Cai has struggled over the last few years, but, recently, things have gotten worse. She needs IV fluids more often. She does not eat well, and, at times, she only averages one meal a day. Most pressingly, she is having recurring kidney stones, and her little kidneys can only take so much. There were attempts this summer to take all medications away to assess options and attempt other avenues of intervention; the outcomes were not successful. We have not been able to get her pain stabilized completely and her appetite has not returned to the level it was before the medicinal reevaluation.
We find ourselves heading to a surgical procedure that will be placing an intracranial bolt to assess pressures in Micaiah’s head to see if she will benefit from a VP shunt or determine if her dura patch placed at 26 months is causing too much pressure and needs to be altered. Either way, her brain will experience surgical intervention at least once, if not twice pending the intervention decided upon by the medical team.
As this journey has progressed over the years, we have discovered all three girls and myself have Ehler's Danlos Syndrome. This has caused difficulties in Londyn, and she is showing to have occult tethered cord. She has scoliosis at 18 degrees, and her Chiari herniation is 2 mm and 3 mm, which could be due to tethered cord. She is having multiple symptoms that cause difficulty in daily life, and we have learned that she too needs to have surgery.
Ehler's Danlos Syndrome (EDS) is a diagnosis where the body's collagen is developed incorrectly. EDS can make healing difficult and a concern with wounds is that it takes specific closure of wounds and close monitoring. There has also been a need for Cai's pressures to be monitored closely and to assure both surgeries have the most conservative approach possible. The doctor capable of these skills is in New York, New York.
This information above is what has lead us to humbly request of all our family and friends to please be willing to first and foremost shower the girls, our family, and the medical team in prayer. We are seeking grants and assistance from eligible sources, but we will have percentages of medical bills from the surgeries and medications along with travel, meals, rental car, and hotel costs to consider in order for these medical procedures to become a successful reality. Katie is now in private practice, paid leave is no longer part of employment. We have a back up of medical bills from all the girls and Katie's battle with these conditions that also render stress to assure proper providing for these much needed interventions to help improve quality of life.
We cannot guarantee access to Ronald McDonald house at this time. Londyn's procedure will keep her there about a week and hopefully, Daniel will come back with her after Micaiah's surgeries are complete, Micaiah is stable, and Londyn is cleared to travel. Micaiah will have to stay in New York for the week of surgery and at least another week, if not 10 days, after the surgery. Katie will stay with Micaiah because her schedule lends this flexibility. Surgery is currently scheduled for Wednesday March 14, 2018. We know that is quick, but we were just given the official date last Friday. We would be humbled and absolutely appreciate any assistance that is possible from our friends and family to help achieve more possibilities for our girls’ future health.
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