Tuesday, December 10, 2013

First Day of Therapy

Ryan had her first day of therapy today. It went both good and bad not as good. I am glad I listened to my "momma gut" and scheduled her for therapy. I really thought something was wrong, but at the same time expected to walk in and have the therapist say something along the lines of "oh, this is no big deal, we can fix that fast". That wasn't exactly the case. Ryan has started standing better, but we noticed with her left foot she stands with the top of her foot on the ground like before or on her tip toe, with her right on the ground flat.

The therapist felt her legs and noticed that her left side is very tight all the way up her back down to her foot. She doesn't know if this is tight because of her scooting or if she scoots because it is tight. She said her left leg is shorter than her right leg - which may be due to tightness, or maybe because she doesn't put weight on it (because bones grow when they are used and have pressure put on them). The therapist is not as worried about the leg being shorter yet, she feels this may correct as she gets the tightness out. The look on the therapists face scared me when she asked me to lay her down flat so she could watch her sit up and I told her she cannot sit up and when she wanted to see her roll over and I told her she rarely ever rolls over and that it takes a while if she ever does it. I knew that wasn't good, but even not knowing this therapist I knew that look wasn't good.

Another thing the therapist didn't like was how much Ryan sleeps. She goes to bed around 8:00 p.m. and sleeps until 7:30 a.m. through the week (I wake her) and 9:30 a.m. on the weekends. She then will take a 3-5 hour nap, depending. She said that is too much sleep and laying around - I just assumed if she was sleepy, to let her sleep (the whole never wake a sleeping baby thing). Well, she said 2-3 hour nap max and to get her up and going after that. She said part of the reason she thinks she sleeps so much is because she cannot sit up and move around or play in bed so she just goes back to sleep.

She plans to "hit her hard" with lots of therapy at first to try to get her caught up and get started on Myofascial Release to help get her left side loosened up. I have a feeling Ryan is not going to like this very much, but as her mom I have to push her and get it done. She will thank me later :)

Another thing the therapist was concerned with was her gagging. When Ryan was born she had what they thought at the time was a seizure - but it turns out she had gagging episodes that resembled seizures. This happened again at her daycare (she stopped breathing for over a minute this time). After that, it didn't happen to that extent again and her stomach matured and she only gags now if I put to much food on her spoon when I help feed her. The therapist said this could be a sensory problem that required occupational therapy, but said we could wait on that if we wanted. I chose to wait, I don't feel this is a big problem. She eats all kinds of textures but just gags easily if she gets too much in her mouth, as anyone would. Hopefully nothing ever becomes of this.

For now, we are waiting on the therapist to complete her paperwork and send it to her doctor and get her test results back. The therapist warned me that her scores will be very low - and I am glad she did. Ryan is perfect and will walk, this is just a little bump in the road. But, no one wants to read things telling them their child is slow or delayed - so I am glad to know this is a "standardized test" and not to hold too much weight to it.

So, if you can, please keep Ryan and all of us in your prayers as we start this little journey. I am not asking for sympathy or help (we are blessed to be able to see a therapist and get help, others are not so lucky and do not have such good odds) - just send some happy thoughts our way as we help our little miracle get on the right track to not just walking, but running :)

2 comments:

  1. Hi, I don't know you, I just happened to see your blog shared on facebook and I wanted to share our experience with you. My daughter has many of those same symptoms, plus a few more (sensory processing delays, social adaptive skills are delayed), She was evaluated and I was shocked to learn that she was severely delayed in areas I did not even realize she was struggling. We began therapy when she was 2. Her symptoms were kind of all over the place and could never be pinpointed as a specific neurological disorder, such as autism, so we began ruling out structural causes. I remember sitting in the exam room with her neurologist and seeing that very same look you described on her face. She had noticed that there was a particular skill that neither of my daughters could master. She ordered a Cytogenomic Microarray Analysis (CMA). It is a blood test that shows the complete structure of chromosomes. Unlike the FISH, it shows even partial deletions or duplications of a specific chromosome. It turned out that she has a partial duplication of the p leg on her 17th chromosome. This is a fairly new test and there is not a lot of information available yet on these types of rare chromosome disorders, but finding out exactly which genes were affected and what they are responsible for has helped us so much! We were able to modify her therapies for exactly what she needed. In addition, it helped us with the gagging reflex and with some digestive issues she was having. Just wanted to share that information in case they recommended you start ruling out causes, could save you a years worth of ruling out structural causes by starting there. Best of luck in your journey!

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    1. Thank you so much for sharing! I will look into this!

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