Tuesday, March 31, 2009

A long process

At times, like now, our posts will have a lot of information about our other two children, Ethan and Emily. Anything that affects our family, affects AnnaSophia too. I have been working diligently in obtaining services for Ethan. I have run into a lot of roadblocks with our school district, but I am very excited about the fact that we just recently got an advocate for him. She will come to the next meeting at our school district, advocating for Ethan and our family. This is a blessing because she knows Colorado law, and I don't.

I have recently toured a school in our school district that has an autism program for high-functioning kids like Ethan. God seems to be opening this door wide, and He has closed others. I just pray that the Lord will clearly steer us where Ethan needs to be.

One of the options that Steve and I have been exploring with great interest is the idea of an autism service dog. Originally, we thought that these dogs were exclusively for the physically handicapped or non-verbal/low functioning kids. What we have found through our research is that kids like Ethan benefit tremendously from these specialized dogs. The dogs help to calm and stabilize these kids emotions and also serve as a social bridge.

Before we even researched this idea, Ethan started telling us that he wished he had a dog that could love him and be his own. We thought about just trying to adopt a dog and have it independently trained for him. After talking with many experts in the field and Canine Companions, we were told that this would be a serious gamble. Canine Companions thought that Ethan would qualify for a dog and encouraged us to apply. We just received the application in the mail yesterday. We also are looking into an organization called Assistance Dogs of the West. They are an amazing organization that trains dogs specific to Ethan's needs.

The idea of Ethan having a 24/7 canine helper is an exciting idea for us. Ethan has many serious fears, and having a dog would mean that he could actually put his clothes in the clothes hamper in Steve's and my bedroom without a family member accompanying him. He could get his school supplies from downstairs without becoming hysterical. The dog would hopefully calm him in the middle of the night when he wakes up and can't get back to sleep. Sometimes, Ethan has been know to function on only 3 hours of sleep in a 24 hour period, because he has such terrible sleep problems. Medications help some, but not always.

We are still attempting to adjust his medications We are not having much success with Tegretol. The doctor may try Depacote next. The doctor is being very careful in his choice of medications for Ethan, as he is at risk for developing Bipolar Disorder. Some medications can actually increase this risk for him. We are very thankful that we have a wonderful team of doctors in Denver for him. We pray that the Lord will continue to open doors and direct our path.

Mary and Steve

Friday, March 27, 2009

New photos

AnnaSophia loves her new stroller!!!


Steve came home one night with this stroller/walker. When AnnaSophia saw the box, she instantly knew it was for her, and she squealed with delight. After Steve put it together, she pushed her stroller for an hour! She started losing her pants, so we just took them off. Good thing, too, because she was sweating from so much "exercise".

AnnaSophia thinks it's hysterical to play peekaboo. Here she is so tickled that she can't keep her tongue in her mouth.


AnnaSophia loves to play in Emily's dog bed for her Build-a-Bear dog. She knows that if she crawls in the bed and sits nicely, Emily will push her all around the house in the dog bed.



Big smile!








Wednesday, March 25, 2009

Finding my blogger voice

I apologize for the long silence on our blog. Many of you have called or emailed us with concern. We appreciate this so much, and I hope that I will be able to maintain our posts consistently now. I have attempted to update our blog many times, but the words just wouldn't come. Our family has gone through a really tough emotional and spiritual time. This past year has been a really difficult year in many respects, and sometimes we find that we have been running on adrenaline for so long, that we forget what it feels like to just "be normal". I actually thought that when I got back home from living in Denver that things would be easier. In fact, life was more difficult in certain aspects. I can honestly say that each family member has gone through times of personal crisis since our return. There have been times recently when I cannot feel the presence of God at all. It is like being in a spiritual desert, and even though I don't feel the Lord's presence at times, I try to rest on the His truths that He reveals to me in scripture.

AnnaSophia is actually doing really well. Her cyclosporine levels (anti-rejection medication) are finally stable. Her last clinic appointment went well, and Jilayne was thrilled at how good she looked. She continues to grow and thrive, her echos are stable, and she finally cut her upper teeth! It only took three months for those two little teeth to break through. Apparently, "gum-tissue overgrowth" is a side effect of the cyclosporine. She will have lots of hair, big gums and be as cute as a button. AnnaSophia is also trying to walk now. She is standing on her own at times and will occasionally take steps. She is truly a blessing to us.

In addition to taking care of AnnaSophia and homeschooling Ethan and Emily, I have been working hard to get Ethan the care he needs. Ethan has been diagnosed with Asperger's Syndrome (an autism spectrum disorder), a Mood Disorder, and mild Tourette's Syndrome. We have been working with several experts in Denver, trying medications and also some behavior modification. We have seen some improvement, which we are very thankful for.

Our struggle has been with establishing an IEP (Individualized Education Plan) for Ethan. Steve and I believe that we are entering a new season in our family, one in which Ethan is going to be transitioned to school outside of our home. This has truly been a struggle for me, but I don't feel that I can provide everything that he needs in the homeschool environment now, and still be able to do an excellent job homeschooling both Ethan and Emily. It is our belief that Ethan has a strong moral foundation, but as he is getting older, he needs to learn how to function in the world. He needs special resources and our job as parents is to prepare him and give him the best possible future that we know how.

Unfortunately, this is not an easy task. Working with our school district has been confusing at best and nightmarish at worst. After many days on the phone contacting local resources, we were finally able to get an advocate to help us negotiate this process. I have many irons in the fire right now-too many to list. I just pray that the Lord will continue to guide us in the right direction and open doors.

While speaking with a friend recently, I told her that I wasn't sure what to post on our blog. She told me simply to ask that people pray for our family. So following her wise advice, I humbly ask that our dear friends and prayer warriors would be able to pray for our family and against the schemes of the enemy.

In His Love,

Mary