July 27th, 2010

Kat came to see Carver again today. We just love our visits from Kat. She's just full of knowledge and new things to try.

During her last visit, she asked us to place Carver's spoon on the tray of his high chair (making noise when placing it), then we were told to ask Carver to "get his spoon". Once he picks up the spoon, we use hand-over-hand to help him pretend eat. We pretend to scoop up food with the spoon and then bring the spoon to his mouth. We've been doing this at every meal for the past 3 weeks. Now, he picks up the spoon when asked and will even automatically bring the spoon to his mouth most of the time. We've also started having him touch his bottle of milk before giving him a drink. We always tell him what he is touching before giving him a drink.

For this visit, we got to show off Carver's "cause and effect" abilities. Carver has a hammer that lights up when you bang it on something. Carver likes to bang the hammer and then bring the lighted end up to his eye to see the light. He knows when the light goes out that he needs to bang the hammer again. He'll do this several times before getting bored with the toy. We also got to show off Carver's ability to "roll with purpose". We got out Carver's Mozart music cube and showed Kat how Carver works to get the cube in a position where he can press the buttons to see the lights and listen to the music. Kat's always excited to see Carver's accomplishments. Once we were done showing off, Kat gave us something new to work on....

1.) Present the target vocalization every five seconds during a 1-minute time period.

2.) Introduce 5 times a day

3.) Initially, emphasize the following (target vocalizations):

/i/ as in eat

/a/ as in father

/u/ as in you

/ae/ as in at

4.) As Carver begins to imitate and spontaneously produce a variety of vowels, canonical syllables can be highlighted. Model salient consonants /b/, /p/, /m/, and /w/

The hope is that by "flooding" Carver with these sounds, he will eventually start to imitate these sounds. So, we're off and running. We're going to give it a try.

Rolling with purpose

One of Carver's IEP goals is to roll with purpose. Carver isn't able to crawl, walk, or sit independently. However, he can roll - all over the place. We've never really been able to tell if he is purposely rolling or not. Is it all just rolling to be rolling? A big part of the struggle is his lack of vision. Why would you roll towards something you can't see? Carver has minimal vision in one eye and no vision in the other eye. The vision that he has in one eye is light perception and shadows. So, there really isn't much usable vision. Another problem is his hearing. He's deaf. His cochlear implants help him hear, but right now he only has one cochlear implant (we removed the other due to infection). You only need one ear to hear, but you need 2 ears to localize sound. The third problem is his spastic CP. Carver has a really hard time using his right arm/hand. So, he relies on his left arm/hand to do things. Can you see the challenge? Anyway, I am convinced that Carver is capable of rolling with purpose. Why? He has a favorite Mozart music cube. The buttons are really easy to push, so he can play the music himself. Not only does it play music, but it also lights up. If I press the buttons on the music cube, bring it across Carver's face (so he can see it), and then place it on Carver's right side of his body (the side that is more difficult for him to use and has no vision), he will work and work to get to the other side of the music cube so that he can press the buttons himself and watch the lights. There are times that he will work for quite awhile and then lose interest because he isn't able to get where he needs to be, but he gives it a really good try before giving up.

SCDDO - MRDD Waiver information

Sedgwick County Developmental Disability Organization - MRDD Waiver information

Kinnick and Carver are on the MRDD Waiver. This is a needs based program based on being mentally retarded or developmentally delayed - not income based. So, regardless of income, you may qualify. What benefit are we getting from the MRDD waiver? If you are on this program at age 5, you will receive a medicaid card. Prior to turning age 5 (while on the waiting list), you qualify for case management and family support funds. Case management is very helpful in helping you find funding sources if needed. The family support funds have provided all of K&C's expensive equipment needs. Due to budget cuts, the family support funds are not available this year, but could return at any time. You shouldn't wait to sign up for this program. There is a waiting list to receive the medicaid card at age 5. The waiting list is 2 years or longer. Therefore the sooner you get on the waiting list the better. You do not have to be 5 to be on the waiting list.

How do you apply for the MRDD Waiver program?

Rachel Ryan

Intake and Referral Coordinator (SCDDO)

615 N. Main

Wichita, KS 67203

(316)-660-7640

http://www.sedgwickcounty.org/cddo

The "Fly-Fly" twins

I have looked everywhere for another "Fly-Fly". Kinnick's "Fly-Fly" is getting to be so disgusting (well loved). Fly-Fly doesn't look any better after being washed in the washing machine.

Fly-Fly #1 ....

I finally found a new "Fly-Fly" on Ebay.

Fly-Fly #2....

Now, she wants both of them. She's not parting with "Fly-Fly #1". So, they are now known as the "Fly-Fly twins".

Our trip to KC - World's of Fun

It's so hard to find 1-0n-1 time with my other children. Kinnick and Carver require a lot of my time. So, I took yesterday off work and me and my older boys went to Kansas City - Worlds of Fun. It was nice to spend some alone time with them and they enjoyed the day.

Harrison (13), Gregory (17), and me (Shanon - we won't talk about my age :o))

You know your child is too old for their infant swing when...

I don't know what we're going to do when we finally hit the weight limit for the infant swing. Kinnick and Carver both LOVE their infant swing. However, how many children are able to swing themselves in an infant swing?

Carver donates his "ears"...

Carver started his hearing journey with Hearing Aids. We knew they wouldn't help him hear, but the medical world red tape makes you "try" hearing aids before you can be approved for Cochlear Implants. We have good insurance, therefore we got Oticon hearing aids at no cost out of pocket. This is a good brand of hearing aids and is designed to accommodate someone with profound hearing loss. Carver's hearing was beyond profound, he didn't even respond to 120db - this is equivalent to the sound of a Jet plane. Carver tried the hearing aids for 6 long wasted months. Then he received his first Cochlear Implant. Ten months later, he received his second Cochlear Implant. Once you receive a Cochlear Implant, there is no going back. There is no possible way to hear without a Cochlear Implant after you've been implanted. We were left with a very nice set of hearing aids. I put them away in a box as a "keepsake" - until I received an email from a mother looking for hearing aids for a darling 10 year old deaf girl named Galina from Belarus. This mother has been hosting Galina as part of the American Belarusian Relief Organization for the past 2 years, and is hosting her again this year. Galina's family isn't able to afford hearing aids. Galina is able to borrow hearing aids from her school during the school year, but is left with no hearing aids in the summer. So, we packed up Carver's hearing aids and shipped them to Galina. It feels good to be able to give someone the gift of hearing. I can't wait until Carver is able to understand what he has done for someone else. Galina was very excited to receive the gift. We truly hope she enjoys her new "ears".

Here's a picture of Galina....

Kinnick on her Rocking Puppy

Just sharing a short video of Kinnick rocking on her Rocking Puppy tonight...

How to put on a bandana to help hold a CI in place

One of the hardest things to do is to keep a CI in place. Children with CI's need to have their CI's on as much as possible to get the full benefit of having CI's.

Here is a quick video that shows how to put on a bandana to help hold a CI in place...

July 3rd, 2010

I'm fortunate to get 2 days off for the July 4th holiday. This year we were given Friday and Monday off. So, Friday, nurse Jane and I packed Kinnick and Carver up and took them to the Zoo. I always struggle with taking them to the Zoo. I hate to deprive them of the Zoo experience, but what are they being deprived of when they can't see? We went ahead and took them - what could it hurt? They can hear, so we thought they might enjoy the sounds. They can smell, so maybe they'll enjoy the smells? Ok, maybe not that one. We went to the petting zoo. Carver can't walk, so unless we chase an animal with his stroller, or an animal comes up to the stroller, then Carver isn't getting much out of it - no touching. However, there were some nice sounds and not so nice smells. We didn't force Kinnick to touch anything. The rain forest was nice. Carver got to hear all kinds of sounds in the rain forest - so this made the trip worth it. I think Kinnick enjoyed the rain forest, too. We didn't hear any complaints out of either of them. We only stayed a short while and then headed back home.

Funny story about K&C's hearing. They pick up sounds much quicker then someone that can see. I was feeding Kinnick this morning, and she kept laughing. I couldn't figure out what was so funny. Finally, I figured it out. A fly kept "buzzing" around her head. She could hear the "Bzzzzz" sound. I really didn't notice it until I saw it. So, I asked her if she thought the "Bzzzzz" was funny, and she started laughing again. I'm sure she wouldn't have found it so funny if it landed on her, but she was enjoying the sound.