Saturday, August 29, 2009

August 29th, 2009

We have so much going on right now. Then again, when don't we? What's going on?

I'm having a really hard time fighting with Cobra and the Social Security Administration. We have BCBS medical insurance through Cobra. It is set to end (18 mnths) at the end of November. There is however a clause that states that if any member of your household is disabled, you can extend the Cobra another 11 months. All you have to do is get a Disability Determination from the Social Security Administration. Sounds easy, right? Well, it's not. Kinnick and Carver have obvious disabilities that will easily qualify them as Disabled - Blindism, Deaf, and CP are 3 automatic disabilities - really not much to fight about with these. The records are pretty clear. However, the Social Security Administration will not give a person a Disability Determination UNLESS they are poverty level or worse. What!!?? Apparently, most programs will accept a Disability statement from a doctor. Except Cobra. I'm still checking to see what the IRS requires, but I'm pretty sure that they require the same statement to file the Disability on taxes. There is no way around this. I have screamed and yelled at both Cobra and the Social Security Administration. I even went to the media to get their attention, but no luck. I'm one voice and it isn't big enough. Per the Social Security Administration, they first see if you qualify based on income (SSI or SSDI qualifications), if you qualify based on income, then they will work up a Disability Determination. If you do not qualify based on income, it is dropped and you are denied a Disability Determination. Why, because they say that there is no point in spending the time and money coming up with a Determination when you're not entitled to any award money. But, yet the Federal Gov't requires this in order to qualify for some programs. It's just wrong! So, if any of you know a way around this, please share. I'm at my wits end.

What else are we up to?

Kinnick is sick, AGAIN. We seen her pulmanologist on Tuesday. She believes that Kinnick's fundo has torn out and that she is actually aspirating into her lungs. Makes sense to me... she goes from being just fine one minute to O2 dependent the next. It usually takes an antibiotic to clear her lungs. Plus she is able to throw up now, indicating that she's definitely able to get stuff up from her stomach. So, Kinnick is going in for a 24 hr stay at the hospital to have a scope done to look at her fundo and vocal cord paralysis. They're also going to swab her lungs to see if there is food residue in the lungs. While they are in there, they're going to put in a PH probe to see how bad she is refluxing - another way to prove the fundo isn't working. We're also scheduling to have swallow studies done on both kiddos to see how they are manipulating their food and swallowing it. This should also tell us if Kinnick is aspirating while eating. It doesn't end here. Carver is also scheduled for another sleep study to see how he's doing now that he's had his T&A's removed and he is tentatively scheduled to have his second CI surgery on September 30th. Then there is the wheel chair clinic. We are attending a wheel chair/seating clinic this week to get wheel chairs for Kinnick and Carver so they will be ready to start school in March. Yes, in Wichita, delayed children start school at age 3. This is also where all of their therapy will take place. It's going to be a huge adjustment. I'm not really sure how this is going to go.

Tuesday, August 25, 2009

August 25th, 2009

Carver really enjoyed getting to sleep in the big people bed. Can you tell by the big smile on his face? This was the night before his eye surgery.

Carver the day of surgery. He was in a pretty good mood considering he had an hour long surgery just a few hours earlier.

And then there's Kinnick a.k.a. Dora the explorer.... We keep hiding Hayden's fishing pole and somehow she keeps finding it.

One of her favorite places to play... in our bathroom. I have no idea what the obsession is with our bathroom. However, if you can't find her, you're sure to find her in the bathroom trying to turn the facet on at the tub.

Kinnick loves her books. She's always looking for someone to sit down and read her books - over and over again. She got big sister, Kirsten to stop and read a few.

Sunday, August 23, 2009

August 23rd, 2009

We arrived home around 8:00pm, Saturday night. What an exhausting trip. I must say that Kinnick and Carver did very well on the long drive. They both got a little frustrated at the end of each day, but other then that, they did really good. Well, except for the pooping. I've never seen so much poop! The car ride must have shaken their intestines clean. Not only did they poop in the car, but as soon as we arrived at the hotel in MI, Nurse Marci was changing Kinnick's diaper on the sofa and Kinnick pooped on the sofa. Oh, and the sofa doubled as one of our beds. We stay at Candlewood Suites, so we had everything that we needed to clean up the mess.

We arrived in MI, Tuesday evening around 8:00pm. David, Stacy, and Conner Larson met us at our room and we were able to have a short visit with them. I met the Larsons when Kinnick and Carver were in the NICU in Royal Oak. Conner was only 1 lb at the time and Kinnick and Carver were the largest babies in the NICU - at 9-10 lbs. Now, Conner out weighs both of them.

Kinnick and Carver's EUA's were scheduled for 9:30am, Wednesday morning. We had to be at the hospital at 7:30am. It was an early morning for us since that would be 6:30am Kansas time. Kinnick's eyes didn't show any change. No change for the better, and no change for the worse. We chose not to do anything at this time since she is doing so well with what she has. I had been worried about the size of Kinnick's left eye - it's smaller then her right eye. I thought that it quit growing. Well, come to find out, there is nothing wrong with the left eye. Instead, the right eye is larger due to increased pressure in the eye. The pressure is causing the eye to enlarge. Her pressure is at 30 and needs to be more like 20. This condition is known as Glaucoma. Kinnick will require eye drops to help relieve the pressure. The eye size won't go down, but the left eye will eventually catch up in size. Carver had to have the lens removed in his left eye. The cataract was bad, as expected. The retina still had spots that weren't attached, so unfortunately, we had to leave the oil in the eye. The cataract was really odd. Normally, the fluid sack that holds the lens is very dirty. However, Carver's fluid sack was clear. The cataract only developed on one side of the lens - the internal side. So, the doctor left the external side of the sack to act as a barrier (like saran wrap) to protect the cornea. Both Kinnick and Carver will need to have the pressure checked in their eyes in 3 months. We can have this done in Wichita, or return to MI. I'm thinking that we'll just have it checked in Wichita, but we'll see.

Carver did really good after surgery on Wednesday, so we headed to the Detroit zoo to meet a couple of other micro-preemie mom's that I've never met, but email and follow their blogs. We met Logan Wilson (26 wkr) and his mom, Rebecca. We met Jonathan (23 wkr) and his mom Laura and her husband. We also met up with the Larson's again. We had such a nice visit, I hated to leave. It was really nice to visit with other micro preemies and micro preemie parents.

We had a follow-up appt Thursday morning. Then later that evening, Stacy Larson invited us over for dinner (couldn't pass up a hot meal). We arrived at their home around 4pm and stayed until around 8:30pm. Again, we had a great time and appreciated their hospitality.

On the way to/from MI, we stopped to see my best friend, Suzette in Kansas City. She wasn't feeling well, but still let us stop to stretch and feed the kids. It was a nice visit, and she fed us a wonderful salad from First Watch. They have the best salads. We don't get to see each other much any more. It seems like we're both so busy with kids and traveling with Kinnick and Carver hasn't ever really been possible until now.

So, it was a nice trip, but I'm happy to be home. Tomorrow, I'll be up early going to the Social Security office to fight for a disability determination on Kinnick and Carver in order to extend my Cobra coverage another 11 months. Fun times for sure.

Saturday, August 15, 2009

August 15th, 2009

Resting up for the big trip....

So cute...

Did you know that I have SEVERAL big brothers? 4 to be exact, and 2 big sisters (counting Kinnick). This is me and my big brother, Hayden - he'll be 4 next month. Some day I'll be as big as him.

We hit the road first thing Monday morning. The drive is 15+ hours. Call us crazy! I think we'll have fun. It will be nice to get out of the house and go somewhere.

Wednesday, August 5, 2009

August, 5th, 2009

We've been busy preparing for our road trip to Royal Oak, MI for possible eye surgery for Kinnick and Carver. We're trying to plot out our plan. Right now, we're having a hard time finding something to do between Springfield, IL and Royal Oak, MI. We're hoping to find something in between - like the Joliet, IL area +/- an hour. If anyone has any ideas, please share.

The MRDD program is giving up to $2,500/per child again this year for children in the program to go towards equipment needs. We're trying to find a gait trainer or something that will allow Carver to be mobile upright. We're trying to get Kinnick some tumbleform pieces like a stair/slide/tunnel piece and a peanut ball for balance and exercise. We're also looking at some block pedals to add to her tricycle, so she is able to hold her feet on the pedals. Hopefully we'll be able to get approved again this year. It sure was a blessing last year. Last year, the program provided a gait trainer and rifton chair for Kinnick and a Tumbleforms stander and rifton chair for Carver. We use the equipment daily and are very happy to have these nice pieces.

Kinnick is really working on her words. Most start with "B", but she has now added "Wow". She looks like a little guppy when she tries to say "Wow".

Carver has new sounds all of the time and enjoys playtime more every day. Things are really starting to come together for him.

As far as the other kids go... they are all getting ready to start school. I always feel so overwhelmed this time of year. It doesn't help that I'm leaving on our trip the first day of school. I'm going to take the other children to school and then hit the road. My 19 year old daughter (Sophomore in college) is going to help get the kids to/from school while I'm gone. She's such a big help. My sister is once again coming to my rescue to help in the evenings until Bob gets home from work. Big families are nice, but boy is it a lot of work to coordinate everything.