Friday, September 19, 2014

Great NEWS!!!

Vivian is getting 90% of her meals from blenderized foods. (still through the g-tube)
We only have a handful of pediasure bottles left. NO MORE EXPENSIVE FORMULA!!!!!

We have some big new goals now.
The first goal is to get Vivian's weight up to 29 pounds by Christmas. As soon as we get her weight up, the doctor will refer us to a top-notch feeding clinic. The Best feeding clinics are in Seattle or Los Altos. There is also one at Baylor. These feeding clinics last 3-6 weeks. Vivian would go daily and have a team of doctors watching over her. I believe this will be the most effective way to get her off the tube. Unfortunely, I doubt the insurance company will pay for much of it or any of it. They didn't care about paying for her formula. Why would they care if she eats by mouth? I am trying to find out what they will cover  but expect some more fundraising events. I am so thankful for the amount of support we have had with our garage sales, our petition, and our FB page.

Thank you for sending love and prayers!!!

Tuesday, June 3, 2014

Update- The garage sale was a big hit! THANK YOU for all of your help. Every penny we made was because of you. We will have another sale in July so please contact me at feedvivian@yahoo.com if you would like to help.

Many people have asked about the formula. Vivian uses Pediasure Peptide 1.5 Vanilla. It is much cheaper to buy from amazon or walmart.com. It's about $200 plus shipping a case. A case last about 4-5 days.

If you are new to this page please read our story below. Thank you for all of your love and prayers. This situation has been so stressful but it has also been a humbling experience.

Monday, March 17, 2014

Our Story

Vivian was born 11 weeks early. She was born 2lb 2 oz and spent 120 days in the NICU. Vivian was born with bilateral club feet and hip dyplasia. Vivian never learned how to eat so she had a fundoplication and g-tube surgery. She gets all of her nutrition through a mic-key button.

 The medical supply store sends us a monthly bill that I never open because I have an automatic payment sent to them. When I called to place my March order the lady at the supply store wouldn't let me order because my balance was high. I told her I make a monthly payment. She responded "do you know your bill is over $8000?" I couldn't even think straight. In order for me to place my order I had to make a larger payment so we could at least get her milk and other supplies for March ordered. The question is how on earth can we afford her milk? Her milk order alone costs $2000 a month. Private insurance does not pay a penny for her milk.

What was confusing to me was how could the insurance company all of a sudden decide not to pay for g-tube feeding s. I looked over all of our insurance statements and found out that our insurance has never paid for her milk. It has never been a covered cost. The medical supply company had made a mistake. Vivian was automatically covered under medicaid for the first year of her life because of her birth weight. When she turned one she lost the coverage because of our income. (For a family of four you have to make less than 32000 to qualify) Medicaid had paid for her milk until her first birthday. Apparently the medical supply store thought the milk would be covered by the insurance company or medicaid. I didn't ask but I assume they ate the cost because they are only charging me for four months of formula and not 18 months. (Thank God!)

 My family is now in a panic worrying about how we are going to feed Vivian. We have gone over several scenarios. The one I have chosen to start with is to ask for help. I am not normally one to ask for help but my choices are limited. Vivian's milk would be my whole paycheck. If Vivian were on medicaid not only would her milk be paid for she would get 4 times the amount of therapy she gets with private insurance. If private insurance would be more serious about covering speech therapy she might be able to learn how to eat more. (insurance covers 20 times a year per therapy, doesn't matter her condition or the fact that several doctors have written prescriptions for therapy) Medicaid covers l-3 times a week. Vivian cannot walk. She has had several surgeries which left her in casts. Every time she got out of a Spica cast we had to start from scratch with muscle growth. Her pediatric orthopedic surgeon wrote a prescription for a stander but insurance denied it. We had two doctors appeal the insurance company and once again insurance denied it. My therapist said that medicaid would have covered any therapeutic device a doctor prescribed. A few of my friends have suggested medicaid, but that would mean giving up teaching :( I figured I would give fundraising a shot first.

My goal is to raise enough money to cover Vivian's medical expenses. Insurance does not cover nutritionists but I really need one to help figure out what kind of blended diets we can use to replace the high calorie (high priced) formula. Vivian's stomach cannot tolerate large quantities of food so it will take time for her to adjust to a blended diet.

Vitalstim therapy is another option I would like to pursue to help Vivian build muscles in her throat so she will have an easier time swallowing. VitalStim is an external electric stimulation therapy treatment for dysphagia. Three times a week for 6-8 weeks is recommended to get the best results. We were able to try this last September thanks to a close friend who picked up the bill. Things were going great until Vivi broke her leg. We lost all eating progress during her recovery. We payed full price for the therapy which was around $2000. If this is what is needed to get her off of Mic-key feeds then it is worth the investment.

Vivian is the most grateful little girl you could ever meet. She is so sweet to everyone (unless she has skipped a nap:) It breaks my heart to see her so physically delayed because she is not getting the medical care she needs and deserves. I have really struggled with this whole situation.

 If you would like to donate please use the paypal donation buttons I have on the sidebar or down below. If you would like to donate items for the garage sale in July please email me at feedvivian@yahoo.com. Thanks for your support!!!!

Vivian's full story is on our old blog at www.preemievivian.com . Thanks for reading our story.