**Cerebral Palsy is not a "sickness", you can't catch it, and it is not hereditary. The cause of cerebral palsy is brain injury or brain malformation that occurs while the brain is developing — before, during, or after birth.**
(Keep in mind my motto: If you don’t laugh, you’ll cry).
As a family, we have always found the funny in all situations. This was funny. Not so much when you think about the fact that she suffers from CP, but more the situation of it all. How ridiculous it looked to see us trying to bend her and transfer her from here to there. It was nuts.
We're still looking for that magic oil can!
We finally did it! Elise had her Baclofen pump placed in November of 2014. She has had it for about 4 1/2 months. At this time, since we are still working up to a dose that will benefit her spasticity, (it takes many months), we haven't seen a huge difference in her tone, yet.
I will spare you any pictures of the pump itself. Let's just say that it looks like Elise swallowed a hockey puck. Literally. It sits low on the right side of her abdomen. It looks incredibly awkward and uncomfortable, however, Elise has not shown any awareness that it is even there. (Thank goodness!) We are careful now when putting her in positions and holding her, that there is not a great deal of pressure on the pump. So far, no more tummy time! That was becoming pretty impossible because of her hips, anyway...
This is a recent x-ray of her hips. They are what you call hip subluxation. It is a partial dislocation of the hip- the ball of the hip joint is only partially in the socket. As you can see, her left hip doesn't seem to be in the socket at all. Until this causes pain, we will hold off on surgery. The surgery needed is INTENSE, so I am glad we haven't crossed that bridge yet!
In her Rifton, she can be wheeled outside, play with her switch toys, and be in an upright position.
This chair is AMAZING! We do not own this chair yet. This was a chair used for a trial run to see if it would be good for Elise. Before putting her in it, she was extremely spastic with some major extensor patterning going on in her bed... along with crying and whining. As soon as I put her in this chair, she got quiet, relaxed her body completely, and enjoyed herself for the next 30 minutes until the rep had to go. We hope to order this chair as soon as we can... (not covered by insurance).
Elise's positioning in her bed has become a major problem. Elise has become "windswept" in the last several years. Her muscles are pulling her over to one side, resulting in the beginnings of a curvature of her spine (scoliosis). As you can tell, this is only getting worse as time goes by... Being pulled this way leads to crippling effects on her joints, bones, spine, and muscles.
You can see the progression...
A couple of years ago:
NO MORE ROLLED UP BLANKETS, TOWELS, AND PILLOWS STUFFED AROUND HER IN BED! NO MORE COMING IN IN THE MORNING TO FIND HER TWISTED IN BED! YAY!
This was also just a demo. The bed is being ordered now. This is genius, and I wish I could have had it years ago for Elise.
UPDATE: Thanks to family, friends, and even strangers, WE NOW HAVE A VAN!!!
For more info, click... The Big Red Marshmallow