Erin's 1 year Early Intervention Evaluation

Unfortunately I have to start this blog with the word Unfortunately...but unfortunately Erin's evaluation was not the stellar report we had been hoping for. She is 20 months and her overall average was @ an 8 month level. She has made some progress but not the kind of progress I thought she would've made. The OTs were here for about 2 hours and at the end when they read me the eval results I had to dig deep as to not burst into tears in front of them. I think they could tell so they were trying to be encouraging but I knew. They wished they had better news to give me.

I forgot how difficult "eval days" are. You have nothing but high hopes as the testing starts eager to celebrate in her triumphs but soon realize as they work through the steps that she isn't cooperating. You continue to be positive and say to yourself "she missed that one, but she'll get the next one" The disappointment grows. The tests is over. I try to laugh it off and be social but you can't help face the fact that something is definitely wrong. We have no diagnosis so I can't even grasp onto something to strive toward to help fix. Because we have no diagnosis no funding is available for therapy or other resources. We sit and discuss all the results of the test and I ask my miriad of questions to see if I can get ANY information about what hey think is going on but it's too hard to determine. After my Q&A we easily determine she qualifies for E.I. services.

Next evaluation will be her 2.5 years where we will start to discuss a transition into the school system if that's what we decide. Until then we have a long road and hopefully ALOT of progress to be made.

I hold my 4 month old in my arms as I say good-bye and feel the tears rising as I shut the door behind them. I cannot help wonder maybe I didn't work with her enough. What could we have done more of to help her along. I have a good cry and I'm over it. This only resparks my desire to work harder with her and see what we can learn together.

Thank you for ALL the love, support and prayers for my daughter. Your support means so much to us. Love Kellee & Erin

I can do all things through Christ that strengthens me. Philippians 4:13

Some Genetic Results

Today I received a phone call from our neurologist at Children's. When I heard his voice my heart sank. He said they received some results back from one of the three tests which shocked me. I wasn't expecting to hear back for months. The test they received back was for the chromosomal micro array; which tests 100's of different cells. He said 3 cells looks suspect but that didn't neccessarily mean anything significant for Erin.
In order to determine whether it's something significant Sean and I both need to be tested to see if our cells match her cells. If her cells are the same as ours it should not mean anything to her. If it's a new change within her cells that might be the reason for some of her developmental delays. I asked him if he knew what the outcome would be from the 3 "different" cells but he said he wouldn't know until we were tested. I also asked him if this meant anything regarding Rett but he said that result was not back yet and they have nothing to do with the chromosomal micro array. He told me that the genetic councelors would be in touch to schedule an appointment for our tests to be done so they could research whether they matched ours. More tests, more waiting, but we are trusting in the Lord and waiting patiently.

Genetics Meeting at Children's

Thursday we had our big genetics meeting at Children's that we have been waiting for for months. We discussed our family history and Erin's progress to determine what tests to have run based on that discussion.
We are still waiting for the results from the three tests the pediatric neurologist ordered back in October. We won't have those results for 2-3 MONTHS! The good news is based on her "medical presentation" the doctor said if she had to bet on a diagnosis it would not be Rett Syndrome. Obviously, we were very happy to hear that but until we get the results it's still in the back of our minds. We will continue to pray and know that whatever is going on with Erin is all apart of God's plan. Only he knows what is best even though we cannot understand it. She is continuing to make progress each day and that is all I can ask for. Thanks be to God.

Psalms 139-12-14
"Even the darkness is not dark to You, And the night is as bright as the day. Darkness and light are alike to You. For You formed my inward parts; You wove me in my mother's womb. I will give thanks to You, for I am fearfully and wonderfully made; Wonderful are Your works, And my soul knows it very well."

Jon Rocks!

Have you ever met someone that you KNEW was going to be an important person in your life? Your not quite sure why but in our case we knew.
Last night we met Jon. Jon is the Director of Pediatrics at North East Rehab and he came to our house for 1 hour to work with Erin last night.
I can't tell you sense of relief and HOPE I felt when he left our home.

My daughter is 17 months. She doesn't sit up by herself. Most of you that have infants understand how far behind that is. Most kids are walking by 12 months so that gives you an idea. Jon was here on his first visit to meet with Erin and evaluate her physical abilites. You can tell he works with children and loves what he does. He had Erin laughing within minutes of meeting him. He watched her move around or should I say roll around to see how her muscles were working and to see her in action. They were getting to know each other and it was fun to watch. She was super smiley and giggly almost as if she knew he was here to help her. Sean and I sat back and watched them interact and get acquainted. A special little meet and greet. I felt so happy that someone with his expertise was going to be apart of her life now and shortly I knew why.

After working with Erin for only 5 minutes he had her sitting up almost by herself. This is no small feat in our eyes because Erin has never sat up unless we pulled her up ourselves and he told us she pretty much knows that too! We are enabling her in so many words and we need to help her help herself. He showed up a few steps on how to get Erin to sit up and as if by magic she got it! I even videoed it so we would remember the steps to practice it with her. He did say it takes a child between 1000-5000 "trys" before they get it so we still have quite a way to go but we saw hope and progress. It was awesome!