Kinnick Kay and Carver Lee: April 16th, 2010

Friday, April 16, 2010

April 16th, 2010

Today, Kinnick's OT and PT brought a box of beans. Kinnick slowly allowed us to stand her up in the beans without socks. Then, slowly she allowed us to sit her in the beans while we covered her feet in the beans and dropped beans on her hands and head. Then slowly she touched the beans and tossed some over the side of the box.

Tonight while I was working in the kitchen, I heard a noise. When I looked in the great room, this is what I found.....

I guess she has accepted the bean box! I love this "starting with the feet" approach! It really works!

Carver news....

Carver is still unable to wear his right CI. So, he's only getting to work on hearing with one ear. However, he has started copying us when we growl at him. I'll growl at him and then he'll growl back. He doesn't do it every time, yet. I'm going to keep my flip handy, so I can tape it. It's so cute! This is really pretty big news in my mind. If he can copy a growl, we're onto something!

5 comments:

Sherri said...: NO WAY! YEAH for Kinnick! She is one amazing lil girl! This will open up so many doors for her if she is able to accept different textures :) What a BIG girl!

Man you kid are literally on a roll! That is HUGE for Carver :) I agree with you that for him to mimic you is pretty darn amazing!; April 17, 2010 at 10:23 AM
Jacolyn said...: We did the same thing the the triplets were younger...played in the beans. I was always afraid they would choke on them. Way to go Kinnick!!; April 18, 2010 at 4:13 PM
Anonymous said...: This is really nice! More good things to come, eh? Barbara; April 20, 2010 at 4:37 PM
Lisa Wolfe said...: Yea!!!! Carver can growl! Our son also has bilateral CI's (actived on right for 6 months and left for 1 month) and I agree hearing a growl from them for the first time is AMAZING! That was also my son's first sound. Boys like growls!!! Another sound that my son seems to love is when I Buzz like a bee. I also tickle him when I do it so that might be why. :) Regardless it gets his attention everytime.

Also so cool about Kinnick and the beans. That green and yellow spoon in your picture was my son's favorite teething tool. He didn't ever eat with it but he loved to have it in his mouth. He also has a feeding disorder.

Your kids are beautiful! You are an amazing loving mother and are such an inspiration!

Thanks for sharing! Can't wait to read more about their awesome accomplishments.

Lisa Wolfe; April 20, 2010 at 9:27 PM
Lisa Wolfe said...: Yeah!!!! Carver can growl! Our son also has bilateral CI's (actived on right for 6 months and left for 1 month) and I agree hearing a growl from them for the first time is AMAZING! That was also my son's first sound. Boys like growls!!! Another sound that my son seems to love is when I Buzz like a bee. I also tickle him when I do it so that might be why. :) Regardless it gets his attention everytime.

Also so cool about Kinnick and the beans. That green and yellow spoon in your picture was my son's favorite teething tool. He didn't ever eat with it but he loved to have it in his mouth. He also has a feeding disorder.

Your kids are beautiful! You are an amazing loving mother and are such an inspiration!

Thanks for sharing! Can't wait to read more about their awesome accomplishments.

Lisa Wolfe; April 20, 2010 at 9:27 PM

Post a Comment

Disability Determination when you don't qualify Financially

In order to extend Cobra medical coverage 11 months due to a Disabled member of the family, a Disability Determination Award letter is required. How do you secure a Disability Determination if you are not intitled to an Award? You ask for a Special Determination (SSA-553) of Disability. How did we get this? Here are my contacts:

We live in Wichita, KS. My contact at the Social Security Administration in Wichita was Nick Janzen. His phone number is 866-931-4486.

The Kansas/Nebraska/Iowa/Missouri Regional SSA office is located in Kansas City. My contact in the Kansas City Office is Mike Stiles. His phone number is 816-936-5740. Mike is able to communicate with all of the Disability Experts including those at the national headquarters in Baltimore, MD. Mike was able to guide my Wichita, KS contact, Nick in order to complete the necessary paperwork to obtain a Disability Determination even though we didn't qualify under Title II or Title XV1.

Here's is how it worked:

Nick completed a paper SSA-3820 (for a child), and obtained as much medical evidence as possible from me. He also prepared an SSA-5002 with the date of my qualiffying event (date I went on Cobra initially). This material was then sent to the following Address:

Office of Medical and Vocational Expertise

P.O. Box 17786

Baltimore, MD 21235-7786

A Manual Development Worksheet (MDW) was used to document my case.

The OMVE will prepare and release the appropriate notice for this type of case and will return the completed case to the field office along with a special determination (SSA-553) of disability and a copy of the notice.

Overnight address:

SSA, Office of Medical and Vocational Expertise

1st Floor Oak Meadows Building

6401 Security Blvd

Baltimore, MD 21235

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. 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

Kansas Medicaid - Travel Expenses

I'm posting this to help others. It has been a struggle to get Medicaid to pay for our travel expenses. I have been able to get them to commit to paying $81.00/day hotel expense, $27.00/day for food, and .20/mile for mileage to/from.

The KEY is to call the number(s) below before you leave on the trip (unless it is an emergency).

1-800-285-4978 Option 2 (Out of State Prior Auth)
The doctor from the referring hospital/office and the doctor that you will be seeing will need to send paperwork for your approval. You can call this number to confirm this is getting done.

1-888-561-8747 x5002 (Meals and Lodging)
Let them know where you are going and how long you think you will be there. You will have to call every 2 wks to extend the time. They only approve 2 wks at a time.

1-888-240-6497 (Transportation)
Let them know where you are going and how long you think you will be there. You will have to call every 2 wks to extend the time. They only approve 2 wks at a time.

Medical Transportation Approval Process

In order to obtain approval for Medical Transport, the following steps were followed:

1.) Kinnick and Carver's primary physician (Pediatrician) wrote a "Letter of Medical Necessity". Below is a small sampling of the letter:

LETTER OF MEDICAL NECESSITY

Date:
Insurance Company:
RE: Kinnick and Carver
DOB:
Diagnosis: ROP, 23 wk gestation twins, severe chronic lung disease.

Attention Medical Director:

The letter requested approval for an air ambulance round trip flight for the specific eye surgery. It then listed medical reasons why Kinnick and Carver's medical needs meet criteria for air ambulance transport for their eye surgery. Their medical needs consisted of the following:

Continuous oxygen per nasal cannula
Continuous cardiac and respiratory monitoring
Feeding intolerance that requires gastrostomy feeds
Deep suctioning using a suction machine and catheter

Signed by the Primary Physician

2.) My Primary Physician faxed the Letter to Kinnick and Carver's Case Manager at my Insurance Company.

3.) Kinnick and Carver's Case Manager forwarded the Letter to the Medical Director for approval. This process only took a couple of days.

4.) Kinnick and Carver's Case Manager faxed the Approval to Air Ambulance and my Primary Physician.

Kinnick Kay and Carver Lee

Our Journey

Email me:

Links

Blog Archive

Resources

Blogs I like to follow