Kinnick Kay and Carver Lee

Wednesday, July 16, 2008

The fishing trip - Big Brother Hayden and Daddy

Hayden's first fishing trip with daddy. They fished in one of the ponds in our sub-division. They caught two "huge" fish. You know how the story goes....

Saturday, July 12, 2008

July 12, 2008

We've been trying to get Carver to lift his head. He can lift it, but doesn't seem to like lifting it. He's always looking for a place to rest his head. He should be able to see out of his right eye based on the mechanics of the eye. We're not sure how the brain is processing, but mechanically he should be able to see pretty good. We bought him a new mirror. He's always liked admiring himself in the mirror. We're hoping he'll lift his head to see himself.

July 11th, 2008 - 1 year Adjusted Birthday

Today was Kinnick and Carver's 1 year Adjusted Birthday. They enjoyed the same cake we had on their actual birthday - March 29th. Carver was awake this time and even sampled the cake. 17 weeks makes a big difference. The picture at the top of the blog was taken on their actual birthday.

Kinnick, Hayden (big brother), and Carver waiting for a piece of cake.

Hmmmm.... does this picture say anything about Kinnick's personality?? Poor Carver, he just takes what she has to offer.

Still waiting on our cake....

Oh boy.... it was worth the wait!!

Hey, this cake is pretty darn good!

Thursday, July 10, 2008

July 10th, 2008

Tomorrow Kinnick and Carver will be 1 year adjusted. So, we are going to celebrate with a cake party. We froze the rest of their birthday cake from March. Hopefully they'll be able to eat a bite tomorrow.

Our Case Manager stopped in today to check on the babies. We received the following information:

Kinnick:

16 lb 8 oz (gained 1/2 a pound in the last 2 weeks!)

Head: 43 cm

Length: 27 1/2 in (gained a couple of inches!)

Carver:

19 lb (hasn't gained anything in the past 2 weeks - I think it's time for more food)

Head: 43 cm

Length: 28 in (gained a couple of inches!)

Kinnick is supposed to get 720 calories a day. We've been giving her about 900 the past couple of weeks. The doctor is going to review her latest weight and let us know how much she should be eating a day. She's eating so good. I think maybe too good - if that is possible.

Carver isn't eating much, at all. In fact, he's only getting about 550 calories. He has been gaining about a pound a month. However, it looks like he's starting to slow down. He doesn't seem to require as many calories as Kinnick. He's not as active as Kinnick and his lungs are better overall. The doctor is going to review his latest weight and let us know how much he should be getting a day. We're continuing to work with his oral feeds. He's starting to accept some juice. This is a positive step.

We see Carver's ENT tomorrow. We will discuss the cochlear implants and when we can get the first ear implanted. Hopefully within a month. I'm excited to get them going.

Carver doesn't really care to hold toys. He doesn't see well and even if they make noise, he can't hear the noise. The work of holding the toys doesn't seem to be worth the reward. Our speech therapist recommended adding another sensory input - like a vibrating toy. Well, it's hard to find vibrating toys that he can hold easily. In a nice way, she recommended going to a store that is not intended for children's toys. So, my husband and I (because neither of us was willing to go alone) went to the adult toy store and purchased a water missile that vibrates. It's blue and fits nicely in his hand. I tried to find one that looked like a rattle. He loves it and so does Kinnick. He actually holds it and bangs it on everything. Now, he's starting to grab and hold other toys. He also uses it as a teether. So, now you know what the blue missile is just in case it shows up in a picture.

Wednesday, July 9, 2008

July 9th, 2008

Today, I had lunch with one of my favorite Wesley NICU nurses, Kelly. She got to spend some time with Kinnick and Carver. She took care of Kinnick and Carver during their 5 month stay at the Wesley NICU. It was very odd... Kinnick didn't even wimper when Kelly held her. She always gets upset when new people are in the house. Maybe she remembers her.

Kelly and Kinnick.

Kelly and Carver.

July 3rd, 2008

I took these pictures on July 3rd - prior to our big walk.

How do you like my pink shades? Do you think they match my dress?

I think I look pretty cool in my blue shades.

I thought I would try Carver's shades since he looked so cool in them. Besides, they fit better.

Wednesday, July 2, 2008

Derrik's Ride for Childhood Cancer Research

Tori, this post is for you and Derrik....

Tori is a friend that I went to school with. She is also a very good friend to my sister. Tori lost her son Derrik at a very young age to a rare form of childhood cancer. Every year since Derrik passed, Tori organizes a motorcycle ride and meal to raise money for childhood cancer research. This was their 6th year. Over 300 meals were prepared for this years ride. The shirts are too cute.

Thinking of you Tori. My heart goes out to you and your family.

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.