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."

Special Needs Coordinator Visit @ Children's

October 22nd 2010
Today we had our visit with development services called complex care at Children's that I have been very much looking forward to. After checking in and sitting down I looked around the room at the other children. Children that were very severely handicapped and will never be out of the care of their parents or able to live on there own. Couldn't feed themselves, would never graduate from college, get a job, get married or be able to have children. Children in wheelchairs with trecs. This CAN'T be the right place for MY daughter! It just can't be. Erin, who looks perfectly normal, interacts with us, smiles, eats and sleeps well is not going to end up this handicapped. I just can't accept that outcome. I am still of the mind set that she will grow out of her development delays and then they send us to a place like this? It was a huge reality check/wake up call that I didn't want to let penetrate because then it's as if she really won't be that bad off. I still believe with enough prayers and time she will advance and be a normal kid.

We were called into the office and met someone who I think is going to be a very important part of our lives for the next few years. Dr. Laurie warmly greeted us and sat down and gave us a thorough interview regarding Erin and her developmental/medical history then proceeded to her physical exam. After everything was discussed she said she wanted to see how she progressed in the next 3 months and re-evaluate her progress. Once we saw how she advanced she would have a better idea/plan for Erin. I was happy with that outcome because if she sent us out with another list of doctor's to see that would've been worse than "ok, see you in 3 months!" So we go home and see how it goes!

Overall I was very pleased to meet someone who will finally help us navigate through this process with the best possible outcome and resources for Erin and our family. I feel hopeful and am optimistic about the future. Thank you Dr. Laurie! You are everything I hoped you would be and more!

Children's Hospital...again!

Tomorrow we have a visit with a special needs coordinator to discuss Erin's developmental delays and to see if we can get plugged into the system to get some help for her. I am actually looking forward to it. It's lonely having a child with developmental delays when all of your friends children are excelling and thriving. Don't get me wrong! I am very happy that they are, but they don't understand how upsetting it is to see your child roll around on the floor struggling to sit up flailing around from side to side and finally giving up because she relents.