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Tuesday, February 28, 2012
Monday, February 27, 2012
A Mothers Instinct
One of the main goals of my blog, is to help someone else not to have to go through everything we have and learn things the hard way. I was 26 when Mia was born, and she is an only child. Every time I would take her to the doctor or suspect something was wrong, I would get the "oh, your a first time Mom, don't worry..." I got so over hearing the first time Mommy syndrome I could scream. I heard it from doctors, family, my spouse,...you name it. The biggest lesson I have learned on our journey is to trust my motherly instinct. If you feel something is wrong with your child, advocate, and don't take no for an answer. Most of the time that motherly instinct that God instilled in us is right. Grant it, I haven't like being right a lot on this journey. I was told a lot, "your always looking for something to be wrong" but that wasn't the case....I just couldn't help that there was always something wrong. Your child is God's first, and yours second. He trusts that he has given you all the tools you need to care for that child while they are here on this earth. Trust yourself, pray, and find at least one person who can love and support your feelings, fears, and decisions. Hopefully that can be your spouse, but it's okay if it takes them time to accept what they cannot change. I am here for anyone that needs support, because believe me, I have been through many things that have made me who I am today, and I am not afraid of the mistakes I have learned from, and want to share and help anyone who needs a shoulder from someone that understands.
Sunday, February 26, 2012
Our Journey So Far...
My pregnancy
I was in the hospital at 6 weeks bleeding. Was on bed rest by 22 weeks pregnant. Began contractions every 3 mins at week 24, which continued until I delivered. I lost 18 lbs, but wasn't sick at all. They did 14 ultrasounds while I was pregnant, which looking back now, I wish I could have changed. I was admitted to the hospital at 29 weeks for 3 days on a magnesium drip to stop my labor. This visit I got steroids to help develop Mia's lungs. She hadn't hardly gained any weight until this point. Without those shots, from my previous ultrasounds, they said she would have only been about 3 lbs full term.
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| Daddy with Mia in hospital. |
Mia was born prematurely at 34 weeks gestation. She weighed 5 lbs. 1 oz, and was 18 inches long. She spent 13 days in the intermediate nursery before we could bring her home.
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| Mia's 1st photo! Mia was a very happy baby. She never hardly cried, and slept really well. At 7 weeks old she was sleeping 14 hours through the night. She was a good eater, never spit up, and we could do anything with her. At 4 months of age she got her first 2 teeth, by 1 year had 14, and by 18 months had all baby teeth! We were very shocked, because we had been told with her being a premature baby, she would more than likely be developmentally behind on most things. |
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| 6 Month Photo |
By the age of six months, she spent most of the time in her exersaucer, and loved watching Mickey Mouse Clubhouse.
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| 9 Month Pic At the age of 10 months everything changed. For about 3 weeks straight she was up nightly screaming, and we could not figure out why. We would drive around all hours of the night until we could get her to sleep. It was very strange. I took her to the doctor, and she was treated for Strep. She really hadn't shown any symptoms, not even a fever. Two days later, she woke up and could barely breathe. We were taken by ambulance to our local children's hospital. Mia was admitted for 3 days for pneumonia. She was also diagnosed with asthma during this hospital stay. Little did we know our life would never be the same after this. |
Mia & Daddy
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| 1st Hospital Stay with Pneumonia After this hospital stay from September of 2010-March of 2011, Mia only had 23 well days. She always had something going on. So in the beginning her developmental days weren't our biggest concern. With her never feeling well, it seemed natural that she wouldn't be doing as much as other children her age. We also stopped her vaccinations after this visit. |
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| 1 Year Our pediatrician recommended we get Mia tested for allergies. They tested her with 60 different skin probes, and she was allergic to all but 1! We chose to do cluster shots to get the most benefit as quickly as possible. Mia would get 16 shots a week at the beginning. At this point we were told that her allergies were so severe to avoid taking her outside (which we have yet to be able to do with her), get rid of all carpet, rugs, drapes, and cloth furniture or cloth item in our home. If you take a look around your house, you would be amazed at the amount of things you would need to get rid of if you were given this news. We started removing things in our house and are still in the process of getting everything finished. We have installed hardwood floors. After about 6 months we were able to get a leather couch. (we were so happy to be out of plastic lawn chairs!) We use special filters in our furnace as well. |
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| Allergy Testing Mia got ear tubes placed in March of 2011. She began walking 2 days after her surgery. She never really got many ear infections, but her ears were completely full of fluid. |
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| 18 Month Pic April 2011 18-24 months for us was specialist after specialist. Once we got her asthma under control, we could start working on some of the other things that we knew would have to be addressed. Frequent pneumonia and the fear of permanent lung damage made her breathing issues the first thing we had to control. Mia has been in the First Steps program since she was about 17 months old. We have great therapist who have helped her so much. |
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| PH Probe May of 2011 we were in the hospital for 2 days to get a 24 hour ph probe and an infant pulmonary function test. Mia re-fluxed 244 times during her test, so her re-flux is severe. She currently takes 2 doses of Zantac per day, and 1 dose of Prilosec. We also give her Kartzinel Probiotics, which seem to make a huge difference too. On July 15, 2011 I had to have a hysterectomy done. I wasn't able to pick Mia up for 6 weeks. |
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| 2 Year Two weeks before Mia's 2nd Birthday we got her Autism diagnosis. We also just got genetic testing done. She has a duplication on her 11th chromosome. We see a geneticist in March. January 12, 2012 we began the GLUTEN FREE diet. It has been amazing. Mia has made so many improvements with this diet. She has went from about 2-3 words with meaning to almost 50 in just 6 weeks time. Patience is now in her on most days. Comprehension is increased dramatically. "Mia Meltdowns" as we call her tantrums are definitely not as many per day. She interacts with other children more, and has good eye contact now. She also has started giving hugs and kisses, which was something we never really got from her before. I say all the time, she is the poster child for the gluten free diet. We saw results in just 12 hours. AMAZING!! Bio-medical interventions work for some people. Every child's autism is different. Everything we will put on our blog is the things we have tried, and what works and hasn't worked for us. Don't give up.....it just takes time to figure out what your child needs. Mia's weekly schedule at this point is 40 hours of ABA therapy, 1 hour of speech therapy, 1 hour of developmental therapy, 1 hour of occupational therapy, and 2 allergy shots 3 times per week. Not counting any other scheduled doctors appointments. We also are getting ready to start weekly physical therapy. February 2012 We just got over our 9th case of pneumonia, along with a double ear infection. Antibiotics by mouth seemed to have stopped working for Mia since she has been on them so much. We had to go get rocephin shots every 24 hours for 3 days. She went 9 days without eating, and ran a fever up to 103.5 for over a week. |
Friday, February 24, 2012
Welcome
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| One of Mia's 2 year pictures. |
Craig and I both work full time jobs, as well as keeping up with all of Mia's medical needs, therapies and appointments. We currently do 40 hours a week of ABA therapy, 1 hour a week of speech therapy, 1 hour a week of occupational therapy, and 1 hour a week of developmental therapy. Soon we will also be adding 1 hour a week of physical therapy.
Mia takes many different medications including allergy shots. We also use supplements to help provide her with the vitamins and minerals in which she is deficient because of her diet and sensory issues with certain foods.
We attend Vienna Baptist Church, and know God blessed us to be Mia's parents for a reason. Raising a special needs child is never easy. We feel very lucky to have each other, and very thankful that we are both active in Mia's life and her medical treatments.
We do not qualify for SSI, Medicaid, Food Stamps, etc. Most of Mia's medical conditions have costs related to them that are not covered by insurance. For example, the special filters we use in our furnace are very expensive and we always have to keep the fan running to trap those allergens. This increases electric usage dramatically.
I came across this saying on an autism website, www.tacanow.org., and it really touched my heart.
"It takes courage, to be of heart, to let go of fear, not to be afraid to see and speak the truth, to let love be your driving force not anger, to live life as everything is a miracle, to see uniqueness, beauty, and perfection in our children. Remember: The journey of a thousand miles begins with one step."
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