February 26th, 2010

We are home. It's always such a relief to be home. The trip to MI really wears us out. Of course, we were well equipped for the long drive. There was no shortage of sugar.....

Kinnick and Carver travel so good. You hardly hear a peep out of them. Carver brought his favorite chew toy and wouldn't part with it unless it fell from his hand.

Kinnick looked at her books over and over again. Don't tell her that her book is upside down. She reads with her hands and has no idea the book is upside down.

The drive always seems to cause stomach problems. Kinnick's stomach was out of control. On the way to MI, we stopped to get lunch and I unplugged her G-tube - food poured out everywhere! We had to strip her down in the Subway parking lot and change her clothes. Her breakfast from 3 hours earlier still hadn't left her stomach and the added lunch just compounded the problem. The next stop was to Walgreens for suppositories. We finally got things moving after about 3 suppositories, but until things were moving, Kinnick was not a happy girl. Carver received 1 suppository and proceeded to dump enough for an army. I'm not sure where he had all of it stored.

Kinnick ended up having surgery in both eyes for her Glaucoma. The pressure was 37 in both eyes. They did a laser surgery and some freezing in a few spots where folds were in the way - making it impossible to use the laser. We were told that this typically brings the pressure down into the 20's for a couple of years before you start seeing problems again. She should recover pretty quickly from the surgery, but does have quite a bit of swelling.

Carver didn't need any surgery. They checked his eye for infection and didn't see any infection. His eye is still irritated from the last surgery. The doctor gave him some gel to put in his eye at bedtime. Hopefully the gel will do the trick. We will return to MI in 6 months.

February 17th, 2010

It's been an exhausting week. Kinnick and Carver had their EI evaluations done in a classroom setting on Monday and Tuesday. While I have had some concerns, the school has responded very quickly to those concerns. I still have one lingering concern. Kinnick and Carver are still considered medically fragile and the thought of hospitalization due to catching something in the school that goes unnoticed is just overwhelming me with fear. Initially, there was talk about my nurses attending school with K&C. That made me feel a little better about sending them because I trust my nurses who have learned to act very quickly to early warning signs of trouble. Now, the school is saying that may not be possible. They are suggesting that one of their nurses attend school with K&C. I don't want to say that their nurses aren't competent, but they certainly don't "know" K&C and it would be difficult for them to "know" K&C's early warning signs of trouble in 6 short weeks (the amount of time that K&C would attend school this school year). I'm currently pleading with the school to allow my nurses to attend with K&C. I'm afraid that if they say no, we will be forced to get home bound services. Not that home bound services are bad, I would just prefer getting the services in the school. We've already met all of the therapists and are very impressed with all of them. I'm not sure who we would have if we go with home bound services.

Therapists from the school have come to evaluate Kinnick and Carver over the past few weeks in the home environment. A few more were here today and a few more will be here tomorrow.

Carver continues to have fluid behind his eardrum (right ear). The ENT will look at it again in 2 weeks. If the fluid is still present, he wants to schedule surgery to have tubes put in Carver's ears to drain the fluid. When do we get a break?

We hit the road first thing Monday morning for the long drive to MI for more eye surgery. Yippie! Gotta love heading North in the Winter.

I'll leave you with a few cute pictures of the kids....

Carver dreaming after a long day of school. He was just exhausted.

I didn't realize how long Kinnick's hair had gotten until I put pony tails in her hair the other day. Wow, her hair grows like a weed!

Websites that can be adapted for single switch use

I received the following websites from a group that I'm a member of - a blind/deaf group. These websites can be adapted for single switch use. There are also some good beginning computer programs.

1.) Papunet games:

www.papunet.net/games

2.) Jackson Pollock:

www.jacksonpollock.org

3.) BBC-Cbeebies Grownups - Cbeebies 'Switch' games:

www.bbc.co.uk/cbeebies/grownups/about/specialneeds/physical_cbeebies.shtml

4.) Adapted Books and Access Training Activities:

www.learningtools.us/Activities/adapted_books.htm

5.) Priory Woods:

www.priorywoods.middlesbrough.sch.uk/resources/programres.htm

6.) Free Switch software and Cause/effect setups:

www.northerngrid.org/ngflwebsite/sen/intro.htm

7.) Rj's Free Games:

www.rjcooper.com/rj%27s-free-games/index.html

8.) Enabling technology and ideas:

www.oneswitch.org.uk

Enjoy!

February 6th, 2010

Kinnick LOVES music (silly songs). She drives us crazy begging us to start the CD player. So, nurse Marci put a piece of tape on the [start] button, and showed Kinnick how to find the button with tape. Now, we have music ALL day long. Kinnick just climbs up the cart and presses the button.

We finally got a "Flip". This is a mini camcorder. It records 2 hours of video and the videos can be uploaded to the computer. So, as soon as I figure it out, I'll post some live action of Kinnick and Carver. I can hardly wait. I get so excited over these little purchases. Money has been pretty tight since Bob got laid off last year and started a new job (doing the same thing), but making significantly less then before. Gotta love the economy. Anyway, Bob got some money from Subura last month for having one of the top sales numbers for the month. So, that helped pay for the "Flip" and a TV mount in the basement. We've had a flat screen TV in our storage room for over a year. We bought it to go in our bar. We just never had the money for a mount. The rest of the money went into our vacation pot. We finally got enough money saved for our vacation next month. I sell all of our baby stuff on craigslist after the kids outgrow them. For example, we are now selling Kinnick and Carver's Peg Perego Duette SW twin stroller. We paid over $800 for it and I'm selling it for $400. It still looks brand new. So, if you know anyone looking for one, let them know I have one for sale.

January 4th, 2010

Today we had a visit from the TOD's (Teachers of the Deaf) that will be working with Carver when he starts pre-school. They wanted to do a "functional" hearing test. They presented several different sounds to Carver and looked for a response. It was noted that Carver needs to be reminded to "listen" when you're working with him. Because Carver doesn't see, he now hears (thanks to his CI's) lots of sounds around him all of the time. A lot of the sounds have no meaning to Carver, yet. Carver has a tendency to get wrapped up in what he is doing - like playing with a toy, his hands, or just trying to get comfortable to take a nap. He easily tunes out a lot of the surrounding sounds. So, when someone new wants to work with him, they can't just shake a toy and expect him to respond to the noise. It's not necessarily that he can't hear it, it's that he has "tuned" it out. So, we have found that if we first say, "Carver, listen", then present a sound, we get a response to the sound because he knows that he is supposed to be listening for something - someone is playing or working directly with him. I'm really excited about the TOD's genuine interest in helping Carver learn. Based on the testing, it sounds like they are going to make a recommendation to spend a great deal of time with Carver in the classroom on a daily basis - especially in the beginning. They want to figure out what works for him. Carver needs to be able to communicate in order to progress. This will be a huge focus - especially in the beginning. They had a lot of great ideas. I'm excited to see them in action.

February 3rd, 2010

My little monkey! Now Kinnick thinks she can stand while swinging. This kid has no fear.

We put Carver in the Sound Booth again today for some testing. The testing is pretty subjective. He is unable to push a button or tell us when he hears something, so we rely on his actions or responses to the noise. For example: If he is bouncing around, what does he do when a noise is presented? Typically, he will calm to listen to the noise. The end result indicated that he was hearing in the 45db to 55db range. This would be equivalent to someone with moderate hearing loss. This is about where we were several months ago, so I'm feeling a little frustrated. I have to keep reminding myself that the test is very subjective. I know that he is doing a lot better then he was several months ago. I also know that he responds to my voice in a whisper or from across the room. So, I'm pretty sure that his hearing is better then the subjective test indicated. The noises that were presented were not normal everyday noises. So, he may not have known how to process the noises. The audiologist has somewhat of a soft voice and Carver tends to respond to a little more excited voice. So, regardless of the written test results, Carver is hearing and responding and things continue to improve. So, these are still good test results. The audiologist also checked his eardrums and found that he has fluid behind his right ear (the same ear with the seroma). I'm not sure if the fluid is related to the seroma or not. It's odd that the fluid isn't going away behind the ear because Carver has been on a pretty strong antibiotic for about 2 weeks for a sinus infection. The audiologist is going to check the right ear again next week. If the fluid is still present, we'll have to see the ENT.