MEET WYNTER:
„ Wynter has 2 brothers, she likes to play dress up, babies, likes to paint her nails and sing, dance & play drums to her favorite music “Fresh beat band”.. Wynter loves to go to the beach and swim, skateboard, ride horses and she really wants to learn to ride a bike. She cries when she gets her feelings hurt and is strong willed and very independent. Wynter hates to have her long hair brushed or to take her medicine…but she loves unconditionally and with out prejudice. Wynter also has Down syndrome.
„ Down Syndrome only makes up .01% of her DNA . She gets her genes and WHO she is from her family just like you and me. She can do & learn EVERYTHING that you & I can, it will just take her a little bit longer, and she may need some extra visual supports to help her learn. She reaches puberty at the same age and is very sensitive/observant to others feelings as well as her own.
„ Wynter has a body that has some physical challenges including a compromised immune system; a train wreck of a metabolic system; Celiac’s disease some other dietary needs and restrictions that can be costly and she is worth every bit of it and more!
„ So far, Wynter has over 20 doctors/ specialists and counting. Last year alone, she had over 200 doctor appointments. She is enrolled in state programs that help with some of these areas but at the cost of having a lot of ongoing, time-consuming paperwork. Not all of Wynter’s beneficial therapies are covered by insurance, nor are her nutritional supplements despite her significant vitamin / mineral deficiencies. Wynter does not feel pain the same way & does not communicate well when she is hurting in the inside. So you have to read her body language & behavior and constantly be checking her all over, knowing what to keep a look out for, and take even the small things and play detective with them…Constantly be her voice and advocate.
„ Wynter has very low tone and loose ligaments in her body. Imagine that you wrapped your fingers with gauze, and then put on snow gloves, long Jon’s and a snowsuit, then fill your mouth with cotton balls. Also imagine that your body was connected by rubber bands, but not tight rubber bands, but ones that have been all stretched out and don’t hold there shape anymore….NOW TRY TO DO YOUR DAILY TASKS- THAT IS HOW WYNTER FEELS. That is where the problem comes in with her skull and spine. This is why Wynter needs Spinal fusion surgery.
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What is Atlanto-occipital instability?
BACKGROUND:
Atlanto-occipital dislocation / instability between a childs skull and their spine. In children it is very rare (only 16 U.S. cases where heard of until 2003) and was often fatal. It is defined as loosening or disruption of the ligaments that support the skull. Of those 16 cases, the 4 survivors underwent CO-C2 (skull to cervical spine #2) fusion surgery, and at the time of final follow up, one of the 4 was a success. We are very thankful that God has lead us to a wonderful Neurosurgeon team up in Philadelphia that is more experienced with this surgery at this day in time. With out the surgery, Wynter is at risk of severing her spinal cord at any moment.
What will surgery be like?
They anticipate surgery to be 9 hours long. When Wynter wakes up she will be in a halo and body cast and be in the ICU for the first few days, then move to a hospital room for a week. We will need to stay close to the hospital for another week or two after that, until they have cleared her to come back home. The first 1-2 hours will be screwing in the halo and 8 screws into her skull to stabilize her in the right position. Then they will open her up and do the internal fusion and apply the internal hardware (plates and screws into her skull, C1 and C2 vertebra) before taking the bone from her hip to put into her neck. Finally they will attach the body cast and do CT scans before it is all done.
When she wakes up she will have a drain in her head and one in her hip to drain blood and other things; she will also have a catheter (which with her bladder issues is another concern). She will not be allowed to drink anything until at least a day after surgery and have IVs in both hands and wherever they can find a place to put them. Morphine, Valium, antibiotics and some other medications will be given. We will have to watch for pneumonia and turn her body regularly. Her head will be in constant suspension by the 8 screws for 3 months while in the halo. By day 2 or 3 when the drains are out, she will have to start working with the therapist to learn to sit up, eat, walk, and everything all over again.
Wynter has over 20 doctors at this point in her life. So the added concern is the domino affect this type of surgery and recovery will have on the other areas of her body. Your prayers and support is much appreciated. Thank you.
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~Round trip Airfare for Wynter & mom for Philadelphia each time is about $700.SURGERY CHECK IN DATE: MARCH 7th 2013WHAT WILL THE NEEDS BE?PRAYER: Prayer to cover the doctors and hospital staff; for her safety; for safety in travel; that surgery will be a success; for her pain management; for the rest of her medical system that will be affected like her bladder and GI track; for her comfort; for the physical, mental and emotional state of her and all of us; for the Lord to meet the physical and financial needs listed below:PERSONAL CARE: Wynter will require ALL of her daily personal care to be done FOR her:- Care and cleaning of the 8 pins at least twice a day (this will require at least 2 people)- Body cast care,- Feeding (needs things cut small and fed TO her)- Toileting- Sponge bathing- Hair cleaning (with out getting the cast wet)- Skin care under the cast- Constant monitoring while she plays and manipulates through her day to ensure she doesn’t fall.- Someone to help with housecleaning/ errands/ transportation when we return- Other unknowns yetSPECIAL ITEMS:- All of her clothes will have to be 2-3 sizes too big, then strategically cut and manipulated to fix up and around the 4 metal bars.- She will need a very special car seat to accommodate the halo.- Wheelchair or stroller to accommodate the halo.- Sterile medical supplies for halo, body cast and wounds.- Other unknowns yetFINANCIAL:- Airfare for Mom and Wynter to get to and from Philadelphia several times, fist for surgery and then for post ops over the next 2 years.- Gas, hotel, meals for Dad and brother to travel to Philadelphia for surgery.- Funds for hotel (7-10 days)/ meals/ maintenance while in Philadelphia for 3 weeks.- Funds to pay the mortgage an electric bills since I will be unable to work for those 3 weeks.- Funds for the special medical supplies, clothes, DME equipment needed.- Other Misc. unknowns yetSurgery updates & Wynter’s progress: http://outsidethatbox.blogspot.comWEBSITE: www.outsidethatbox.org (PAY PAL ACCOUNT ON WEBPAGE)Contact information: Adam & Tiffany Young705 Gardenvilla Circle, Georgetown, TX. 78628 (512) 924-9680 tiffany_pa@hotmail.com------------------------------------------------------------------------------------------------------------------ DETAILED FINANCIAL:
- ~Taxi fare for the initial surgery will be about $250-300.
- ~Taxi fare for each 2 day follow up visits will be about $170.
- ~Gas for her dad & brother to travel to Philadelphia for surgery will be about $700
~Hotel will be about $150 a day (cheapest hotel we can find) x 9 days = $1350.
- ~Meals/ maintenance while in Philadelphia for 3 weeks??? Best guess $ 800.
- ~Funds to pay the mortgage an electric bill since I will be unable to work for those 3 weeks $128
- ~Funds for the special medical supplies, clothes, DME equipment needed $
- ~Other Misc. unknowns yet $
Then $1200 for each of the 4 follow up trip: at 6 weeks or 3 months (depending on infection and the halo) / 6 months/ 12 months/ 2 years.
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