Tuesday, January 26, 2010
Occupational Therapy Adventures
Maddy had her official occupational therapy (OT) evaluation today. There will be more testing as we go along, but we got a baseline of where Maddy is now, and what issues are most concerning and have the most impact on her life. If nothing else, Maddy clearly demonstrated her wide variety of texture issues, and how they impact her eating and clothing choices. She also did a great job of showing off all of her favorite tricks.
Maddy was great at showing off her choking/throwing up trick, and was even kind enough to wait until she had tried most of the things Tosha (the OT) wanted her to try before throwing up all over the high chair and floor. We are going to be limiting her eating to long pretzels and freeze dried yogurt for at least another month, and hoping that as we work on other texture issues that her aversions to blended things may fade. The long pretzels will help to move her gag reflex back some, and the freeze dried yogurt should be a fairly "thick" liquid to swallow by the time it is going down her throat.
We will also be trying to build on her "naked time" by having smaller amounts of it more times during the day. That coupled with the brushing protocol may help her in the long run, and if they don't then it will help us with labeling her more accurately for long-term services. I will be teaching Michael, Anna (Maddy's favorite babysitter) and probably my parents, how to do the brushing protocol. We will start it after Maddy is over her cold, since it is not going to be pleasant for her, and it needs to be done approximately ever 90-120 minutes, during her daytime hours. The hope is that Maddy's nervous system will start to integrate more through the protocol, and that by the time the two weeks are done, that Maddy will tolerate more time without being fully covered by clothing. It may or may not help with the texture issues with her mouth, but occasionally it has helped some, so that would be a bonus!
In the "good news" category, Maddy is most definitely WAY ahead in almost all of her skills, as long as they are not eating related. She test at close to 19 months with many of her verbal and recognition skills. Her fine motor and gross motor skills are anywhere from 3-9 months ahead of her gestationally adjusted age. (Since she is still under a year old and was born more than 3 weeks early, they still do a gestational age, although they said she was way ahead even without doing that adjustment.) She was able to demonstrate every skill on the list for a child her age (she demonstrated the eating skills, but only to the extent that she refused them or gagged/threw up while doing them) and all but one on the list for a 1 year-old. She had almost half of the 18 month-old skills already, and Tosha was truly impressed. She even had one 2 year-old skill. I hadn't realized that the way she interacts with herself in the mirror was unusual, but apparently it is one of her most advanced "tricks." Who knew?
By the end of the visit, Maddy was exhausted. Having a cold and being congested didn't help any either. She fell asleep in my arms on the way down to the van, and only woke up a few miles from the house, when she heard a Taylor Swift song on the radio. I am still amazed at how much she loves music in general, and Taylor Swift in particular. I guess we are going to have to get her a Taylor Swift CD for her birthday. (If anyone has one they aren't using or have gotten tired of it, I would be happy to buy it from you.) I guess I can be grateful that it isn't Iron Maiden.
It was good to get the information and know a little more about where Maddy is at. Tosha says it is going to be more of a struggle getting Maddy to change some of her habits and preferences because she is so darn smart. I am going to include in my prayers every morning and every night a request that the Lord help Maddy to be more flexible, and that He help me to be patient and open to His inspiration on how to help her. I would be grateful to anyone else you would like to join me in petitioning the Lord for those things.
While there will be lots of joy with Maddy, this area of our lives may be an uphill struggle for all of us. That makes me even more grateful that Maddy is doing so well in other areas!
(Thanks for letting me do a little bragging about Maddy in this post. I know that every child is special to their parents, and all children have their own pace in developing different skills and talents. I try not to compare Maddy to other children, because she is unique, and I don't want to become too proud when I think of the ways she is ahead, or too depressed when I think about the areas that she struggles in. I know that Maddy is simply herself, and as her mother I need to support her in the ways she is super-fantastic, and help her move forward in the areas she struggles. All of that said, it is really nice to hear that even though she needs most of her food through a feeding tube, and she throws up regularly when we try to feed her, she is also a SUPER STAR in other areas. It makes my day a little easier too.)