Our New Life

We definitely have a new life. One that is strange, but I totally asked for it. Many of you know the struggles we face and understand. Many of you do not. This blog is an attempt to keep family and close friends up to date.

Back in June our Annie was diagnosed with Autism. That day I came home and poured though the internet to find how I could get services for my child. I FINALLY have them all in place. Annie has a medical card through medicaid because of her "disability". This helped get Annie under the Michelle P. Waiver which provides an ABA therapist, a staple of autism treatment. The Michelle P. Waiver will also provide a therapy aide that will reinforce the ABA therapy mostly in the evenings and on weekends. Annie still also goes to speech and occupational therapy every week. We also have a program called Impact Plus through the state of KY that allows a therapeutic support aide to come in our house and take Annie out in the community to work on different life skills that she seems to have difficulty with. This also provides a behavioral therapist. Her week is extremely busy. She has preschool for 12 hours a week. ABA 7 hours a week. Behavioral therapy 3 hours a week. Therapeutic support aide for 10 hours a week. Therapy aide for 6-15 hours a week. Speech/Occupational therapy 2 hours week.  She's a busy girl as you can see but this is what I was fighting so hard for. My daughter to have a chance and get intensive therapy at a young age. What a blessing.

I know many of you have prayed and been so faithful and I can't tell you what that means to me. You have called and texted and asked how you could pray for Annie or how you can help us. Those of you that are there and know our daily struggles and pray, thank you. You won't ever know what it means to me.

Annie still struggles on a daily basis. We basically take her day minute to minute and things can change faster than that. We are still doing biomedical treatment with her DAN! doctor which consists of testing and treating high metals in the body, testing/treating bacteria/yeast in the gut, improving immune function, and SO many other things that I cannot begin to name off. Biomedical encompasses a vast amount of information. It is expensive to say the very least. Annie has HUGE meltdowns, making it very difficult, even impossible, to take her out in public. We don't lead a normal life. We don't really go out as a family. She gets sensory overloaded and frustrated VERY easily. She struggles with communication breakdowns and often can't tell us what she needs or wants. She has a hard time with transitions, meaning, going from one activity to another, or going from one place to another. Just going from the car into the house could create a big meltdown that could last 5 min to 2 hours. She still tip toe walks which she will be fitted for leg braces within the next few weeks. One positive thing we have seen is a burst in language. She has increased her vocabulary and affection. She does script alot. Scripting is common in autism. She takes phrases and words she has heard multiple times and says them over and over with no meaning. She also has problems with speech pragmatics. So if I come in after she hasn't seen me in a while, she would say Good Morning Annie, in stead of hi mommy. She knows she supposed to greet you, she just doesn't know how to do it. She has no self-preservation skills. She will run or dart out in the road or just run and never look back. This has begun our thought process on how to keep her safe. I've heard alot about children who wander and often die because of their wandering away from home and to a place of interest to them such as water or the woods,etc. We plan on making modifications to our house to keep all of our children safe.

We have alot to be thankful for. Our therapeutic support aide who comes to house 10 hours a week, Stephanie, is awesome. We love her. Annie and Joslyn think she is the greatest. She plays and helps with both girls even though she doesn't have to with Joslyn. I'm thankful for this. At times, I have alot of guilt over Joslyn. I don't want her to feel left out. So this is huge for Stephanie to include her in Annie's treatment plan. She will never know how much I appreciate this. She is sooooo good with the girls. She is a former social worker and a mother of two. God knew exactly who I needed and sent her to us. What an angel. I feel like I have a great team who care about and fight for Annie. These are answers to yours and my prayers.  We are on our way to recovery.

Joslyn is doing well. She is growing physically and socially by leaps and bounds. She does still have some speech delays and motor planning problems, along with sensory issues but is making progress all the time. She is also in speech and occupational therapy every week. She is my big helper and miss Boss. She enjoys preschool and is totally potty-trained. She makes us laugh with her random sayings and songs she sings. She makes me smile and will be a lifesaver, I'm sure, in the future.

Bella Boo is my baby. She has the biggest smile and is so happy. She cries when she is hungry and tired. God blessed me November 23, 2009 when I found out I was pregnant with her. The doctors told me my HCG was low and that I might miscarry. Then, at 35 weeks, they found out I had obstetric cholestasis (gall bladder slowing) and was increasing my bile acids in my blood. These could cross the placenta and clog it making there be a risk of still birth. It was determined that they would deliver her right at 37 weeks. After 37 weeks the chance of stillbirth increases significantly. I also had gestational diabetes and lungs take more time to develop when the mother has this condition so I was also afraid of her lung immaturity. God spared her any problems and she was born July 15, 2010, a month after Annie was diagnosed. That was a very stressful month between June and July.

Me and Josh continue to love each other and maintain a marriage with respect, honesty, and integrity. I couldn't have hand-picked a better man to walk this life with. He is a caring husband and the greatest father. I can't even begin to say how much I love him and appreciate him for who he is. He's a testament to hard work and living a life of no excuses.

This might be full of details, but I also keep these "blogs" so I can look back and see where we've come from and where we're going. Thanks to all who are interested and to those of you who continually let us know you love us.

Here is Annie singing "O God, you are my God." It is a great thing to hear her singing about God and one day I pray this song will have meaning to all three of my girls.

One more thing, the video below is an excellent description of what our day might be like. So when you are around us and Annie acts a certain way, please have patience and know we are doing our best.