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.)
4 comments:
Yay, Maddie! Sounds like a helpful evaluation. Yes, I will include "flexibility for Maddie" in my prayers!
This is really interesting stuff. When I was an aide at the preschool on campus there was a little boy in one of my classes that had some interesting food aversions. We found out about this one day when he was sitting at my table for snack. On that particular day we were having apple slices with peanut butter and marshmallows (or something like that). Anyway, the kid didn't want to eat them, but for whatever reason I kept urging him to at least try a bite. Finally, he did. His mom had been watching in the booth (1 way mirrors on one wall so the parents or merciless child development students could watch) and when she saw this happen she was elated. That was the first we heard about this. Apparently this little boy only ate things that were white. I don't remember the details, but I think it was basically like he would eat plain noodles, milk, and a few other "white" foods. Since the preschool on campus has so much access to specialists (from other colleges on campus) this little boy was able to meet regularly with a food therapist. I don't really know how that story ends. Anyway, while it's (I'm sure) a super frustrating thing to deal with as a parent, it's got to help that you and her doctors are aware of it so early instead of figuring it out for the first time when she gets to preschool. Hopefully by the time she's in preschool this will all be a thing of the past and she'll be eating a wide variety of stuff (well, of food--hopefully she'll stay away from buttons and things).
Thanks for sharing. My kids have really liked Celine Dion, so we got them a CD. Now they have tantrums if it is not on, and boy do we get tired of it as adults. So I would be cautious about allowing her to pick the music too much too early. I would just let her enjoy the Taylor Swift songs when they come on. I am glad to hear she is doing so well in so many areas. The others areas will come with time. And I really like what you said in the last paragraph. I think it can be allpied to all of us, no matter what our stage in life.
Maddy had her ESD evaluation today, with pretty similar results. She has a very uncoordinated suck-swallow-breathe pattern, which also is contributing to her problems swallowing. Whether that comes from the short pallet, or from thickening her milk to deal with the short pallet is really a chicken-egg question. Whichever one it comes from, it is part of her issues. That will be one of the first thing that her early childhood intervention team from the ESD helps us address.
It is nice that the ESD services are free, and they come to our house, instead of having to go into Portland. We will meet with the team for the first time in February, and set up her plan from there. I am really looking forward to having more ideas and more "eyes" on Maddy to help us work with her. Not quite as good as a BYU preschool Katie, but I think it is just what Maddy needs. :-)
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