Kinnick Kay and Carver Lee: December 5th, 2008

Friday, December 5, 2008

December 5th, 2008

Kinnick and Carver got their 2nd synagis shots on Wednesday. They were less then thrilled. They are big enough now that it takes 2 shots - 1 in each leg. Kinnick FINALLY gained some weight. She now weights 17 lb 10 oz. That is a 10 oz gain. Carver also gained some weight. He is now 20 lbs even!! That is a 14 oz gain. I have no idea what we did different this month.

My new weekday nurse is turning out to be really good. Good enough that I have decided to try going back to work part time. This will still allow me to go to appointments and will allow me to still be involved in K&C's daily needs. I have some interviews on Wednesday, so I hope to hear more by the end of next week.

Kinnick is sitting up more and more by herself. I thinks she's got it pretty well mastered. We're still working on trying to get her to crawl - we have a long way to go. Carver hasn't really made any progress. We're still working on sitting.

Kinnick is screaming so I need to run. I just wanted to put out a quick update. I'll try to update more soon.

4 comments:

Anonymous said...: So glad to hear you found a great nurse!! What an answer to our prayers! Will you be going back to Koch? Wish you the best of luck!
Love
Neva; December 6, 2008 at 8:24 AM
Yani Hawaii said...: Hi Shanon, wow carver gained 14 lbs in a month? Sammy is also 20 lbs even but now they scaled him on toddler scale. Stand up with clothes & shoes. So i think his 'real weight' is still 19lbs. Anyway, we have rotated his car seat to front face now ,, :D

Good luck for the interviews.
btw I also joined some of preemie groups on Yahoo, they called preemie-list and the other one is preemie chat

luv,
yani; December 8, 2008 at 11:33 AM
Anonymous said...: Thats good news. Best of luck on your interviews and am looking forward to getting some real encouraging news about Carvers hearing on the 16th.

Prayers & Happy Thoughts; December 9, 2008 at 3:16 PM
Kristina said...: Hello. I found your blog through CI Circle and am amazed at how your little ones are progressing! My daughter, Emma, received her CI in Nov. and was activated 12/10 (Wed.) and it was such a great present for the holidays. I see Carver will be activated next week and I hope it goes well! Emma also has CP along with the hearing loss as a result of congenital CMV during my pregnancy. We, too, are still working on sitting which makes it a bit of a struggle to keep the magnet on so I ordered some of the pilot caps. However, it's a pleasure to see her so much more engaged in everything since the CI was turned on only 2 days ago!

Good luck and I'll be thinking of you and Carver on the 16th.
Kristina in DE; December 12, 2008 at 2:13 PM

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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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