Apr 9, 2009


So today, I took Mercedes to the orthopaedic doctor, and he knew right away what her problem was. So tell me why we had to go down to Salt Lake City to Primary Children's Medical Center, for an x-ray and MRI, **twice** when all the while we could have just stayed here? Again, a doctor problem. Instead of what they thought was Juvenile Rheumatoid Arthritis, she has PatelloFemoral Pain Syndrome which is common among 12-16 year old girls because of their body alignment, knock-knees, and changes in their hips, etc., as they grow. He recommended intense physical therapy, and said it should go away by itself the older she gets. If not, she may have to have a lateral release. (Bill had that done too, in college, and I guess it can be genetic). Now we can breathe a sigh of relief and Sadie can start physical therapy with Ryder this Summer. We should just hire live-in therapists. That would make things easier. Why do we always have medical things happen to us?

The latest on Ryder: He was invited by Idaho State University to participate in a collaborative type of process (I can't remember the name) where the grad students evaluate him, study him and provide their ideas, input, and recommendations along with their professors. Last week Ryder had testing every day. He tested with the Psychology students, Occupational therapy, Social Work, Nursing, Audiology, Speech and Language, and the Special Education Students. It was a busy week.

Tomorrow we all meet together for the big Pow-Wow and get the results and recommendations and diagnoses. One of the grad students warned me that their might be some arguments concerning their thoughts/recommendations for Ryder, so to be prepared for that. She also warned me that the Psych professor will probably diagnose Ryder with MR (mental retardation) and not Autism. I will definitely have something to say about that.
I have issues with this certain professor already because five years ago before we knew that any of the boys had autism, we took Hunter in to him to be evaluated because this professor was referred to us by our pediatrician. He said, "No, Hunter does not have autism. He just has behavior problems and you need to learn how to discipline him." He totally disregarded anything I said about his sensory difficulties, and then pointed to Ryder who was a baby at the time, and said, "I'd like to test him for MR." I remember holding back the tears--being so angry and infuriated and helpless at the same time; it took all I had just to stay in that room. Sometimes you just feel so beaten. I don't want to turn into one of those people who get ticked off at everything because "life" has dealt them a hard blow. These struggles are helping me to be more assertive and not so passive all of the time. I think I am even gaining some self-confidence.

I'll blog more about what happens at the Pow Wow later. I hope I can sleep tonight.


  1. WOW! There is so much going on! I hope you rest tonight too. Good luck tomorrow, I'm anxious to hear how the Pow-wow goes. =) Try not to slug the professor if he gets too onery j/k.

  2. I've stopped over from MMB. Both of my kids were in the NICU. Also, they both had severe reflux and many related complications: aversions, dysphagia, projectile vomiting, delayed gastric emptying, failure to thrive, etc. My youngest is now 4 months and still struggling. Rather, I'm still struggling. She will get better, but it is difficult to have a chroncially ill baby and toddler to care for. Anyhow, I just want to express how proud I am of you (even though I don't know you). I wonder if I've been cursed to have 2 kids and both of them be sick. I should probably view it as a blessing that I was chosen to take these special bodies with my perfect spirits. I've had a hard night and seeing your story has helped me to feel like I'll make it too. Thank you for sharing. Good luck with everything and everyone.

  3. GL scheduling all that, but I'm sure glad you're starting to get some answers!!

  4. It is strange how we are changed through our children's medical struggles...I know I used to be kind of a pushover myself, and now I think at the nursing agency have a file under my name with a big ol' "B" on the front, and it isn't for "beautiful"...

    Good luck. Let us know how it goes and take that professor down!!




Ernie and Oscar learn they like different things-great for kids on the Spectrum!