Monday, December 28, 2009

Update on Emeric...

Again I know some of you follow Emeric's caringbridge but some don't and I haven't written about how Emeric's health has been in a while. At least I don't remember doing so...???

Emeric has been doing well. He was sick the weekend before Christmas throwing up(we all were!) and then ended up with a pretty bad migraine the next day. He laid on the chair all day moaning and crying any time he moved. It lasted for about 12 hours and then he went to bed and woke up much better the next day. He still was unable to walk and even had a hard time crawling but throughout the day and the next day he was back to himself! I wish I had a good explanation the cycle of sickness = migraine = not walking. It's strange because he really wasn't that sick but illness always affects him in weird ways!

Seizure wise he has been doing very well! We haven't seen a seizure in about a month which is great because we lowered his meds and expected to see some. It's great if we can keep the meds lower! They won't continue to lower them even though we're not seeing seizures because his last EEG showed a lot of activity which means that if he were not on the meds he would likely be having a lot of seizures. They want to "clean up" the EEG, meaning they want the meds to make all of that activity go away too because with all that noise in the brain it's harder to develop normally.

And speaking of development... this is always a sore spot for me. It's a hard balance because on one hand he's not that behind and on the other hand he is. Make sense? I mean, there are always kids I can compare Emeric to that are much more delayed and that helps me stay positive and be thankful that he's still progressing and doing well! However, there's also the kids his age that we see frequently that remind me of how behind he still is, so I don't want to be a downer, I don't want to sound ungrateful or feel sorry for myself but it's hard sometimes. Hard to see all the kids his age singing in the Christmas program, hard to see all the kids memorizing verses and getting patches on their vests at Awana, hard to have little kids point out the fact that Emeric doesn't talk.

The not talking is probably the hardest thing developmentally for me. Emeric has learned a few new words but with that he loses the ones he had. He is still considered non-verbal. I can tell that he wants to talk but can't. I know this because I will ask him to say a word and he will try to think of a sign for it. He wants to show us that he can say it but, he can't. He will repeat some words but you typically have to work with him for a long time before it sticks and even then he tends not to use it in the right context. For example, I taught him to say "papa" because it seemed much easier than grandpa. So I will say now, "say papa" and he will and I'll clap and be all excited. But, then I can say, "Emeric, say Kylie" and he'll smile and say, "papa" because he knows it will get a good laugh. So he's never used papa in reference to grandpa, he just uses it if he wants to be cute or if we ask him to repeat it. This is the way it is with most of his language. He does have a few words he uses appropriately like "nani" which is his blanket and he says mom and dad.

It's been really hard to know how to approach the language stuff. Do we keep waiting and hoping he'll just start talking one day? Do we teach him sign language? Do we use a communication device? Our fear has always been, well if we teach him sign language what if he then never talks? Well, at this point what if he never talks AND we don't teach him sign language? Then he has no way of communicating. He's picked up some sign language but even that has been pretty hard for him to really grasp so it's been a slow process. He can now say please, help, thank you and more in sign language.

He was 3 in August. Everyone kept assuming(including us) that one day he'd just start talking. And sure that might still be true. But his language has not ever developed typically like most kids. It isn't like he's just delayed, his language has always been weird... Meaning a lot of the first sounds he was making weren't typical first sounds and he's not continually building his vocabulary which he should be. He loses words before he'll gain new ones. It's like his brain can only hold so much or process so much, I'm not sure. I wish someone had the answer!

So we've started using a communication device, we've started learning more sign language, and for now I keep holding out hope that Emeric will eventually talk, it's just not going to be when we want it to be! The speech language pathologist we see has said she does think Emeric will talk but because he has a word finding disorder(you know when you want to say something and just can't think of what it is?) that he will likely always have some trouble with that. It's just hard to say how much and not dwelling on that is going to be my biggest obstacle to overcome!

I'll have to get a video for you all to watch, Emeric is quite the clown and he knows it! He enjoys making people laugh and likes to act goofy for any audience! :)

Kudos to you if you made it through this ridiculously long update!


ben and erin said...

thanks for the update! YEA for no seizures with the lowered medication!! i'm praying that it continues that way!

i hope the communication device works. now--what is that exactly?!
i'm sure it is really frustrating for you guys AND emeric not being able to communicate what exactly he wants/needs.

i'm looking forward to the video!

Jess(ica) said...

Hey! Yeah, it's great he has been seizure free for a while!

The communication thing must be tough. From all the options you listed that you are considering, it seems that teaching him both sign and verbal language would be best b/c then either way he ends up communicating he wont be behind.

I would love to see a video of him being goofy! =)

A day in the Life... said...

Thanks for the update on Emeric :)

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