Wednesday, September 28, 2011

Diaper drama and therapy progress

It seems my diaper post created a buzz about town. I received more emails from non special needs parents and special needs parents than I ever have. The tone of the emails reminded of the parting of the red sea. The non special needs moms were so sweet and generous offering me great advice on where to pick up bigger diapers. The special needs moms realized I was upset I needed diapers at all and that Pampers email sent me over the edge for a few minutes. Regardless, both sides were just so nice and I was overwhelmed by all the amazing help. For the record my medical supply company is working on obtaining the diapers again through the MDCP program.

I reached out to therapy 2000 here in the metroplex and they can do in home therapy for Jude. This is amazing! They are pursuing physical, occupational, and speech, which is what he has at Baylor. The bus driver almost injured our nurse and Jude transporting them to Baylor on Monday so the in home therapy is a must in my eyes. I also talked to the medical equipment company about the new wheelchair. They are going to wait until the physical therapist has been assigned by Therapy 2000 and then they will work together to secure the perfect device. We also heard from our nurse of a doctor that can do a test to tell what Jude can actually see. I find this fascinating! We will be completing that test for sure.

So Emily is doing well. She has her big birthday party/fundraising event next Friday. We are completing 400 Smile Boxes to go out to local hospitals. She has a raffle, a costume contest, and more to raise funds for her charity. She is also doing well in school and is busy working on her play the "Wizard Of Oz". She has also decided that her future goal is going to be to compete in the Miss Texas/America system for the Miss Outstanding Teen. This is a lofty goal, but once I think she will do well at. We are working on getting her "resume" together showing her scholastic abilities and accomplishments. She has chosen that her platform will be Pediatric Stroke Awareness and she is currently picking a monologue for her talent. She needs to obtain an acting coach if anyone knows of one that is willing to work with her on the weekend.

After Emily's party I have decided to take a break from everything until January 1. I need some rest and would like to spend some time with the family.

1 comment:

Reagan Leigh said...

I'm glad that you are continuing to pursue the diapers. That will take a small load off your shoulders. I am interested in hearing more about this vision test. Reagan has been seeing opthalmologists and neuro-opthalmologists at Texas Children's since she was 5 months old and none of them have ever mentioned such a test! I'm curious of the name of this test and if it really does in fact provide an accurate measurement of what a child is seeing!!