Asking for prayers

We are applying for Katie Beckett Medicaid for Evelyn again. We were denied the other times. She wasn't "disabled" enough. We are sort of worried as developmentally she was much worse back then and was still denied. However back then she only had her tube for "sensory issues" and it was short term. A few years later we know she has physical issues that will never get better and will only get worse and it will be for life. So I hope that helps our case.

I just got done filling out the massive pile o paperwork. Digging up records in her "box" in the basement. Finding the names and #'s of every doc she's ever seen. Documenting every tiny little thing about her life. Then I called for her home visit and they asked what day is good. Uhhh did I just call the State? And they are ready ASAP? I thought it would be a few months lol. But it's next Thursday. They come and meet Evelyn, talk to us, go over paperwork, and answer questions

Please pray your little hearts out that she is approved. This is our last attempt at getting formula covered. Otherwise we are on our own for life. It would also pay for feeding therapy privately, OT privately etc. Since the hospital stopped her feeding therapy, if we want it we have to pay for it ourselves. And then it helps with the little things like prescriptions (1.00 vs 25.00), copays (0 vs 25 or 50), dentist visits and deductibles ($2000).

Some good news though! Our formula from the Oley Foundation was running out fast so I was praying and praying that somehow God would find a way to help us afford more. The next day my friend Melissa who has a 5 year old tube fed little girl, Emily, wrote to me saying she didn't want to tell me until she was sure, but that it was official that she would have 3 cases extra each month of Emily's formula. And it's the good stuff! She was going to send it to us just for shipping costs which is like $17 per case. I was so relieved. God sent someone in just the nick of time. So then I prayed to find a way to pay for the rest. And the very next day I found a new Facebook friend, Jodi, who has a 2 1/2 year old little tube fed girl named Allie. I posted on a surplus exchange page that I was looking for surplus formula. She wrote to me saying she had 31 (yes THIRTY ONE) cases of formula she would give me for shipping. Turns out, in the entire US, I found someone who lived in Wausau. So I don't even have to pay shipping! 31 cases + 3 cases per month from Melissa will last us about 7-8 months. I was floored. I sobbed. I admit it :) This is such a huge burden lifted off us. God is so good. He answers prayers by sending people into our lives at just the right time.

The other thing I got from these moms, besides life saving food for my daughter, was friendship. Friendship I could never find anywhere else. These ladies have been there done that. They are an invaluable resource. They know how you feel. They know the highs and lows and frustrations. They answer every annoying question you have. They are there for you. To not feel alone is amazing. And I am beyond excited for Evelyn to meet some fellow "tubies" so she doesn't feel so alone. I love these ladies like family and I am so grateful to them

Thankfully I get to meet Melissa in real life (hopefully!) in April. Evelyn will hopefully be attending a tube feeding weekend camp in KY in April. Melissa intends to send her daughter as well. It is at the Center for Courageous Kids. It is 100% free to families that is run off of donations. There is stuff for the whole family, the tube fed child, the siblings etc. There is swimming, rock climbing, horseback riding etc. But most of all there are people that know exactly how you feel. I am so so excited!

So in conclusion, I just want to ask for prayers. Prayers that Evelyn will be approved for Medicaid and prayers she can attend camp in KY and meet other kids just like her