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AKHLASS's Photo AKHLASS Posts: 214
12/3/15 7:39 P

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Yes, both have sensory disorders. My daughter has Autism too. My son is still getting evaluated so he has not been diagnosed with Autism.

MIAMIRN's Photo MIAMIRN Posts: 2,430
12/3/15 3:21 P

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Hi!

I worked with families such as your's for close to 25 years. I am a reired pediatric rehabilitation RN. Most of my 30 years in nursing was caring for chronically ill children with their family members. I loved my work. It was very gratifying.

I commend you on your commitment and dedication to yourchildren! You have accomplished an amazing feat of stregnth and endurance. I know how hard it must be to keep up with your health with your lifestle and some unnecessary hardships. It is so bad how the health care system makes it so difficult for patients. I hope you have a speedy recovery.

So tell me, do your children have sensory problems or Autism? You neglected to say.

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My name is Elona. I live in the Philippines.
Love life! Never, never give up! Never give in, never give in, never; never; never; never give in nothing, great or small, large or petty. Never give in except to convictions of honor and good sense-Winston Churchill. When you have a lemon, make lemonade!


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AKHLASS's Photo AKHLASS Posts: 214
12/3/15 2:11 P

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My children are my life. They are blessings from God. I am a mother of 8, but only 2 of my children are alive. My life is very chaotic trying to manage it all without any family or support from anyone besides my husband who does not involve himself in all the medical planning, appts, therapy, and authorizations.

Yesterday, I started the day with my daughter's nurse calling in sick. My daughter Ameena age 10, she is severely disabled (cerebral palsy, epilepsy, sleep disorder, feeding tube (she cannot eat food), diapers). She can walk but needs close supervision (handholding) because she can lose her balance, she cannot walk up or down curbs, she has no danger awareness, she cannot speak or perform any activities of daily living for herself, she has seizures, and she may lie down on the ground (like a toddler) because her developmental age ranges from 10 mos to 2.

I have been her 24/7 healthcare worker since she came home from a 5 month NICU stay after she was born in 2005. We do have limited nursing care 40hrs M-F. My home is like a mini hospital, lol. I deal with deliveries from 4 different pharmacies and the dreaded authorizations for all the medication and equipment.

I also forgot to mention my daughter does not go out to school because she gets sick too often when she did so she receives 5 hrs of school each week (2,2,1) and 1 hr. of speech therapy. Yes, that is all the LAUSD school district provides for children at home and she loses 1 of the 5 hours a week when the school has special days like early dismissal or teacher conference etc,.. We split the 5 hrs a week up in 3 days. She had 1 hour of speech yesterday. Also, I will be bringing out to her 2x a week to CCS for occupational therapy and for 2x a week for physical therapy. She has a new IT assessment beginning thos month and her IEP in February. I have to fit in pediatrician, eye exam, dental, neuro is Jan, and endocrinologist. My schedule is really crazy!

I have 3yr old boy, Yaseen, he is adorable. He has some minor developmental delays/sensory disorder so we are in the big process of getting evaluations. He was approved for speech therapy which will be starting soon and I will have to drive him 45 min away 2x a week for this. There will be 5 additional assessments scheduled in the next 2 months as well and his IEP. Also medical appts; hearing exam is next week, I still need to schedule eye, dental, and another pediatric appt.

My health has declined because I am exhausted, and I am stressed from managing everything. The past 2 weeks I have worked on making big changes. I have implemented a new diet plan, taking metformin 1000 2x/day, 15 lantus insulin at night, testing blood sugar, blood pressure meds, and I visited a doctor each Friday to monitor my medication, and I will see him tomorrow. He told me I need to see all these specialists to make sure I am ok because my blood work was bad. I have anemia, type 2 diabetes, high blood pressure, and vitamin deficiencies. I had a mammogram last Monday. I will see GYN next Friday for papsmear. I am waiting on Cardiology appt I faxed them yesterday. I need to general surgeon to remove a cyst from my back. I need to see ENT for a biopsy for suspicious growth, same situation with Urology (blood in the urine), but they won't give me an appointment because they don't accept his referral and prescription. They told me to go to the USC hosptial urgent care to be seen so they can refer me. We have 0 person to watch my son so I will have to schedule time for my husband to watch my son so I can sit there for hours waiting to be seen. I'm sure I am missing more I have to do as well.

Yesterday was very hectic, but I managed to end my day with a family walk at 9:45 PM. We all walked for 37 minutes. My kids enjoyed it.

Thanks for listening!!!


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