Wednesday, March 2, 2011

You guys don't know how much your comments mean to me! You gave me encouragement, and you also gave me ideas!

I spent a while on the phone today talking to a nurse through our health insurance company, learning about benefits I didn't even know we had. She even offered to make some calls for me and get the ball rolling on a referral for a dietician and a GI specialist. I am not the most assertive and persistent person in the world and so this was a welcome gesture. Our family has always been so healthy, even the children with Down Syndrome...I haven't really known where to begin searching for the services we need for Zoya. Nurse Debbie, who works for United Healthcare, is super friendly, extremely knowledgeable, and returns phone calls promptly. I think I might have accidentally told her I loved her today. :) By the end of the day, Debbie had found a dietician in network, spoke to her personally, and called to get my permission to pursue the referral with our pediatrician tomorrow. I think we are finally getting somewhere.

Meanwhile, after my long post last night, I went in to find vomit all over Zoya's bed this morning. I think she puked the entire thing up. Is it sad that as I'm cleaning it up, I'm calculating how many dollars, as well as calories, were wasted?  We have decreased her feedings a little bit for now until we can see a dietician/GI to determine what is the problem.

Having 90% of my time, resources, and energy going to one child has obviously had an impact on the rest of the family. Mainly my homeschoolers. After all these calls must happen during business hours, which are also school hours. I wonder how many days these last few weeks our assignments/lessons have been things like Basic Laundry Techniques 101,  Nutrition 101 (i.e. how to cram the most calories into the smallest space), 7th grade Math Problems: "If a child needs to consume 237ml/ can, times four cans, over a 12 hour period, how many ml will she need to consume per hour?".....Etc.

I am confident there are good changes coming for Zoya. I can't wait to write a good report about her soon!

13 comments:

Stephanie @ Ralphcrew said...

Oh dear, what you've been going through breaks my heart. I'm so glad that you have been encouraged and that you are finally getting some assistance!

KT said...

Wow, that is some rough stuff :-( I was thinking a month back or so, while fighting for two full weeks for a basic Neuropsych eval, that I really had no idea what it meant to 'Be your childs advocate' until it came time to do it. I thought I knew what it meant, but I didnt. And I have only a fraction of the medical battles you have. Hang in there my friend! I really wish I could come over and help out during the day, wish we were neighbors! You are an amazing Mama!!!!!!

ErinL said...

I'm thrilled to hear that someone listened to you and you are getting some action! We love you all. If there is every anything we can do for you don't hesitate to ask!

Anonymous said...

Wow, I can't even imagine going thru what you have to to get results. It's pretty amazing that so many professionals drop the ball, so we have to be so persistant. You're not alone; God is on your side! He'll help you get the answers you need. Your home-schoolers are learning basic skills that rarely come through regular classrooms. Good learning experiences!

Love you,
Aunt Sharon

Anonymous said...

Wow, I can't even imagine going thru what you have to to get results. It's pretty amazing that so many professionals drop the ball, so we have to be so persistant. You're not alone; God is on your side! He'll help you get the answers you need. Your home-schoolers are learning basic skills that rarely come through regular classrooms. Good learning experiences!

Love you,
Aunt Sharon

Anonymous said...

Glad you have some help!!! Soon she'll be gaining that weight!!! Soon!

Jan

Allison said...

I used to do homecare(I'm a nurse) and I know some of the smaller feeding pumps come with little backpacks for children that need to be on continuous feeds during the day so they can be mobile. Wonder if continuous would help her not to vomit, or at least help her get used to having food in her stomach for prolonged periods and decrease her vomiting? Just a thought.....glad you got help from the nurse at your insurance carrier!! The ins and outs of all of that can be insane!

kdliberty said...

I am glad you finally got the right person at the insurance company. I think Pedisure is absolutely the wrong formula for her. It is just to hard to digest. They make formula for children that is easier to digest. The 2 most common are Elecare and Vital Jr. However, I am sure there are others. When you get your appointment with the Dietician ask her about switching her. BTW, you are paying way to much for formula. I can buy at the local hospital and ship it for less then you are paying!

Gay Lyn Byrd said...

popsiclecenter.org is a website that has information for parents of kid that are having feeding difficulties. They would be a good group to get some good feedback from. Best wishes!

Amy said...

Charissa-
While we don't have the medical challenges you do... we also have an FAS kiddo... and eating has ALWAYS been a challenge! We have had to push to gain weight on him for TEN years... and it is a daily struggle... refuses to eat any proteins unless basically forced... and it will then take him forever to finish...
Poor little Zoya... I know that you are doing the best you can for her!

I know that you have insurance, but have you tried to apply for SSI for her to help cover some of the costs? While it takes a long time to get approved, it might be able to help a bit with the financial end of things!

Bless you and yours!
Amy

JennyH said...

I feel for you, really. Trying to deal with insurance and doctors and all that fun stuff is SO time consuming and frustrating. And I don't have a child with any major health issues that requires so much care. Glad you found one helpful person. Hoping it all gets better and worked out.

Qadoshyah said...

Wow, sounds like you all, especially little Zoya are having a rough time. Hopefully you guys will get answers soon & be on the road to recovery :).

Could the vomiting have anything to do with reflux? Or a milk intolerance (lactose)? I can't remember if PediaSure is dairy based or not. But, it may be something to look into. Although, it certainly complicates things because of the other medications she's on.

Hope Harder said...

Just read your post tonight while at my home health job. We have 4 kids who are tube fed (all adopted from th US foster system.) They have medicaid and get their pediasure paid for through that. Right now I am way behind in getting it all used and would love to donate like 200 cans at least. Got to figure out how to get it to you. We can't be to far away surely since we live is south west MO (Aurora) Let me know if you want it. My email is harderhope@yahoo.com