Moving Forward

Well now that I’ve had a chance to process all of the newest information and get back into my happy place, I can talk about where we are in Ryder’s Road to Recovery!  Buckle up, it’s a bumpy ride!

Work: The first thing that was bothering me last week was the fact that I really wanted to cut back my hours at work to give myself some breathing room.  It would be nice to not have to rush to/from appointments all the time and actually have some time to think about our next move before making it.  Unfortunately, I didn’t get my way, and the only solution we were able to come to was for me to use FMLA (the family medical leave act) to take leave to get Ryder to his appointments…nothing extra!  Rush, rush, rush (no breathing allowed).

Insurance:  The insurance company is not budging on only giving us 90 days of therapy per condition, per lifetime, and they called last week letting me know that August 20th was going to be the official end date.  Thank you insurance company for being so thoughtful and understanding.

State:  I had to make the tough decision to go ahead and file for Medicaid for Ryder.  We make too much money to qualify, but there is some ECDC waiver that we are desperately trying to get him approved for.  We are currently on the waiting list for an assessment but I have filled out the 500 pieces of paper it requires…so now we just have to wait.  If he gets approved (please pray that he does) it will pay for everything our insurance doesn’t cover: co-pays, out of network providers, THERAPY!!!  This means he would be able to get all the therapy he truly needs and it would be paid for.  They will even retro this for the past 3 months and we could possibly be reimbursed some of the expenses we have paid…let me tell you, $40/appt adds up fast! 

Therapy:  This was probably the hardest thing that I’ve had to deal with thus far, we had an Early Intervention therapist coming to our house once a week since Ryder was 9 months old (as you all already know).  I was up front with them and told them that my Insurance was only going to give Ryder 90 days of private therapy so I sought out additional services and I was very excited to see how all of the therapy (the old and the new) was going to further his recovery, blah blah.  Well, would you know that I got a call from their office saying that they would not agree to see Ryder anymore because they don’t take the “more is better approach”.  Yes, these are the same people that have been here with us every step of the way, they are the ones who told me I needed to get a diagnosis, were there when I got it, helped him learn to sit and crawl and taught him sign language and laughed with me and cried with me and I welcomed them into my home!  And just like that, done.  And they haven’t been back since.  I’m sorry, but I thought we were all working towards one goal, to help Ryder, how could more therapy NOT help him?!  Look how far he has come with just the one session a week!  They said I had to make a choice, them or Children’s…and as you can see I chose Children’s.  I hope I did the right thing.

Count to 10 (1,2,3,4,5…) Breathe….Okay, I’m back to my happy place.

As I said, we are moving forward!  I really believe that I made the right choice for Ryder.  Yes, it was convenient that they came to our home, and yes we were already so comfortable with them.  BUT, they only offered one session of OT a week.  At Children’s he has Occupational Therapy AND Physical Therapy and was recommended for 4 sessions a week.  They have all the latest and greatest equipment and resources and Ryder LOVES it there.  He starts screaming “play! play! play!” from his carseat as soon as we pull into the parking lot.   AND, we got accepted into a therapy center that is closer to our home (it’s now a 1 hr drive instead of 2) and absolutely love both his Physical Therapist and Occupational Therapist that we will see regularly on Thursday’s and Friday’s.  They are so good with Ryder and he has come so far already in just the few weeks he has been there. 

The first week we worked on climbing, and…see for yourself:

Yup, we have a climber!  And since he mastered that skill we have been hard at work on walking!  Here he is pushing his stool down the hall with his therapist to get to his bowls of goldfish:

 

How cute is that?  They are so good with him, it amazes me!  And it works!  This was him at Nana’s house on my lunch break yesterday:

How’s that for moving forward??  I’m speechless watching him progress this fast.  I have to give a special shout-out to his daytime therapists Madeline & Cameron (as seen in the video).  Having them at Nana’s for the summer is really giving him that extra motivation to get up and get moving!  He wants to keep up with them so bad and they really push him…I think by the end of the summer we just might have a walker! 

So as you can see, it’s a rollercoaster, we’re up and we’re down, but I wouldn’t take back one second of this crazy ride because it’s all for my little rockstar who is having a blast and loving life!  As long as we can keep moving forward, I’m good! ;-)