Kinnick Kay and Carver Lee: January 1st, 2009

Thursday, January 1, 2009

January 1st, 2009

I hope everyone had a Happy New Year!

Kinnick and Carver rang in the new year with synagis shots. This meant a weight check. Carver lost weight. He has something against weighing 20 lbs. He weighs 19 lbs 11 oz. Kinnick stayed the same at 17 lbs 10 oz. She had been sick and didn't eat anything for 2 weeks. We were lucky that she didn't lose any more then she did. She was getting tube fed just formula.

Carver is managing to get around without crawling. He just rolls and scoots. The other day, we found him under the little play table..

Here's a picture of the "Gangster" hat that I promised. It's not very attractive, but it really helps hold the CI in place. When going in public, we just put the bandanna on top of the "Gangster" hat. I'm still waiting on my Pilot Caps. They're supposed to be here next week. If the Pilot Caps don't work, I'll just invest in some colored "Gangster" hats and more bandannas.

4 comments:

Jodi said...: Looks like Kinnick and Olivia are both at 17 lbs 10 oz. I'm sure after this week, she will lose weight again since she's eating hardly anything. Now, I have gotta get Olivia to grow some beautiful hair like Kinnick. Poor girl takes after me who didn't have hair until I was 3. That's probably best since it would be a nightmare to get her hair cut right now. She never sits still. So glad that Carver is doing well. He looks adorable in his bandanas!; January 1, 2009 at 6:44 PM
Drew's Mom said...: I think Carver looks so cute in his gangsta' hat! He is just darling. I'm really hopeful that the pilot caps will work well for you. I can't believe how long they are taking. Darn holidays!; January 2, 2009 at 12:02 PM
Anonymous said...: I can't believe how well Carver is doing getting all over your house! I have to say that I believe part of the reason the twins are doing so well is because you have been such a good persistent mom!! I'm so proud of you never giving up and how you continue to fight for the best for your kids!! You are awesome! God gave them the best mother! Hope you and Bob are able to enjoy a bit of a break together!
Love
Neva
PS- Carver looks adorable in his "hat"; January 2, 2009 at 3:44 PM
Emily said...: I love the gangster look! It suits him well. They're both so precious. Is there a reason why the GI doesn't have you giving them more calories through their tube so that they grow better? I know that Dakota doesn't grow well at all but we've always just increased her calories until we got to the point where she was growing even though that means giving her 1800-2000 calories a day which is far more than any child should ever need.; January 2, 2009 at 5:56 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