Kinnick Kay and Carver Lee: March 12, 2008

Wednesday, March 12, 2008

March 12, 2008

Sorry that it has been a while. Carver has been sick. This is the first time that he has been sick since he came home from the hospital. He has a terrible cough and we had to increase his oxygen to 3/4 lt. This isn't bad considering what it could be. However, it delayed his G-tube surgery. They couldn't do surgery since he was sick. Since he has been sick, he doesn't want to eat (worse then normal). He's been taking about 8-10 oz a day. Yesterday was a better day and this morning has started off better. He took 5 oz his first feed today - So, things have to be getting better. We're hoping to get his surgery sometime next week. He really needs the G-tube to make up the missing calories during the day. I can't remember if I mentioned this or not... we started giving him bananas once a day - he loves them. Maybe he'll do better on baby food then he did on formula.

Kinnick is doing good. She's so happy and playful now. She's trying to make sounds and rolls to her tummy ALL of the time. I can't keep her where I put her anymore. She's holding her head really good now. She still will not suck on her bottle. This is really weird because before her last hospitalization she was taking her bottle. I'm not sure what happened here. She just wants to chew on the nipple. I think it might have something to do with teething. It's very frustrating and my speech therapist doesn't have any suggestions how to get her to suck again. I've been giving her a pacifier. It's really funny seeing it in her little mouth. She just chews on it. I'm hoping she'll start sucking on it.

Kinnick goes in on 3/24 for her ABR hearing test. I can't wait for the results. She's really acting like she hears, so I'm hoping for good news.

A few pictures below......

*
Kinnick with her pacifier
*

*
Kinnick working on holding her head up
*

Kinnick in her bumbo

Sleepy head - Kinnick (you can see part of her bad hair cut - courtesy of Wesley Hospital)

Carver with his favorite nurse - Freddie

Poor sleepy head Carver

5 comments:

Anonymous said...: I'm so glad to see the babies are growing and doing well. I sure hope Carver is better soon! They are getting so cute. I love how their hair sticks up like that. Charlie's does the same thing! I'm anxious to hear about Kinnick's ABR! Keep us posted. We love you all!
Neva
PS-- I can't believe someone would write such a nasty comment posted earlier and then not even claim it! I'm so sorry!; March 12, 2008 at 2:32 PM
Anonymous said...: Love the pics. They are getting so big. I can't believe they are almost a 1 year old. Talk to you soon.

Suzette; March 13, 2008 at 9:28 AM
Mommato4miracles said...: Sorry to hear Carver is sick. You are in our prayers. We will be praying for Kinnick;s hearing:); March 13, 2008 at 10:27 AM
23wktwinsmommy said...: They are soooo stinkin cute!!!!; March 13, 2008 at 9:00 PM
24weeker's Mama said...: Aloha,
I am glad Carver feels better now & Kinnick is more playful. So happy to see them. Shanon, sam has to wear eyeglasses now, gosh he has to wear them all the time except when he is sleeping.

Kisses for Carver & Kinnick.

Love,
Yani; March 14, 2008 at 3:30 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