Kinnick Kay and Carver Lee: April 5, 2008

Saturday, April 5, 2008

April 5, 2008

Carver is doing so much better now that he is getting better nutrition. It's amazing how much he has changed in the past couple of weeks. He's playing with toys (both hands), staying up later in the evenings, gaining weight by the minute (it seems), and is so much more playful. I can't wait until he gets weighted again. Dr. Knight (surgeon) weighed him with his clothes on this past Wednesday and he was almost 16 lbs. This is quite a jump after gaining an ounce or two the previous month. This is almost a pound in just a couple of weeks.

Kinnick continues to do well. Both babies are home and bug free!

We are preparing to return to MI to see our eye specialist. We will leave on April 22nd. Both babies will be admitted over night so they can be stablized prior to their sedation the following day. They will be evaluated while sedated on April 23rd. If surgery is needed, then they will do surgery on the eye of choice during the evaluation. If the other eye needs surgery, it will be scheduled within the week. It is possible that no surgery is needed. Please pray no surgery is needed. I'm working on a medical transport again. This time everything is falling into place quite nicely - much different from the last time we went. If all goes well, we will be home as early as April 24th.

We will be seeing Carver's ENT April 11th to discuss his hearing and where we go from here. My guess is that Carver will be scheduled for another ABR hearing test. If the test still shows that carver is profoundly deaf in both ears, we will discuss cochlear implants. This is a surgically implanted electronic device that provides a sense of sound to a person who is profoundly deaf or severely hard of hearing. Unlike hearing aids, the cochlear implant does not amplify sound, but works by directly stimulating any functioning auditory nerves inside the cochlea with electrical impulses. I've heard amazing success stories about these implants. If we can give Carver back one of his missing senses, then that is what we want to do. This could make a huge difference in Carver's ability to learn and the ability for others to teach him. Being deaf/blind makes teaching/learning very difficult. There is not a large community of deaf/blind individuals in the Wichita area, nor is there enough skilled professionals in the area available to teach Carver.

4 comments:

Amy said...: Hey Shannon,

We wanted to invite you and Bob and the whole family over again for a cookout/game on Monday night at 6:00. We had such fun last night we just decided to invite everyone for the finals. Would love to see you!

Amy; April 6, 2008 at 11:39 AM
24weeker's Mama said...: Dear Shanon, our prayers to Carver & Kinnick. Have a safe trip to MI. Oh if you see nurse Sue again, please say hello from me. I hope she still remember me & Sam. : )
Also hello to Nurse Darlene (NICU), she was so sad when Sam was transfered to the next room.

Thank you,
Yani & Sammy; April 6, 2008 at 4:56 PM
Mommato4miracles said...: God bless you and your babies. So glad to hear Carver is growing well. We will be saying lots of prayers for their eyes (NO SURGERY) and also for Carver's hearing and cochlear implants.; April 6, 2008 at 7:53 PM
Anonymous said...: Shanon,
I have been keeping up on your little ones over the last several months. I am very happy to see you continuing to get good news.

I wish you the best on your next trip and hope you continue to be blessed with good news.; April 8, 2008 at 7:08 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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