A Little Background (or a lot)

Before I talk about the end of our journey, I really want to rewind and go over exactly how we got here.  Which, no doubt in my mind, was perfectly mapped out in God’s plan for us.

Ryder was diagnosed with Left Hemiparesis right around his 1st Birthday.  I immediately started searching to find out what his prognosis looked like and what treatment options were out there.  I came across a place in Alabama who had created the Constraint Induced Movement Therapy and had a center devoted to this therapy for children.  I reached out to them for information and found out the cost was $15,000 and not billable to insurance.  I kept it in the back of my mind as an option for Ryder, an option that would obviously be a difficult one to make happen for us.  I mentioned it to his regular therapist at Children’s and she put an offer out that she would be willing to cast Ryder and do a modified version of the therapy, which is how we ended up casting him at 1, 2, and 3 years old! She has since casted other patients and been able to help them with a modified version of the therapy as well.

So a few months ago, a friend of mine sent me an article from a local newspaper (thanks Sandy!) about a boy who had a stroke and went to an intensive therapy program at Kennedy Krieger, his parents were raving about the treatment in the article, saying how much function he had regained.

The next therapy appointment Ryder had that week, his therapist brought up casting, asking if I had thought about casting him this year.  I told her I was on the fence, and she said she thought he was ready for a more intense program, like the one at Kennedy Krieger.  I couldn’t believe this was the second time I had been hearing of it in a week.  When I got to work and googled Kennedy Krieger and saw that it was right in Baltimore, I was super excited!  I called to get some info about the therapy and planned to get him on a waiting list for this Summer if it was available. 

When the nurse called me back, we began talking about Ryder and our situation, I was super happy to hear that they DO bill insurance, but was then disappointed to hear that they didn’t take Virginia State Medicaid because it’s out of state and their rates are extremely high.  Luckily we have always kept Ryder insured on our private plan incase a situation like this ever came up, we always want him to be able to get whatever care he needs.  So she said she’d run it through our insurance to see what portion would be covered and she’d get back with me.  I hate thinking that money could be the deciding factor in situations like this, but realistically there’s only so much we can handle, so we were anxiously awaiting this call.  When she called her exact words were “you might want to call and double check this because I don’t see it often, but it looks like the therapy appointments will be covered at 100% because they’re being given at a facility.”  I knew it was true, because I could feel God guiding us down this path.  The next part, proved that.  Our insurance offers 32 Occupational and 32 Physical therapy sessions per calendar year.  Kennedy Krieger needed to bill for 26 of each.  The difference of the appointments were about how many we have already used this year!  Their team meets once a week so she was going to see if they could squeeze Ryder in so we didn’t miss this perfect window.  She said if I could send her video footage she could use that instead of having to schedule us an eligibility meeting.  Thanks to this blog, I was able to provide her with the video footage 5 minutes later!  She called the next day and said they thought Ryder would be a great candidate, they were able to fit him into the schedule, and gave me an admission date of March 6th, about 2 weeks notice.  This gave us just enough time to run everything by our work, find out that we got a room at the Ronald McDonald House, meet with Ryder’s teacher, and … go!

All of the rushing didn’t leave a lot of time for me to have anxiety about it, I just knew it was the right thing.  I definitely didn’t have time to mentally prepare for how hard it would be on us to be separated, it sounded so perfect that we would alternate weeks so one of us would be with each kid.  But being apart definitely took its toll.  During the beginning of our first week there, Ryder was having a hard time, and I felt like we were climbing very slowly up a big hill.  I started to realize that the Enemy was getting the best of us, we had been giving God all the glory for all that He had done, and now we were facing some trials.  One evening I had a particularly long day, Ryder and I were sitting in the dining room and I was texting Nicki saying, wow…this is hard.  When all of a sudden I could hear the tune of  the Christian song “10,000 Reasons” playing on the piano downstairs.  Mind you, we were told in a joking/serious manner during our tour of the house NOT to play the piano if we didn’t know how, and this was the first time I had heard anyone actually play.  (and the ONLY time for the whole month we were there).  It completely snapped me out of my funk and helped me to realize I was not alone in this, God was still in control and we would be just fine.

The next week, it was my week at home with Maisy and it was also Ryder’s birthday week.  We were really excited to go stay the night Tuesday so we could spend Wednesday with them.  But first, we had to get through Monday night.  FIRST OF ALL, let me say that the previous week, Daddy’s week, little miss made a new sleeping arrangement, in bed with him, on my pillow.  So Monday night was not a fun one for a Mommy trying to break a bad habit of a 2 year old.  So at 10:00 night when she came in my bedroom for the 100th time and reached her arm up at me and said “help me on the bed Mommy”, I finally caved, grabbed her arm, and went to assist her onto the bed. Only she fell and I pulled and heard some interesting cracks and pops and then there was my baby girl screaming on the floor.  A phone call to Aunt Brenda led to a visit from her and a Paramedic friend which led to me & Aunt B driving Maisy to the emergency room at midnight.  I thought she had dislocated her shoulder, but it ended up being her elbow.  We got home and in bed around 5am, then got up at 7 to head to work, I couldn’t imagine calling out another day when I had just been off for seven!  I still didn’t think her arm was 100% so I ended up leaving a half day planning to take her to Nicki who has experience with nursemaids elbow, but when Vicki dropped her off at my work, she was all better!  Which meant we could head straight to Baltimore for more time with our boys!

I actually got pretty good about driving around the city. At first I was terrified, but Ryder decided that he LOVED the city, so I got brave trying to go out and about and take him places.  (Seriously he says he wants to move to the city!).  I had another WOW moment in the car, well first of all, thank GOD I traded in my car!  There is no way my old car would have made it up and down the road like that, and there is no way I could have maneuvered Alan’s truck around there!  So in the first few days of driving my new car I was programming my radio stations.  I really enjoy listening to the Christian music stations, so I set the 2 stations we get, and then was using the “seek” button to decide what to put on the rest.  I came across this station that was really fuzzy, but it was playing one of my favorite Christian songs, so I left it on and listened, then another great worship song came on, and another.  If someone were in my car that day they would have thought I was crazy listening to this fuzzy noise, but I knew the songs and loved them so I was able to keep up.  I decided to program that station as my #3.  Would you believe that driving around Baltimore one day, I was clicking through my presets, 1…commercial, 2…didn’t like the song, 3…fuzzy station was not fuzzy anymore, it was playing one of my faves, and right after the song it said “95.1 Shine FM, Baltimore’s positive hits”! 

Sometimes God takes us completely out of our comfort zones, puts us face to face with situations we wouldn’t particularly choose for ourselves, and then shows Himself to us. What an awesome feeling that is, to know that the Creator of the universe cares about me and what I’m going through.  So much so that he plants little seeds of encouragement and hope to get me through.

Sometimes he sends that encouragement through friends & family, we were so thankful for all the cards, letters, emails, texts, packages, our Church Family was so good to us while we were away, what an amazing experience.

The timing of this whole journey couldn’t have been more perfect.  I had just completed a huge project at my Company that I would have never been able to be out of the office while it was going on, and it opened the door to a lot of work I could do remote.  The Occupational Therapy Association was having their annual meeting during that time and it just so happened to be in Baltimore, so we got to attend, speak, and MEET those people from Alabama who I had found in my research years ago!  Being at the RM House for the Red Shoe Shuffle was so amazing.  And for this to be done and out of the way as Ryder prepares to start Kindergarten next year.

It truly all happened in God’s perfect timing!

One more post to come about our last few days and some video footage!