Thursday, March 22, 2012

Choosing The Best Therapy For Your Preemie (Part 2)

I'm Jack's #1 advocate.

I don't know why, but it took us awhile to realize that the buck stops with us, not medical personnel, when it comes to what is best for Jack. Many times with a medically fragile child, you just spend your days surviving. We were in survival mode for at least the first year of Jack's life. At some point, I sat down and counted how many medical specialists worked with Jack. It was ten. TEN! That's a whole lot to coordinate. And those ten people were spread out over a 500 mile radius. We spent so much time in the car. Some days it was a miracle that we even made it to our appointments. Because of our crazy schedule and Jack's varying priorities, we didn't have a lot of time to weigh the pros and cons of specific types of therapy or even if a specific therapist was a good fit. We didn't have enough energy to research online, much less take inventory on if our time was being used effectively. We were just cruising along, just trying to make it through each day.

At some point, when we finally had time to breath, we were able to reevaluate what Jack really needed. I learned some things.

1) You don't have to stay with the same therapists.

-There is no rule that says you have to keep the same therapist forever. Letting go of a therapist is never fun, but if you are noticing that no progress is being made or that your child and the therapist just aren't gelling, then I'm of the mind that it's time to look closely at the relationship and that maybe, it's time for a change. Initially when we started therapy, we were assigned therapists. It's sad to say, but it took us almost two years to realize that we could advocate for Jack and find him the best therapists possible. We were not stuck. And this is a very important lesson. A therapist has a very special relationship with their client. It is one of trust, safety, and motivation. If for any reason this bond is not strong (whether it be personality differences or an approach that is just not working), you as the parent need to take action. Ask questions and determine if the therapist is the right fit.

2) You can make up your own therapy schedule

It was just recently where we moved some of our therapies to twice a month rather than weekly. For awhile, it was just considered a given that we would have it weekly. Jack was getting burned out. We spent so much time working on feeding at home, then rushing to appointments, that it was getting to a place that was unhealthy. Jack didn't have time to be a kid. Four therapy appointments a week was just too much, many times with doctor visits added in. We needed to set up a schedule that worked for us. We now tell our therapists how much time we can devote to each therapy and we go with it. In a perfect world, we could devote countless hours to each therapy and then go home and work on different exercises each day. But that is just not reality for us.

Jack is currently working on four therapy areas : physical therapy, occupational therapy, speech therapy, and feeding therapy. We end up averaging two, 1 hour therapy session per week. That is about as much as we want in Jack's schedule. This allows us to do some intensives like we just completed with our 3 weeks of Constraint Induced Therapy, where we solely focused on that one area.

Part of this scheduling process is managing expectations with your therapist. Let them know how busy you are. Give them an actual schedule of your day. When Jack was exclusively tube-fed, he spent 6 hours a day in his bouncer chair, hooked up to his feeding tube. Once our therapists understood what our days were like, most were more than accommodating.

3) Keep an open mind about alternative therapies

Beyond the traditional three areas of therapy, there are countless alternative therapies out there. I get emails weekly about new techniques and medical advances coming on the scene. "Have you heard of ______ therapy?"  It takes time to research these out to see if they are legitimate and if they would be something worth trying. Some are, some aren't. Specifically for Jack's needs we have heard of Botox therapy, Stem Cell therapy, Hyperbaric Oxygen treatment, Anat Banal method, Cuevas Medek therapy, Constraint Induced therapy, Equine therapy, Hydrotherapy, etc., etc. This list could go on and on. If I'm honest, I will tell you that this is oftentimes so overwhelming. How do we choose? And even if we would like to try one of these, will insurance cover it and is it possible to be seen by someone in the western United States? Still, we keep an open mind. It was only because we sought out a hunger-based tube weaning program that Jack is now eating. Sometimes it is worth researching these unknown areas to find the gems.

It took us some time, but we now feel like we have a handle on Jack's therapy needs. It took a lot of trial and error. Biggest lesson? We as Jack's parents, more than anyone else, know exactly what he needs. One you figure that out, go with it and don't look back!
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2 comments: said...

That was an important realization for us too. Once I dumped Daphne's first PT, who showed up when he felt like it and made no progress toward goals, I never looked back. Now if I am not happy with a therapist, I ask for a new one.

Julia said...

I completely agree with you Jessi! Colin is currently receiving PT/ST from a great clinic near by... Now having said that.. While I am totally loving our PT and I feel like we are making no progress in ST once do ever!!! Now the upside here is that I am a PT myself and I can ask around about other clinics and ST in the area.. I am just waiting for Colin to be done w PT in the next two months and then I want to switch clinics.. The ST has been with Colin since the NICU but he just doesn't really connect with her and just seems more bored than anything else! Btw Jessi, how is Jack sans cast? Any more usage of involved extremity? CIT is really remarkable, it's shown to be really incredible as far as cortical plasticity goes in adults so I can only imagine how a kid would do!! Love Jacks pics!!