Physical Therapy Evaluation

Sonya had her second OI physical therapy evaluation on Friday. As of now she is 19 and a half months old, 5 weeks post spica cast removal for a femur fracture and sitting up unaided as well as crawling. She doesn't crawl all the time however. After a short distance crawling on her knees (like 4 knee steps) she reverts back to her pre-fracture move that we call the hermit crab crawl/ scoot. This asymmetrical scoot is putting intense and immense pressure and weight on her previously broken femur and her OI therapist doesn't like it one bit! Sonya still has yet to attempt to stand up again and has even figured out how to get around the idea completely. The therapist tempted her with exciting toys stacked up on top of a short table as Sonya sat in a supportive chair set close to the table. The table was at the perfect height for Sonya to put her hands on and push up into a stand. What did Sonya do to get her desired toys you ask? Well, she shook the table until they fell down into her lap of course! She's just too smart for her own good.... We are now at the point where Sonya needs physical therapy weekly plus more water therapy. We will be getting Early Intervention to come and evaluate Sonya so that we can start receiving care through them. Now that our outdoor community pool is getting ready to close for the season we will also be getting a membership through the YMCA so we can go swimming (water therapy) daily.

I found out just how bad Sonya's femurs are looking today... Our OI therapist said that she looked over her x-rays to see what issues she would be looking for in Sonya before we came to visit. Her femurs are worse than the 90 degree angles that they were at before the femur fracture. They are just fractures waiting to happen and most likely will when she starts bearing weight on those little legs again. So, the topic of rodding surgery came up. I asked the therapist what she thought and she told me to seek a second opinion out and she confirmed my suspicions of our current orthopaedic surgeon being old fashioned and set in his ways about not rodding until the age of 3 years. Now I know why he didn't even want to discuss rodding with me and why he didn't show me her x-rays to discuss her degrees of bowing. This actually really infuriates me! I mean really, tell me the situation at least so that I can make the best decisions and seek out a second opinion and proper care for my daughter, even if you are against what early treatment she may really need. We have already started filling out the new patient papers for Kennedy Krieger Institute in Maryland where OI specialist Dr. Shapiro does rods on the younger OI kids. Hopefully I will be able to get Sonya in really soon for that second opinion! I also learned that if she does get rods inserted for support (splinting from the inside), that we should try to go for titanium instead of steel. With Sonya at high risk for scoliosis and kyphosis (already started) she may need MRI(s) in the future. Steel rods can interfere with the MRI machine and give inaccurate readings where titanium would not cause such problems. I'll be reading into this further of course for pros and con's as well as getting Dr. Shapiro's opinion.

So, this upcoming week is going to be super busy! This Saturday we are headed to my sister's new house for a house warming party, Sunday we are having her baby shower for her baby girl due in October, Monday is Zoe's first day of school and I have a parent teacher orientation to go to for Akela, Tuesday Akela has a meet and greet with her teacher, Wednesday is Akela's first day of school and Sonya's PAM treatment day, Thursday Sonya goes in for more PAM as well as Friday! Yep, one busy week! Geez, I'll have a ton to blog about! Hope you are all doing great! Hugs!

I posted a video above this post on Sonya's hermit crab crawl for a visual. It's from awhile back when she broke her arm but the style is still the same today. Please excuse Akela's brief butt crack exposure... That girl needs some hips! Enjoy!