We have been back and forth at C.S. Mott's Childrens hospital with my granddaughter. At 6 weeks old she was not gaining weight rapidly enough, extensive testing helped to discover she had been born with no gall bladder and no ducts (that release the bile from the liver), she was in the beginning stage of liver failure from this. I had NEVER heard of this before! She had a biopsy and more test, then what they call the KASI surgery (creates ducts using her own intestine). So much for such a small baby girl.
She was released from the hospital and then re-admitted a week later. She is unable to feed on her own so they have placed a ng tube for feeding and sent her home with it. Which seems to be helping. She is the happiest little girl for having been through so much this past month. And we know that she will for sure have to have a liver transplant, just there is no way to know at what age. For now we are having to drive to the hospital one a week for check ups at the liver dr and surgeon which is a 45 min drive one way. And fighting to get help from SSI since my daughter is not able to work since she has to take car of her 24/7. I work but cannot help with everything (money, driving and bills) It just has me feeling very frustrated and depressed.
You think that there would be more support (and not meaning just financial) for parents of special need children. My daughter and granddaughter are both fighting so hard, and I just feel like I am falling apart :(
1|1|How much? more inside|Pattyw|atrade4u@gmail.com|14:39:21|03/20/2015|
So sorry to hear all this. I would think your daughter can apply for SSI for the baby. My daughter was born premature and they placed her on SSI for low birth weight. She didn't have any other health issues so I would think (and hope) that your granddaughter can get SSI.
ALso, in our state, if a baby has any health issues - we can apply for what is called TEFRA medicaid - this is medicaid for the baby based on the baby's need and they do not include the parents income because this is based on the baby's NEEDS. Please look into that as your state may have that.
I hope your daughter and grand daughter get the help they deserve.
Patty 2|2|As a mom to 2 special needs girls I can tell you ....|Skaytes|skaytez@gmail.com|15:39:27|03/20/2015|
She is eligible for SSI. The parents ..or legal caregivers..income will be taken in and considered in figuring how much SSI the child can receive. Once the child reaches 18 the child will not need to have parents/caregivers income included. Get SSI..also apply for Medicaid for child as well to pay for the child's bills. Once she has Medicaid, then apply for Medicaid Waiver services. This will give you lots of other options to receive other medical needs and such for the child.
I will also add Medicaid (I am in Indiana) does pay for diapers, washable changing pads and up to 5 boxes of gloves per month (gloves only for unpaid caregivers ..not for nurses, aids as the home health agency has to supply them to their clients for their employees)
If you have to travel alot for overnight stays at hospitals for procedures or operations, call around to motels in the areas they often will offer deep discounts to families to ease the financial burden of doing such a thing.
Call your local Shriners and let them know your situation. Getting the child help at a Shriner Hospital will cost you ZERO money there and they can arrange transportation to take you there and back at no cost as well. Ronald Mcdonald houses are also a good place to stay for very little if there are any near any hospital you may need to stay with in the future.
If you have any questions..I don't know what state you are in...but please feel free to email me and will do all I can to help you with getting info etc you need. God bless you all! ((HUGS)))
3|1|I would expect that the hospital would have social workers to help address your needs. If nobody has come to you, then please, please go looking for help|suezz|clearys@comcast.net|15:58:33|03/20/2015|
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4|2|I am so VERY sorry to hear this about your family!|cashcoll|trhess@cox.net|16:36:18|03/20/2015|
PLEASE do what Skaytes/Kathy suggested -- if anyone knows the system it's her. She knows it inside and out! She make sure her girls get what they need.
She is a good person to talk to as well.
I will keep you ALL in my prayers!
HUGS!
Teresa
Have a Great Day!
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GO HOGS GO!!
Woooooooooo, Pig! Sooiee!
5|3|thank you all|kam726|shy1inmi@yahoo.com|17:28:43|03/20/2015|
For the information. The social worker at the hospital helped her get the info for SSI. She applied but it will take 3-4 months to hear from them, she said. The baby (Hailey) does have medicaid and the social worker submitted for another insurance, not sure on the name. Never heard of them covering diapers? That would help. Gas is the biggest issue, been trying to keep the car full, never know when we have to run. Has anyone ever heard of biliary artresia? That is her diagnosis. 6|4|To speed up the process for her SSI..see inside..|Skaytes|skaytez@gmail.com|17:37:31|03/20/2015|
As soon as you can, contact your local congressman and explain the problem and that she needs to get the SSI right away due to financial difficulties. They DO have the ability to get things like this pushed thru a LOT faster! Again, find out who knows ..or maybe you know..someone that is a Shriner and get the child on board to go to Shriners Hospital closest to you. They do all kinds of things there not just burns etc. My multiply handicapped daughter went to Shriners Hospital for a number of years. Again..it's free and they will have someone take you there and back at no charge and no charge for their services, or any medical including operations done there. Doctors donate their time and services to help the children as well as Shriners their selves to drive you if you need them to. 7|5|thank you |kam726|shy1inmi@yahoo.com|13:35:51|03/24/2015|
I appreciate all the advice, thoughts and prayers. I will look into the congressman, I know alot I am not able to handle as my daughter is the parent. She is 22 and a single mom. I just try to help out as much as possible. I do not know how they expect them to live with no income ( for the 3-6 months it takes to hear from SSI) But we are trying to bring in any extra income we can. We just took back a load of scrap metal yesterday ( boy prices have dropped drastically here in Michigan)
I looked up Shriners but they are in Chicago. Also I am very hesitant about switching her from UofM Mott's (they saved her life at 6 weeks old) and are one of the top in the country who specialize in the surgery she had done. Only 1 in every 10,000 babies are born with her condition, and the hospital I work for ( I work on Pediatrics for a local hospital as a clerk) the doctors on staff there said she is in one of the best places, since they are so much further advanced. With having to go once a week to the liver doctor, then seeing the pediatrician and the surgeon seperately, I just feel it is safer to keep her going there.
We have no clue when she will need the liver transplant, that is why she has to go so often to have her labs drawn and weight check. At birth she was 5 lbs 13 oz, right now at 3 months old she weighs 8 lbs 11 oz. So she struggles with the weight gain. But since being on the tube feeds she has improved some, so we are trying to stay positive.
Once again thank you for all the kind words!
kam726
kris