I have been LITERALLY absent from blogging, and to be honest, I don't think I will be doing much of it anymore. Life has been nonstop in the fast lane since I moved back to Bama. I went to Mexico in July, came home and my sister got sick.
The thing is, she was diagnosed with Nephrotic Syndrome when she was 2 years old around (2001-2002). She was treated with oral chemo, steroids, and other meds and eventually she went into remission.
Before swollen face:
Swollen face:
Her doctor in Birmingham started her back on her steroids to try and get it back under control. Her swelling would not come down.
She was admitted to the Children's Hospital in Birmingham, Alabama, for 4 days and 3 nights to pull the extra fluid off of her body, and she lost 15 lbs in 4 days of nothing but water weight! We went home thinking it was over for the time being.
We were released from the hospital on that Friday... she started her first day of Junior High (7th Grade) that Monday. Went to school Monday, Tuesday, checked in late Wednesday because she started swelling again, went all day on Thursday and stayed out Friday because she started throwing up. That Saturday, she was still throwing up, so we took her to the local ER. They gave her some meds and sent us home because all of her lab work and tests looked fine. On Sunday evening she was STILL throwing up, so we packed a suitcase(with anticipation of being admitted to the hospital again)and headed on down to Birmingham (an hour and a half away from my house.)
That is where we have been since August 26. 3 and a half weeks in the hospital. My sister is currently having to do dialysis 3 days a week because she is in kidney failure. At 12 years old. She is still throwing up every day, and because of this, she also has a feeding tube. The Doctors think her kidneys shut down as a result of dehydration from throwing up so much, but in all honesty, they can't say for sure what happened. They are positive her kidneys will "wake up" and being working on their own. That is what we are hoping for. We are giving them 2 more months to start working again before we begin to think of more permanent and long term treatment options such as a permanent cath for dialysis and transplant options. As of now, those things aren't even on the table as options. If and ONLY if we get to three months and she hasn't responded, will we even begin to discuss more permanent treatment options. We have NO idea how long we will be in the hospital. They say once we get the throwing up part under control a little better, we can go home and come back basically 6 days a week for labs/dialysis, plus continue with the feeding through the tube at home so, even after discharge we will have to stay local in order for her to receive the treatment she needs. We have a Facebook page called Prayers for Lexus Helton where my mother and I regularly update her progress or lack of several times a day or as much as we can. I would love for you all to go "like" her page to keep up to date on her condition and to see pictures and tidbits of information LIKE the first official fundraiser we are doing in her benefit! We are selling GREEN for Kidney Disease Awareness bracelets that look like this:
for $8.50 each! That price INCLUDES having the bracelet shipped right to your front doorstep! This is to help off-set the prices for the equipment she will need for at home care when we get discharged, because our insurance pays 0%! Anyways, if you would like to buy one, I have a Paypal account (breannarains@gmail.com) for easy payment by Debit card or you can get in touch with me via breannarains@gmail.com to work out another form of payment that is more convenient for you!
If you pay through PayPal, in the designated message place, please include your shipping address so I can mail yours to you when we receive them. We have to receive 25 orders before we can get them for that price and the DEADLINE is September 30! There is more info on the Facebook page!
I really hope, if nothing else, you will go "like" the Facebook page and if you pray, PLEASE pray for my little sister! Thank you so much!