Kinnick Kay and Carver Lee: December 2011

Thursday, December 29, 2011

December 28th, 2011

Kinnick and Carver have spent the majority of the holiday sick, sick, sick. Carver started it with a bad sinus infection and a cough that wouldn't stop. We got him an antibiotic and that seems to have helped. He's still not 100%, but he's well on his way. Kinnick picked up crappy lungs and an ear infection. We got her an antibiotic, and that seemed to help her get better. Now, she's sick again (while still on the antibiotic). She's vomiting, has a fever, and requiring lots of oxygen. Anytime she gets a bug, her lungs take a hit right away.

Santa came to the house again this year to visit the kids.

Carver wasn't feeling well, but still sat on Santa's lap.

Santa gave Carver a cool Football with bells inside. He also got a full size Basketball with bells inside of it. He loves them! He's such a little stud. He chases both of them across the room.

Kinnick was happy to see Santa and now asks when Santa is coming back to bring her more presents to open. He brought her a cozy coup gas pump that she had been asking for.

This is a picture of Kinnick enjoying her new Rody pony. She loves to bounce.

We spent Christmas Eve with family - Aunt Tonya, Uncle Bill, Cousins Miles and Tyler and all of the kids. We had a good time decorating cookies, making our own pizza, and playing games.

Miles and Tyler

Kirsten, Harry, and Tyler snacking.

Gregory, Kinnick, Gage, and Hayden decorating cookies.

Make your own pizzas was fun.

Sunday, December 4, 2011

It's starting to look a lot like Christmas....

Our family room is full of special needs equipment and toys. So, we've had to put our Christmas tree in the basement family room for the past 4 years. We spend most of our time in the upstairs family room, so this year I moved things around to make room for the Christmas tree. I wanted Kinnick and Carver to enjoy the tree and the lights.

Kinnick loves the lights. She's not quite sure what to think of a tree in the family room.

She wanted to touch all of the lights.

I'm hoping that she won't try to pull the lights off the tree. So far, so good.

Big Brother Hayden enjoyed looking at the nativity scene. He wanted to tell me all about Jesus' Birthday and everyone that came to celebrate his birthday.

Big brother Hayden helped decorate the tree.

December 1st, 2011 - Right Ear Activation Day!!

Finally!!! Carver's Right ear is activated. He is bilateral once again! Carver was ready to be re-implanted a year ago when Advanced Bionics and the FDA pulled the Harmony CI's off the shelf. It took an entire year for the Harmony CI's to be released by Advanced Bionics and the FDA.

The above picture was taken during activation. Crying is a very good indication that the activation was a success. No response would be bad. We know that the nerve(s) were stimulated. He got the best response from the lower frequencies, which would include speech sounds. Carver will require a lot of therapy to get this implant up to speed with his left CI. Lucky for him, he has an excellent group of people eager to work with him.

Carver was completely exhausted after school. I found him crashed in the corner around 4:30pm. His poor brain was on overload trying to figure out his new ear.

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

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