Wednesday, August 06, 2008

It's August again, this year is flying by!

Where has this year gone? It is flying by so fast, my friend Yoli, whose sweet hubbie Juan is in Kuwait, reminds me that this year and the next will fly by because she is praying for it to go by quickly so Juan will be able to come home again. Please keep the Rodriguez family in your prayers as it is difficult for them to be separated for so long.

Want to hear some shocking news?? Gordy called to order some new Complete Pediatric, which is the formula we use for Luke when we go out of town or run out of our home made food, the price for a case of food tripled because their company was bought out by Nestle. Nestle thought that $40 a case is not enough money to charge parents for food that their children need to survive, instead Nestle knowing that it is a necessity for so many children has tripled the price to $153 a case. Our insurance has never paid a penny of this because they say it is not a medical necessity, even though Luke is incapable of surviving without it. A case is 24 cans and we would need 5 cans a day, which equals out to about 4 1/2 days of food. That means we would need about 5 cases a month at now $153 a case equals to be about $918 a month just for his food. Thankfully we are not dependent on this company to feed our child. Just a side note we did find another source for his food on Amazon for only $53 a case, we are hopeful that this site will work out, but won't know until his food arrives.

We've continued to have some busy weeks of appointments. Today I had to take Luke into his Gastronologist, you see the last time we saw him about 5 months ago he changed the size of his mickey button, which is where we hook up his food for feeding him. Anyway I knew when he changed the size of the button it was too big, but instead of calling right away I used all the old ones we had, but recently we ran out of his old ones and had to order a new one. When I put it in on Sunday I knew that it was too big and could get caught on things easily, so after calling the nurse to let her know she told me I would need to bring him in. Needless to say the nurse and Dr. both agreed to go back to his old size. Want to take a guess at how much the Dr. charges for changing a little button that only takes about 2 minutes? If you guess about $200 you would need to triple that and add another $25, yep $625 for a quick change. Unbelievable, since Gordy, myself and the girls have done this on numerous occasions, never having a bit of complication. It almost makes me want to vote for Medical reform in this wonderful country that I live in, that said I realize that other countries that have Government Medical programs are not all perfect, in fact I've heard that the old and handicapped often get less treatment then those that are young and healthy.

I'm thankful to God who provides all that we need to keep up with Luke's medical needs, but there are days that I get sad about all the money we spend on him, money that could be spent so many other places. Enough said.

Please keep us in your prayers as we go camping with Gordy's sister's family this weekend. Then on Sunday Amy and Natalie are going to our church high school camp as counselors, while I take Isaiah, Ezekiel, Luke and Lily, along with my parents and sister Cindy to go visit my sister Lori and her husband in Eastern WA for a few days. Gordy will stay at home to get caught up at work, he has been very busy there lately and hopefully find some time to put together our computer which crashed last week, of course the one with all our family photo's on it. I hope to put a little video showing Luke driving a little car at his OT appointment last week as soon as I learn how to put that up on his blog. Also some pictures of our completed tree house which is taller than the deck on our second story home, Gordy, Josh and the boys finished last Sunday afternoon.

Love in Christ,
Luke's Mommy Suzi

PS Would love to hear from you all, please leave us a comment and let us know what is new in your part of the world.

12 comments:

Anonymous said...

Hi Suzi!
It makes me feel sick about all the cost of his needs. Especially the food. People in your position should get special discounts. And that Doctor who whats to charge you all that money to replace a button! Isnt that HIS fault for putting in the wrong size in the first place!
Anyway, we are good here in California. It has been a hot busy summer. But the kids still want to get out more..Maybe we will go to the zoo next week.
Keep up the good work! You are a super mom!
Cindy.

Anonymous said...

Wow I can not believe those prices. UGH.....

Praying for all of you. For your time away. :) YAY....

We are organizing and planning... plan to start school next week. I have been cleaning out and weeding things out. Looking at Heart of Dakota for the boys have you ever heard of it? I want to do them together. Do you do Zeke and Isaiah together?

Have a great time~
blessings,
Teena

brappel8 said...

Hi Suzi! Been thinking about you. I understand the cost of all that stuff. I don't even want to know what Elijah's ICU stays cost. But God is good and always provides!
Hannah was here from Puerto Rico for 6 weeks and left this morning. We had a great visit. Now I am concentrating on school starting. That is always fun.
Happy Anniversary! Wow! 25 years. May
God bless you with another 25!
Your friend is Christ,
Lori Appel

Jodi Pesicka said...

Hi Suzi,
It sounds like things are going well for your family despite the outrageous prices we get charged. Justine's formula Peptamin is made by nestle too and it is over 1000 a month but our insurance pays for it. It gets billed through the prescriptions and we pay $30 a month. I would talk to someone about that. Jodi

dr_bristow said...

It is pretty unbelieveable how much things cost...
How was the camping trip?
I've been thinking of you all and praying for you a lot lately!
Love,
Alane

Anonymous said...

Just stopping by.... posted a prayer request for baby Zoe on my blog and mentioned Luke. I hope that is ok. :)

http://babysimpson.wordpress.com

I am doing better. I did order the Heart of Dakota for the boys. I like that it is everything laid out. I do not think I would of went this path years ago but with the olders and youngers and interuptions and crisis' THIS is working now. I am thankful God gives us different things at different stages of our life.

I think of you often and do not understand HOW I can be YOUR hero???? YOU without a doubt ARE MINE. :) HUGS

blessings & love,
Teena

Anonymous said...

Hi Sue,

Just checking in to see how things are going. Are you back from your camping trip? You were greatly missed at MNO - by me! Hope we can get together again soon. Happy anniversary!
Mary said hi to Luke and his family when I pulled up the blog earlier!

Sue

Anonymous said...

haven't seen an update lately... wondering about you. How are you? Praying for Luke. Praying God gives you peace and comfort... I know this month is hard for you. HUGS.

Praying all is well..... let us hear from you soon!
blessings,
Teena

Anonymous said...

Hey Suzi!
Yes, it is time for a new update! The readers are getting restless!
Cindy.

dr_bristow said...

Hey Sue,
Just stopping by to say hi! I'm praying for Lukie and hope you all are doing well!
Alane

Anonymous said...

Are you ok? Haven't heard from you.... its been a month! Isn't this the longest since you have posted in a LONG time....

where is my friend?

blessings,
Teena

Anonymous said...

Hey Suzi!
Its September and we are all waiting for an update! :)
How is everything?
Cindy.