Sunday, January 31, 2010

Medicaid Waiver Programs by State

The following website lists Medicaid Waiver programs by State. Typically, a Wavier program will waive your income. For example: The TA (Technology Assisted) Waiver - waives your income if you meet the guidelines for being Technology Assisted. So, therefore there are no income guidelines to qualify for the program. It is needs based. In this case the need is based on being technology assisted.

The top of the page allows you to select a State. The results display below. Waiver programs differ by State and sometimes even by County. This is just a beginning point. Check out the Waivers in your State, then see if you meet the criteria.

Friday, January 29, 2010

January 29th, 2010

We have been so fortunate to get all of the help, support, and funding that we have received for Kinnick and Carver. Working to get all of the things Kinnick and Carver need can be so overwhelming and exhausting. With that said, some big changes are heading our way. In some ways, I'm excited to see what the next step is and what it has to offer Kinnick and Carver and in other ways, I'm very sad to give up what we've had and know.

Kinnick and Carver will start pre-school on their 3rd birthday. I know it's a great school, but it's a really scary change, and exposure to lots of other kids. They need what school will have to offer. I'm not an expert when it comes to teaching and certainly not an expert when it comes to teaching a blind or blind/deaf child.

Once Kinnick and Carver start school, we'll lose our Rainbows staff. Rainbows has been coming to our home for nearly 2 years. We receive PT, OT, SLP, TOD, VT, and early childhood development. Rainbows has been instrumental in helping us get much needed equipment for Kinnick and Carver. I'm very thankful for all of their help and guidance. I'm one of those parents that never feels like my kids get enough. I'm sure that I'm hard to deal with and don't tell those involved how much I truly appreciate them. The truth is that I really appreciate everything that they do for my children and I'm truly going to miss each and every one of them. It's like they're a part of our family, and I hate to let go of them. Where does the time go?

What else... we are gearing up for our next trip to MI. We will hit the road on February 22nd - Nurse Marci, me, and K&C. Kinnick and Carver have EUA's on February 24th. It's a given that Kinnick will have eye surgery due to the high eye pressure in her right eye. The pressure is at 37 - way too high. I'm hopeful that Carver will not require any surgery. His eye is still pretty irritated for some reason. If it doesn't get better soon, he will have to go in for another EUA here in Wichita. I really don't want to have him sedated again. While in MI, we're hoping to see some of our micro-preemie moms, dads, and kids.

Bob and I are planning some time away in March. We don't get much time together, so we really need this time.

Thursday, January 28, 2010

January 28th, 2010

Today was Carver's day to play games on the computer. He's playing "A Rainy Day".

Carver was a little impatient with the button. He doesn't quite understand when he is supposed to push the button. With some time, I think he'll figure it out.

He seemed to enjoy some of the sounds. He even giggled when he played the "Five Little Monkeys".

Wednesday, January 27, 2010

January 27th, 2010

It's been another busy week. Cindy Jones (Assistive Technology Specialist) with SKIL (Southeast Kansas Independent Living Resource Center), came to the house yesterday to set the computer up to use switches. She also introduced us to a free website (www.HelpKidzLearn) full of fun games that can be played with switches or just a mouse click. Check it out! It's a cute website.

Below is a picture of Kinnick playing 5 little monkeys. It didn't take her any time at all to figure it out. She has minimal vision, but learned to wait until the noise stopped to press the button. We're going to work with Carver tomorrow.

Today, we went for Carver's final fitting in his new custom fit "Zippie" tilt-n-space wheelchair. It has plenty of room for growth.

I didn't do a very good job of putting on the ankle supports. I was just so excited, I had to get a picture.

I just took these pictures. It's late for Carver, so he's looking a little sleepy.

Kinnick got her 3rd set of Synagis shots today. That was a blast. She knows what's going to happen now just by the smell of the alcohol. I feel so sorry for her.

Tomorrow, Carver is going to be seen by Dr. Varenhorst, retinologist. His eye doesn't seem to be healing after his last surgery. It looks like it's infected. If not, then his sinus infection is causing an infection in the eye. I'm a little stressed over it.

Tuesday, January 26, 2010

January 26th, 2010

Ok... Who does the swing belong to?

Kinnick is going to be very disappointed some day when she figures out that she is not an only child.

Sunday, January 24, 2010

January 24th, 2010

Well, big brother Hayden got his first stitches this weekend - or, I should say staples. He ran into the great room to hide from Dad, slipped, and gashed his head (in 2 places) on the coffee table. Of course, it was 10:00pm. So, off to the emergency room. Bob and Hayden didn't get home until around 1:00am. He got 1 staple in one cut and 2 staples in the other. He was quite the trooper. Out of 7 kids, he's the first to need stitches. He keeps asking when he's going to get the staples out. He doesn't like having the staples in his head. Poor guy. Hopefully the Spiderman moves will slow down, now. Spiderman jumps from once piece of furniture to the next. We're lucky that Spiderman hasn't gashed his head before now.

Friday, January 22, 2010

Funding Source for Synagis Co-Pay/Deductable

For those of you that know me, you know that I'm always looking for funding sources. Every little bit helps. We don't have an extra couple thousand dollars laying around for every medical bill/item that comes up. For example, Kinnick was approved for Synagis (RSV) again this year. The pharmacy is billing my insurance $8,271.00 per shot - she gets 5 shots. That's not what my insurance company has agreed to pay. They have an agreement to pay $2,404.30 per shot. I have a $2,400.00 deductable. After the deductable is met, we have to pay 10% of the bill until we have paid $5,600.00 out-of-pocket. Medicaid nomally kicks in and pays the difference. However, this year Medicaid doesn't feel like Synagis is medically necessary. They feel like if you're over the age of 2, then it's not medically necessary - regardless of your health. So, that means that in order to get the shot, I would have to pay the full $2,400.00. Or, whatever hasn't been met on my deductable plus 10%. Someone passed on the following organization and said that they might be able to help. Well, I didn't have anything to lose, so I gave it a shot. Much to my surprise, we were approved for assistance. Kinnick will be able to get the Synagis shots again this year without any money out-of-pocket. So, I wanted to share this funding source with others that might benefit - I'm pretty sure this is nationwide.

PANF (Patient Access Network Foundation). This organization provides assistance in the form of reimbursement of out-of-pocket expenses for cetain medications covered by your insurance carrier - like synagis. You can do nearly all of the application on the phone - takes 5-10 minutes. They'll mail or fax it to you and your doctor's office (prescribing doctor) and you and your doctor can fax it back or mail it back. You have to provide proof of income - most recent tax forms and payroll stubs. If your income has changed since your last income tax, don't worry. You're allowed to provide that information. We don't qualify for anything that has income guidelines - except Minimum Alternative Tax on our Income Tax (Yippie). But, we did qualify for this. They are paying ALL of our out of pocket expenses in 2010 for synagis. Our pharmacy will collect the money directly from PANF, so we don't have to come up with the money first. It only takes about a week for the approval once they receive your forms and the doctor's copy. It's pretty quick if you use the fax.

I've heard some of you say that you're paying as much as $300 per shot this year. Please give them a call. You'll probably qualify.

1-866-316-PANF (7263). Just tell them that you want to complete an application for reimbursement for co-pay/deductable related to Synagis.

They also have a website www.PANfoundation. org - Check it out. They also help with other very expensive meds. Every little bit helps.

Wednesday, January 20, 2010

Technology Resource Solutions for People (TRSP)

Kat Stremel Thomas with the Deaf-Blind w/Cochlear implants project has once again found another way to help Carver. She has hooked us up with the OCCK ( This organization has a program "Technology Resource Solutions for People (TRSP)" that is designed to lend assistive technology to disabled children or adults to help them in their everyday lives. They are going to lend Carver a laptop computer, switch, and software that Carver can use to learn. They have fun games that will give Carver the opportunity to participate by use of a switch. This is something that Kinnick can use as well. This organization has a "library" (for lack of a better word) of assistive technology that can be borrowed. You can think of it as a "try it before you buy it" kind of deal. We can see what works or doesn't work. If we find something that really works, we can purchase our own copy instead of borrowing it.

Monday, January 18, 2010

January 18th, 2010

Carver is really starting to pick things up. We can now ask him if he wants to play "Itsy Bitsy Spider", tap his legs with both of our hands, and say, "Give me your hands", and he'll give us his hands to play "Itsy Bitsy Spider". He also does this to play "Pat-A-Cake". This weekend, he was having a horrible meal - wouldn't take a bite for nothing. He just ignored my husband. Finally, it dawned on my husband that his battery had died in his CI. My husband replaced the battery, and guess what? Carver ate every bite of his food in record time! He knows that "Bite" means that he's going to get a "Bite" of food. If he can't hear it, then how does he know to eat? He can't see it. It really feels like he's getting this "listening" thing. Oh, and here's a funny story... When I have him on my lap, I'll run my hands up his pant legs (exposing his legs). I say, "Oh Carver, you have such cute legs....look at these cute legs". He gets all embarrassed and puts his hand across his eyes and looks toward the floor to hide his face. It's so cute.

Thursday, January 14, 2010

January 14th, 2010

One of the Preemie moms on a group that I belong to was selling a "Creepster Crawler". I thought we would give it a try. She didn't ask much at all for it, so it was worth a shot. This little piece of equipment is supposed to help a child crawl.

He has made a few attempts at pulling himself up. However, he does prefer to just lay in it and rest his head on the floor.

We're going to try this a while - maybe he'll improve with time.

This thing is really pretty slick. Thank you Beth!

We tried to motivate him with a few of his toys.

I'm posting a couple more pictures of the platform swing. The others were a little small.

I think this shows the size of the swing a little better. The kids are LOVING the new swings. Kinnick stands at the gate and screams to go downstairs.

Tuesday, January 12, 2010

January 12th, 2010

The swing set is up and running....

It ended up taking up about 8'X7' of space. Yes, it looks like someone shot Carver in the background. He was just rolling around.

Here's a picture of Kinnick enjoying the net swing.

Here's a picture of Carver in a feeder seat that fits in the net swing.

This is a picture of the platform swing. It was taken on nurse Marci's cell phone and I can't figure out how to make it larger.

Here's another picture of the platform swing - taken from nurse Marci's cell phone. The platform swing is big enough for K&C to swing at the same time.

Sunday, January 10, 2010

January 10th, 2010

We received Kinnick and Carver's new swings. They got a platform swing and a net swing. Since it is so difficult for one person to take them outside, we are attempting to set the swing set frame up in the house. Yes, in the house. According to the website, the frame was supposed to be 91 inches tall. Well, most basements have a ceiling height of at least 8 feet high, right? Well, apparently 8 feet is "approximate". This is when you kick yourself for not getting the 10 ft ceilings. So, my poor husband had to cut 3 inches off each of the legs - galvanized steel legs. It's been quite the project. It also requires a space that is about 10 ft by 10 ft. Thank God we have a decent sized basement. I spent yesterday afternoon trying to move things around to make room. Hopefully we'll have everything set up later tonight. If so, I'll post pictures later this week.

Tuesday, January 5, 2010

January 5th, 2010

Carver had eye surgery today. He had some scar tissue blocking his left pupil. The scar tissue was preventing light from getting to the pupil. Dr. Varenhorst was able to do the procedure at Wesley Hospital - here in town. He said that there wasn't any hemorrhaging (which is good - this causes add'l scar tissue). He said that the retina is only attached in a few places around the edges. He also said that the macula is not attached. The macula gives central vision. So, we're not real sure what Carver is seeing at this point. Most likely just lights and shadows with his left eye. We'll see Dr. Trese's group in Royal Oak, MI on February 24th. This is the retinal specialist that has been following Kinnick and Carver.

Carver is still enjoying his new Pony walker. He does some right/left motions, but nothing consistent at this point. He's doing much better with head control. It seems like he is capable of holding his head up, but lacks the motivation to keep it up for very long.