Saturday, July 18, 2009

Heading Out

Lil'Man has appointments both Monday and Tuesday in Chicago. We are going to stay overnight, but we are driving outside the city to Monet (sp?), IL to stay at the hotel. His appointment on Monday is early (yeah!) @ 9 a.m. He sees Dr. Suskind, the ENT. We just love her but the appointments take soooo long. Hopefully, it will not take too long since it is so early in the day.

I expect she will have to clean his ears out and pull out the one tube that we know is in the ear canal. Then he will have hearing tests, and then go back in to see her again. I am going to talk to her about Speech Therapy, since we are doing the others up there, and getting a communication device. We HOPE it will be covered by insurance, but that is always a toss-up. We like the Go-Talk 20 to start out with. If this is a device that is only covered once every 5 or 6 years, we will probably have to go with something that can expand more - something like this which is more computer type. There are hundreds out there - each more confusing than the next. We pretty much expect that she will want to put in a new set of tubes. He also scratched his nose and now has some sort of infection going on. We will be asking what to do about that.

I feel like I have to address something here. I have already had a few comment from people when talking about this. We are NOT giving up on Lil' Man talking. However, the longer he doesn't, the harder it is going to be to get him to speak for it to be intelligible. We are still working on sign language. We have to remember that he has had significant brain damage, just at the part of your brain that deals with speech. He may be having raging conversations in his head, but not be able to get anything out. If those connections aren't there, it doesn't matter whether it is sign language or spoken word - he may not progress. The one thing with the communication device, especially this one, is that is is simple enough not to overwhelm him AND since he loves all toys with buttons, we think he would like this too. We HOPE that it will get him over that gap where he can recognize an object/action and push a button and actually GET WHAT HE WANTS! Can you imagine how empowering that will be? I would LOVE to know what is going on in that little brain of his, but until we figure a way to allow him to communicate fully with us it is never going to happen. Ok, now back to the original train of thought. LOL!

Depending on what time we get out of this appointment, we plan on going to either the Lincoln Park Zoo or the Chicago History Museum. It will depend on the weather, and how Lil' Man is feeling. I know Sr. REALLY wants to go to the History Museum. He is into the World's Fair and just the general history of Chicago. They also have an Abe Lincoln display that is only there until mid-August. Mondays are free at the Chicago History Museum and Lincoln Park Zoo is always free. We like free!!!!! :)

Tuesday is the appointment at LaRabida with the Dr. Thornton. She is the Medical Director for Peds and Adolescent Rehab, Rehabilitation for Kids Rehab. We are not sure what they are going to do - if it will be a full-blown PT/OT assessment, or just get the ball rolling. I am excited about this.We really NEED to get some things going on this front. Not looking forward to the drive, but if that is what it takes....... This doctor also works closely with the Orthopedist that Lil' Man sees. I hope that this eliminates a few appointments. Maybe they can tag-team over at LaRabida.

We can also schedule his wheelchair to be re-fitted and adjusted. I hate not using it - it was soooo expensive, but that thing is just so dog gone HEAVY! It takes two of us to lift it in and out of the van. If Dad is with me, he can't lift - so..... I will also talk to them about getting a script for those fold-up ramps to put the chair in the van. The worst they can do is say, "No" right?

Please e-mail me if you are having trouble viewing anything on our site. There has been some trouble with Blogger, and we are trying to get it resolved.

Have a great weekend!

Steph

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1 Comments:

Blogger Beth said...

I'm just home from a trip, and you're heading out!

I hope Chicago is nice to all of you--from museums to the doctor's office!

July 19, 2009 at 8:42 PM  

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