Oct 19 2013
My daughter, Mia Rayne, has had quite the journey since she entered the world. After a very troublesome pregnancy, Mia Rayne was born at 34 weeks gestation; she spent the first 13 days of her life in the intermediate nursery before being discharged to come home. I was on bed rest and off work for 7 months. During that time she had multiple NG placements for feeding, assistance with breathing, and treatment for jaundice.
September of 2010, our life as we knew it changed. Mia was taken by ambulance to the closest children’s hospital with the diagnosis of pneumonia. During this 3 day stay, she also was diagnosed with asthma. This stay was not long after her vaccinations. Mia always seemed to have a reaction to any vaccination, so at this point we are very behind, because we have stopped giving them to her.
The next 8 months, Mia hardly ever had a well day. She has had pneumonia 8 times since that stay, been diagnosed with severe allergies, severe GERD, allergic rhinitis, asthma, atopic dermatitis, bilateral calcaneal valgus with ankle pronation, developmental coordination disorder, mixed receptive language disorder, static encephalopathy, and now Autism. She had ear tubes placed in March of 2011. Most recently we found a chromosome anomaly 423 kb micro duplication of 11q25 during her genetic testing. May 4, 2012 she had to have 4 hours of comprehensive dental surgery done to repair damage to her teeth and gums due to her medication history, reflux, and not being able to consume milk products. This surgery included a maxillary labial frenectomy, restorations on 10 teeth, crowns on 9 teeth, many fillings and other procedures.
Most of Mia’s life all she has known is the inside of our home, doctor offices, hospitals, therapy, and taking medications. Her severe environmental allergies do not allow her to go outside, unless to go to the car for a doctors appointment. Mia takes allergy shots. In the beginning of her allergy shot therapy she was receiving up to 16 shots per week. We had to remove all carpet flooring, rugs, drapes, cloth furniture, and any toys that had cloth from our home. We also use specialized filters which require changing every 30 days, and the fan on our central heat/air unit to never be turned off.
Mia does speech therapy, occupational therapy, physical therapy, developmental therapy and ABA therapy totaling 45 hours per week. We have implemented a gluten free casein free diet for her, and we monitor her intake of sugar and food dyes as well. Most recently, we have started vitamin and mineral supplements as well as digestive enzymes as recommended by her nutritionist. Once we took the gluten out of her diet she was able to go from speaking only 2 words with meaning to almost 100 words within 6 weeks. She is like a new child. Once we mastered the casein free diet, she now is able to sleep through the night, which hadn’t happened in over 2 years.
Mia has been in an early intervention program since February 2011.
Our hope for Mia is to give her every chance she has to grow as an individual and the best chance to feel like a normal child.
God chose my husband and I to be Mia’s parents. I know he doesn’t give us anything we can’t handle. I have accepted the fact he wants me to care for a special needs child, and hopefully in the future my knowledge from Mia will allow me to help other parents or children with special needs.
My husband and I both work full time jobs and both are very active in Mia’s therapy and medical needs. We both want the best for her and we are hopeful that biomedical treatment would improve her daily life. Mia’s medical history is long and complex. We have found conventional treatments for Mia is not always enough to treat her. Currently we have been trying to get a severe diaper rash treated in which time we have contacted her pediatrician 8 times, 2 emergency room visits (because she was holding her urine), 1 visit to a convenient care center, and a pediatric urologist. We are still in the process of trying to get an answer for treatment for this.
I spend every waking moment reading, researching, and documenting things to try and help Mia.
Since Mia’s birth my husband has had surgery, and I had to have a hysterectomy done last year, which was six weeks recovery off work. I also have multiple other health issues as well. My husband and I have been married since September 18, 2006. Mia is our only child.
Mia is such a happy child. She warms everyone’s heart that she is around with her beautiful smile. She is unaware of how hard her little life has been so far. Mia is such a strong child.
My husband has been a volunteer fireman since 1996, and he is also a trustee at our church. We are very involved in our church, and glad Mia is able to attend church and she is accepted and understood by our church family.