Thursday, July 30, 2009

Waiting with Anticipation

You know that feeling you get when it's a few days before Christmas and the tree is up, the presents are wrapped and every thing is in place? You're so excited you cannot wait for the day to come. Well, that's kind of where we are right now. Our long-awaited "miracle" therapy is almost here and we are about two weeks from going.

I say "miracle" therapy because we are truly waiting for and expecting a miracle. God has made it abundantly clear that this therapy program is what he has willed for Travis. It has been humbling, and awesome, to watch his plan unfold and already I get goosebumps thinking about what He will do next. I am going to recap things, forgive me if you have already heard the story. It's just so awesome that I want to tell it again.

This thing all started Christmas 2008. Mom, dad and Mandy had seen this story on Good Morning America that they were really excited about it and called me right away. They happened to see a story about a little girl in Miami who had cerebral palsy and could not walk independently. She could use furniture to kind of "creep" around the room, but that was the extent. The focus of the story was about her mom having to leave for Iraq and while her mom was gone, her grandmother took her to this intensive therapy clinic and they taught her how to walk. When her mom returned (a year later) from Iraq, the little girl literally ran to her in the airport. It was amazing, and still gives me chills. I watched the story on the internet that afternoon and cried when I saw it. My heart leaped, that maybe we could figure out a way to give Travis an opportunity like this.

From there the search began. I acutally called the clinic that was featured in Miami and learned more about their program. The cost was expensive (too say the least) not to mention it was a 4-week program, in Miami and we would have to either stay in a hotel or somewhere like the Ronald McDonald House. While trying to figure out how it would work for us to go, we started researching "intensive therapy" a little more and lo and behold we found a clinic in Winter Park who did the same program and was about $4,000 less expensive. I guess God loves Google, because that was how we stumbled onto Innovative Children's Therapy's website and began to learn more about this new therapy. Considering there are only 90 clinics in the US that offer this intesnive suit therapy, and 120 worldwide, it's another God-thing that there happens to be one about 20 minutes from our house!

We consulted with everyone we could think of...doctors, therapists, etc. and kept getting good reports. Travis' Physical Therapist (Ms. Sue) had some kids who had attended the program, as did his Speech Therapist (Ms. Yvonne). All reported amazing results. Our neurologist (Dr. Kojic) had not had any of her patients actually go to the therapy, but was intrigued by it and is very encouraging at how she thinks Travis will preform and is excited for him to attend. Based on all we had heard, I made an appointment, and dad and I took Travis one morning for an evaluation (this was back in January). They assessed him and told us they thought Travis would be an ideal candidate for the therapy and we could see him attain goals like increasing balance, better walking patterns, even pedaling a bicycle! We discussed attending the program, and looked at it from every angle. I knew I wanted Travis to have this opportunity for his future independence, but I also knew it was very expensive. We already pay so much in medical and therapy bills, that I was not sure at all where the money was going to come from. We prayed, and prayed and prayed some more as to what to do. God put it on our hearts that yes, this was a chance we were going to have to take, so on faith I signed Travis up and believed God would help us find the money. Mom and dad believed whole-heartedly with us that this was what we needed to do, and they gave us the money for the deposit that was due at the time of the registration.

Soon after we filled out the paperwork and paid the initial deposit, our first blessing came. A generous donation, totally unexpected and out-of-the-blue, from an organization that Sean's Aunt and Uncle are a part of. Right away we knew, God was beginning to honor His promise. Next, I started getting a few new projects and jobs come in...totally unsolicited...and I knew again, God was making it happen. Sean received a nice bonus check from a job that closed out over a year ago, and we had kind of forgotten about, and we added that to the fund. Sean's mom and sister offered to organize a garage sale to help raise money and the Lord blessed their efforts by raising $2,000!! When have you ever heard of a garage sale making that much money?! Totally from God!! On top of all that, so many of our family and friends sent us money. I will admit, at first, I did not want to take the donations people were sending us because I totally feel this is our responsibility and I didn't want anyone to feel sorry for us. But, then I started to understand that these love gifts were from people who wanted to help Travis and give him the independence he deserves, and again I was humbled at their generosity and love. So, they charged my credit card this week for the remainder of the balance and I am proud to say that God delivered because we have enough money in our "therapy fund" to pay the bill. Praise God!

If all that's not enough to know God is behind all of this, how about a couple other "woven" together stories? Back in February, Sean and I attended a special needs fair that provided community resources and seminars for families of children with special needs. We all know how I feel about the public school system's attempt to meet the needs of special needs kids, so of course I attended a breakout session that discussed homeschooling. It was a great discussion, and I learned a lot. In the seminar, there was another mom there who was sharing about her daughter and she sounded so much like me. We introduced ourselves and began comparing notes and she shared that her daughter had been to Innovative Children's Therapy and they had seen some real success with it. We exchanged e-mails and phone numbers and I left thinking, I've seen her somewhere before. In correspondence after our meeting we discovered that she and her daughter were actually at the Innovative Children's Therapy the day I took Travis for his evaluation. We watched them finish their session as we were waiting for our appointment. What a small world!!!

The next exciting piece of the puzzle actually stemmed from some issues we have been having lately with Travis' behavior. For the last few months he's seemed to be more distracted than normal, and hard to get his attention. He also started showing some frustration in trying new things and transitioning between activities. We were at our speech therapy session a few weeks ago with Yvonne and she decided to put him on the swing and see what happened. Travis immediately became infatuated with the sound the chains made when he shook them, and it was hard to get his attention on what we were doing. Yvonne started asking more questions, and mentioned that he may have some sensory processing issues. I've always known Travis has had "sensory" problems. He sometimes gags at the touch of things like playdough, and texture issues are the main hold-back when it comes to his eating, but I never thought they were to the point where they were effecting him in other ways. Yvonne suggested we look into sensory therapy and see if he might could benefit.

I started researching, and the more I read the more I discovered it sounded a lot like Travis. I called a clinic here in Lake Mary that specializes in sensory processing disorder and got him in for an eval a few weeks ago. They determined that yes, he does have sensory issues and that they can help him learn to regulate his nervous system and the way he processes input from his senses. He started last Wed. with his first session, and we've already seen some changes as far as calmness and focus. In addition to helping increase attention and focus, one of the goals of this new therapy is to help desensitize his oral-motor issues so he can handle a wider variety of textures. Maybe this is the missing link we have been searching for over the last three years trying to help him learn how to eat food. God, how I pray, this may be the answer. It's pretty complicated, but if you'd like to learn more about it, here's a link to some great videos that kind of explain it better:http://www.cpdiscovery.com/index.asp?category=Sensory_Integration_Therapy

I am hopeful the next time I post an entry on this blog that Travis is walking completely independently WITHOUT the need for someone to hold his hand or follow him around in case he falls. I'm also expecting he'll be jumping, running, riding his tricycle, feeding himself and dressing himself like a "normal" kid. I pray God will bless him with independence and for the first time in his life give him the ability to play, move and grow "hands-free." How exciting that will be. If you want to see the kind of stuff he'll be doing at the intensive therapy, watch these videos: http://www.cpdiscovery.com/intensive-therapy-program-for-children-with-cp-part-1.html and
http://www.cpdiscovery.com/children-with-cp-benefit-from-therasuit-method.html

As you'll see in the video, this is going to be hard-work for Travis. He's going to be asked to do a lot, and he's going to be tired and sore. We would greatly appreciate your prayers for his attention, his stamina and his interest level that he will be willing and wanting to participate. I also want to pray for the therapists that will be working with him (Arianna, Dayna nad Trevor)that they will appreciate Travis for the miracle he is, have the wisdom to help him and offer loving encouragement.

I'm sorry that this post focused so much on the upcoming therapy, but it is really the main thing going on with us right now. I do not want to take away from Emily at all! She is unbelievable, prancing around here like she owns the place (and, really she does). She's talking all the time now and some of the things she says are absolutely hillarious. Lately she's taken to calling me "mom" (instead of mama) and Travis "Trav." The other night at dinner I said, Emily would you like something to drink? She says, yes mom. I said, what would you like? She says, Cup of milk, please. I said, a cup of milk? She says, yes, mom. Seriously, like she's 35 or something. It cracks me up. She's always very polite, though, and always says thank you when we give her something. She's so used to hearing me say "sweetie" or "baby" that she says it all the time too. She'll say, "Want some, baby" if she wants a bite or a sip of what you've got and she'll say "I'm sorry, baby" if she gets a boo-boo or gets in trouble. I promise, I will devote one of these entries to her one of these days.

The other exciting thing that happened around here was Travis' 4th birthday. We had an awesome party...I hired a Kindermusik instructor to come and she spent an HOUR singing, playing the guitar, dancing, and telling stories. The kids LOVED it and Travis had the best time. I think Emily enjoyed herself. She stayed in the kitchen hovered over the little snack tray for most of the party, but did manage to join the action when "Itsy Bitsy Spider" was being sung. I'll try to put some pictures up so you can see.

If you've made it all the way through to the end, here, congratulations! I'm almost done. The only thing I have left is a Bible verse that Sean picked out for us. I think it sums us up right now...

"Yet the Lord longs to be gracious to you; he rises to show you compassion. For the Lord is a God of justice. Blessed are all who wait for Him!" Isaiah 30:18.

Hallelujah! We have waited for a long time, and I think God is about to bless us with his graciousness. Thank you, God, for your compassion and love!

His humble servant,

Christy

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