June 29th, 2008

Kinnick's G-tube has been leak free at night for the past couple of weeks.  She has had minimal leaking during the day.  Most of the leaking during the day is due to stress when someone new is in the home.  This can be a Rainbow's employee (service provider for PT, OT, VT, etc.), a new nurse, or a friend or family member.  She's learned to relieve herself around the stoma site when her stomach is too full.  She has such a small tummy.  We have a hard time getting any more then 4 oz of food and 2 oz of juice per feed.  If she gets too full, she just pushes the food out around the stoma (G-tube entrance).  The last couple of days I've increased her to 5 oz of food and 2 oz of juice per feed.  She's been handling it pretty good.  She still gets 16 oz of formula at night.  The goal is to get all of the calories and fluids moved to days by mouth so we can get rid of the G-tube.  It's a slow process, but we are well on our way.  She needs 720 calories per day.  We have to count every single calorie that goes into her.  We're finally hitting the full 720 calories.  We were told to expect a weight loss when converting to baby food.  Well, she did lose weight.  She is now 15 lb 14.5 oz.  She's such a tiny little thing.  Once we are able to increase her feeds, I think her weight will increase.  We even add 1 tsp of butter to her vegetables 1 x per day.  This adds 50 calories and tastes good.  Since we added the butter, we've noticed a weight increase.  I'm not sure how much she actually lost, but we can tell that she's started gaining some weight back.

Carver still doesn't like eating.  We're lucky to get 3 bites in per feed and he just lets the juice run back out of his mouth.  He's gaining like a champ.  His last weight was 19 lbs even.  We're still shooting for 20 lbs by next month so he can get his new ears.  Hopefully his eating will improve with his new ears.  I also think the Fundo is bothering him.   It takes about 6 months for the Fundo and G-tube to heal.  Hopefully we'll see a change in September.  This will mark 6 months from the date he got the Fundo and G-tube.

We're really starting to get bored staying in the house all of the time.  We're going to start physical therapy in the pool in July.  We're taking a class with Rainbows at the YMCA and our Rainbows PT is going to start doing our PT at our neighborhood pool.  We're excited about getting out and doing something new.  I bought the cutest matching swimsuits for the kiddos.  I'll post a picture of them wearing their new suits and matching hats.

Kinnick and Carver are both still on 1/8 lt of oxygen.  I tried to reduce Kinnick to 1/16 lt, but she didn't seem to handle it.  Her heart rate went up slightly.   I'm going to wait a couple more weeks and try again.  Carver isn't ready for a change, yet.  He still has a lot of strange de-sats while sleeping.  I'm supposed to talk to the pulmonologist about this at our next visit.

June 28th, 2008

Insurance update:

I worked for the same company for almost 20 years.  During that time, I had really good health insurance.  The health insurance was privately funded and was very inexpensive for employees.  Since it was so good and affordable, I always covered the entire family (9 people).   When we had Kinnick and Carver, we were given Medicaid for the first year of life.  We qualified due to their birth weight.  Medicaid is typically income based and we did not meet the low income guidelines, but qualified for 1 year based on the babies birth weight.  Medicaid is always a secondary health insurance if you have other health insurance.  So, my privately funded health insurance was always hit before the bill went to medicaid.  Kinnick and Carver's medical bills were in the 2 million dollar range (per child) the first year of life.  Luckily about 1/2 of the medical bills get written off when you use a preferred provider.   After write offs, we have exceeded 1 million dollars per child.  We have a 2 million dollar maximum coverage.  After you hit 2 million dollars, the child or individual is dropped from the insurance.  This stinks because eventually we will lose medicaid and our good insurance will no longer cover Kinnick and Carver.  In January of this year, we added all of the family to my husband's health insurance.  It costs a lot more then my insurance and doesn't have as good of coverage.  This added about $500/month to our bills.  This was necessary in case we max out Kinnick and Carver's maximum coverage causing us to lose their privately funded insurance and we lose medicaid.  When I quit my job, we chose to keep my health insurance under Cobra.  This costs an additional $1,000/month.  I'm being told that we will continue to qualify for medicaid based on the babies technology needs.  This is effective in August with the new TA waiver.  However, we will have to pay a family premium for the insurance.  I'm not sure how much this will end up costing.  I'm told there is a sliding scale that is based on income.  So, this will add an add'l monthly cost for health insurance.  Anyway.... the GOOD news is that I've been working on getting the State to help me pay for my Cobra insurance.  I found out this week that the State is going to start paying my Cobra insurance premiums.  In fact, the state is going to back pay me for any premiums that I already paid.  Thank God, once again.  This will help us afford the new medicaid premiums that we'll have to start paying.  

My next job is to fight for disability income for the babies based on their disabilities and their income.  They are permanently disabled (Kinnick is blind and Carver is deaf), but I'm being told they do not qualify for income assistance because they are basing their income on the household income and not on the fact that Kinnick and Carver do not have an income.  It is important to get this assistance because at some point, I could lose the medicaid and nursing assistance.  Their disabilities will be very costly long term and the assistance would ease the pain of the significant bills associated and may allow me to continue to stay home caring for them.  I have an Aunt that has fought this battle for one of her children and she has agreed to help me.  Thank you Aunt Kathy!  As always, I will share any tips that I get for any of you that may need the same assistance.

June 27th, 2008

Thank you Grandpa Woolley and Pat for the cute Hawkeye outfits!

June 25th, 2008

I just want to take a minute to tell you how blessed we are to have such awesome help.  We (along with many of you) prayed for a really good nurse.  Well, God blessed us with more then we could ever ask for.  In January, a new nurse was sent to our home.  I was a little nervous because this was her first Home Health case.  She hadn't ever worked with a G-tube, babies with fluctuating oxygen needs, vision impairment, hearing impairment, feed problems, or even giving breathing treatments.  She was shown the ropes the first day.  She didn't really participate - instead she was watching and learning.  I wasn't sure she was going to be the right nurse for us.  We had so many bad nurses.  On her second day, she came in and did everything by herself.  She has come to be a dream come true for us.  She is fabulous!  The babies love her, we love her, my other kids love her, she treats my babies as she would treat her own.  I don't know what we'll do if we ever lose her.  Thank you Nurse Marci for spending your days with our babies.  We love you and recognize your contributions!

June 23rd, 2008

Kinnick hanging out on the deck.

Carver unhappy with the character that he found in his chair.

Graduation Party Pics

Cousin Nicholas (left) and Big Brother Hayden (right) having a serious conversation.

Nicholas and Hayden smiling for the camera.

Mom's best friend Suzette.

Mom's Aunt Kathy (married to Mom's Dad's Brother, Gary).

Big Brother Hayden enjoying water fun in the yard.

Cousin Jessica enjoying water fun in the yard.

Cousin Jessica having more fun in the water.

Uncle Bill having a talk with Carver.  This can't be good.

Mom's Dad Alan (bottom left), Uncle Gary - Alan's Brother (bottom right), Aunt Pat - Alan's Sister (top).

Grandma Ashland (Mom's Mom) and Gregory.

Cousin Terri (Kathy and Gary's daughter) and Kirsten.

Daddy enjoying a break on the deck.

June 22nd, 2008

The graduates - Kirsten graduated from Bishop Carroll Catholic High School and Gregory graduated 8th grade from St. Francis of Assissi Catholic Grade School.

We celebrated with many family members today.  We had a great time.  I'll post the pictures I have.  Sorry that I missed so many.  I kept busy with kiddos and making sure everyone had what they needed.