and most likely they will have to put ear tubes in. This could also be a reason why he produces sounds differently if it is impacting his ability to hear, especially the fine gradiants in sounds like the B and the P. Of course, air coming through your nose and leaking all over the place doesn't help either. But they will take care of the Big Ball O' Wax and check for fluid in his ears before putting the tubes in.

All in all, we are talking about a 1 year to 18 month process. By that time, he will be older than 10 years old. Hopefully, his speech will have been improved somewhat with Speech Therapy and better hearing. And he doesn't need other therapy because he's been poked and prodded for the entire better part of his life.

Everyone agreed he seemed bright. Which will help him mentally process and rationalize what is going on. He has been through the drill so many times that I know he is used to a lot of the process but it's going to get even more intense and more painful.

We do not tell him much of anything until a day or two before the doctor's appointment.

Well, JJ has a long road ahead of him. But he is very cheerful and very happy and I think that will serve him well. I hope he looks back on all this and understands when he is older.

On another front, Joseph and I had our first Parent Teacher Conference. It wasn't too bad but I could tell that JJ was really worried. He stuck by us the whole time we were talking to his teacher. When I looked up at him, he was looking intensely at my face and he was NOT smiling. Well, that was a First for JJ. LOL. Now he knows that Mama and Baba have free access to his teacher. She said that his behavior has been better since we caught him the Big Fib about his friend not being at school. Anyway, she also said he was more attentive. And we told her that she should be giving him math and that he shouldn't be taking Spanish!!! She agreed.

And I also had to tell him that Santa Claus is make believe.

Ok. Let that one sink in.

And I told him not to tell the kids at school.

I'm just saying this because there are some people who will unknowing talk on and on about Santa and he will wonder what's going on....he is either gonna think that Santa only shows up for Non-asian americans or someone is not telling the truth or some people are wrong or whatever.

So. He says to me the other day that Santa is going to give him stuff. Uhhhh..... Who says? His friends said. Oh. Why? Well, he doesn't know why. Oh, really.

Well... Let's see. He is 8 1/2. Coming on the heels of chastisement about fibbing (LYING), I could LIE to him about Santa, have him come back in 6 months to a year and ask me why I LIED to him, or tell him the truth. So I chose to tell him that Santa is make believe. When it dawned on him what I was saying, he seemed disappointed. Not sure if it was because he thought no one was going to give him anything or what. Why would he care if he doesn't event know about Christmas much less Santa? I know that he had told his Nanny that he only had heard about Christmas but didn't ever experience or know anything about it.

Soooo...now I am thinking of telling him that Santa only comes alive once a year by magic. I think that will lead into other discussions later about what that means. The spirit of Christmas, Karma, Giving all year, etc. It's something that I can wholeheartedly explain and believe in from a symbolic perspective.

Joseph was a bit chagrined by the whole turn of events but I know he KIND OF understood.

Ok. That's it. I'm sure I'll think up more ways to ruin JJ's holidays in the coming week. LOLOL. I know. Mean Mama.

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