Tuesday, August 07, 2007

I decided that I am officially Jordyn's personal medical secretary. And most of the time, the photo to the right is how I feel! For the past two days I have been going to appointments, calling a lot of people on the phone, filling out paperwork, looking for old paperwork, and looking things up on the internet. My head hurts!

On Monday, we met with a company that provides us with a "service coordinator" that will help us access resources for Jordyn and coordinates Jordyn's care and services. What does that mean? Well, I am still trying to figure it out. Basically they help us find all the services we need and will keep us organized. They will even make appointments to certain places for you and go with you to certain appointments. Once I work with them for a while, I am sure I will understand it more. When they came to the house yesterday (the owner of the company and our new service coordinator) I got to tell them all the services that we need to find (services we had before we moved) and they also recommended services I might not even know about here in Idaho. This was the list of all the places Jordyn needs services from:

  • Pediatrician
  • Opthamologist
  • Geneticist
  • Dentist
  • Orthopedic Doc.
  • Orthotic store (foot braces for standing)
  • Wheelchair and equipment store
  • Diapers
  • Therapy
  • School
  • Support Groups
  • Babysitting/Respite care

It was very helpful to have them tell me exactly where to go for each service or to give me ideas of who I might go to. After all was said and done, I was glad I met with them. I did learn about a few cool places that I had no idea even existed. The one I am the most excited about is a "lending library" that checks out special needs equipment and toys for you to try out. I can't wait to see what cool gadgets they have for Jordyn to try.

Today we went to the neurologist. We met with the physician's assistant in the office. I did end up meeting the neurologist before we left though. They were both very nice and I didn't really mind meeting with the P.A. because he was very nice and great with Jordyn. It basically took the majority of the appointment to review Jordyn's history. You would think I would have it memorized by now, but it is impossible to remember when and where she did this or that for the past four years! It seems like I always get home and remember something important I forgot to tell them.... oh well. They said that her EEG had not changed any from two years ago. She has brain waves consistent with a child who is dev. delayed. Nothing new there.

They they recommended we take her to what is called a Pediatric Abilities Clinic. You meet with a bunch of therapists and doctors and they evaluate Jordyn and then recommend what therapies and other resources we should look into. We did something similar to this in Billings, but that was when Jordyn was less than a year old, I think. The P.A. seemed to think it would be extremely beneficial, so we will check it out! He also wanted us to see a Developmental and Behavioral pediatric specialist. He said that they can help us continue seeking a diagnosis for Jordyn's developmental delays, if there is one. And they can help us with the behavior side of Jordyn's problems. I am very interested to see what they have to say about her behavior. It seems like it has taken a turn for the worse the past 4-5 months. She is very irritable and continues to pull her hair out and kick herself when she is mad. I am wondering what their advice will be to help stop that! But, I am also worried they will want to put her on medication for it, too. I guess we will see.

So, that was about it for our appointment. I felt good about it after I left. The doc. seemed like he really wanted to get to know Jordyn. I am always happy with appointments as long as they have something new for us to try or someone new who might be able to help us in a different way. Now I have to work on getting Jordyn enrolled in school and therapy and setting up more appointments with other doctors! I think our month and half of doing pretty much nothing is officially over! I guess I better get back to work...

3 people who like me:

Jenny said...

Sounds like you just got yourself a full time job! But Jordyn couldn't ask for a better advocate for her medical needs. It sounds like you have a lot of great opportunities for care in Idaho!

Susan said...

Wow, sounds like there are a lot of resources there, that is great.

Side note: Tonight I took the girls down to the Centennial trail to run and Elizabeth said, "We going to meet Emmy there?" She still hasn't forgotten!

Maria H. Andersen said...

I know it's not appropriate for a child... but I have this picture in my mind now of Jordyn wearing one of those plastic cones that we put on the dogs when they are trying to bite their hair out. You did wonder what they would suggest to solve this problem!