Sunday, July 18, 2010

Say What? Surgery?

Say What? Surgery?
Aimee, my granddaughter, has cerebral palsy. I’ve been her medical guardian for some time now for her disability-related medical care. Over a year ago it was suggested by several doctors that we consider a baclofen pump for Aimee. This option was thoroughly considered years ago and decided against. But now they do a trial first so we reconsidered the option for an intrathecal baclofen pump (a medication delivery system for the treatment of spasticity). 

The decision to proceed was made but the process has been another thing.  Months of doctor visits and evaluations by pediatricians, psychiatrists, neurologists, neurosurgeons, orthopedists, and therapists---all concurring that Aimee would benefit. Then there were x-rays, a spinal tap, and MRI’s requiring an anesthetic. Once again, concluding that Aimee was a candidate.

Finally, her parents and I evaluated the facts and made our best decision to move forward with surgery. But then...what? We would have to wait for a surgery date---weeks, maybe months—because it’s an elective procedure. “We’ll call you” they said....and the waiting began.
In the beginning I agreed to take Aimee to all her visits and provide her post-op care since parents both work.. It’s been a challenge for Aimee and she has been a champ through it all. Often verbalizing her fear and trust in me. To the best of my knowledge, I haven’t let her down. I’ve supported her through it all while trying to make it fun and interesting to meet new people and experience new things.
The surgery is Tuesday. We just finished all the pre-op appointments and tests this week and will enjoy the weekend before heading to Oakland Monday for an overnight in the hotel to get to the hospital early Tuesday morning. Aimee understands the surgical process (I’ve been brutally honest) and how the “pump” will benefit her. She’s eager to be able to do more. Last night she told me she would like to “take dancing lessons or play an instrument”. Why not dream? She’s thinking of new possibilities for herself and I support her all the way.

She deserves something special to look forward since her camp week had to be cancelled.  Her surprise, after surgery, is a new iPad I’ve set up for her with music, books, videos and games. She loves technology and is eager to learn and do anything new.   I think will be able to manage this, and it will be a great opportunity to get her hands working.  I’ll keep you posted on it all.
Meanwhile, keep us in your prayers!

Julie .

Friday, July 2, 2010

Say What? It's 4th of July weekend...let's get physical!

This long weekend is the perfect time to enjoy at outing at the beach, a park, a picnic with family and friends, or simply a BBQ at home or day by the pool. But in all the excitement and planning let’s not forget to include something special for our children with special needs. Their day can be boring if they are not included in the fun and games.
A trip to the park with nothing to do is not amusing for a child with special needs.  Sitting in a wheelchair watching from the “sidelines” is not fun. Being excluded and isolated is monotonous and boring.   Most parks do not have appropriate surfacing or adaptive play equipment for a child in a wheelchair to enjoy. Picnic tables are often inaccessible. But, even so, there are other activities you can plan to do.  So get creative and think about what you can do to make your child enjoy the day too.

With a little imaginative planning ahead, and perhaps some “adaptive” equipment of your own, children can participate in the fun and games together.  Consider teaming up to play baseball, basketball, volleyball or soccer. Perhaps you’ll need a softer ball; maybe a plastic bat; or a large rubber soccer ball that can be kicked from a wheelchair. An able-bodied child or adult can easily assist so that all can participate and enjoy competing together in a game.

Water sports are always fun. If you child has limited swimming abilities, consider a trip to the pool store for a variety of flotation equipment and select what works best for your child’s abilities. A ride in a boat is always great fun; but be sure to use a life-jacket at all times---even in a simple paddle boat.

Going to the beach? Most of the state parks have adaptive wheelchairs with large tires that can be checked out for free at the ranger station. These chairs are wonderful and roll along the sand easily. We also carry along Aimee’s adjustable bath chair to use like a “lounge chair” when we take our granddaughter to the beach. It works perfectly and permits her to sit on the sand and enjoy the activities right along with everyone else.

Our children already have limited physical education at school and often miss out on the opportunity to compete in sports. It’s up to us to get them involved, get them moving and include them in whatever activities everyone else is doing. Their smiles will make it fun for all!

If all else fails, how about a long walk along a beautiful trail as you identify items of interest along the way---maybe even make a collage of collected leaves, twigs, shells or seeds.  Whatever you do, of course, always consider safety first…and please don’t forget a hat, and sun-screen!