I wanted to give a quick update about Roa's botox treatments. He handled the injections very well. We have not seen any negative side effects. Actually, we have seen some very positive things- he is calmer, more attentive, sleeping better. He is unable to stand at the ottoman for as long as usual, his legs due seem weaker. He also is easier to place in a seated position on the floor with legs apart.
This morning, however, Roa woke up at 4:00am laughing, wiggling and giggling in his crib!! What is up with that!? It was hard to take that early in the morning, but I will handle laughing over screaming ANY DAY!
Now, for my thought of the day-
Yesterday, at ECFE, Roa and I were supposed to meet with the sales rep. from Reliable Medical to chat about adaptive equipment for someone Roa's size/age. Mary, Roa's PT, set this appointment up. Long story short, they were running behind schedule and Roa and I went to the Therapy Motor room to look for Mary. We met two of the other therapist who work for the White Bear Lake School District. They were nice and helpful in locating Mary and the sales rep. However, it was an interesting experience. Why,... you ask? Well, both of the therapist knew who Roa was. They said, "THIS is Roa!? HI! I've heard about Roa!"
Now, ...I know I shouldn't be paranoid. (I also know that Roa's therapists and teacher READ this blog, so I should tell them not to take this personally) but, it is weird to hear that people you just met have heard of your child.
My mind went to different places- Wow, they talk about Roa. Is it positive about how great he is doing? How aggressive his parents are in the fight for his development? Is it because he is cute, loveable, adorable? Is it because I am a ECSE teacher who was in a terrible car accident that might have resulted in his issues? Is it because I am a pain in the A*^ when it comes to questions and concerns? Is it because of his unique name? OR .. Is it because these therapists are preparing for the day that this "high needs" special child with cerebral palsy enters the school system and they will work with him?
I used to teach. I know that teachers and therapist talk. I also know that you DO talk about the kids with high needs that are coming your way. Yesterday, when these strangers KNEW Roa,.. I freaked.
I am so frightened for Roa's future. I ache to see him PLAY with other kids, TALK to me, MOVE on his own. I have stopped waking up and praying that today WILL BE THE DAY that he- crawls, sits, says Mama,... because it hurts when that special event doesn't happen on that day. I am being optimistic, yet realism has struck.
There is a chance Roa will not do these things as quickly as we like. There is a chance these therapists WILL work with Roa when he is 3 or 4 on these skills. But until that day, I need to hold on to the hope that our current therapies and interventions ARE the answer. They WILL make all the difference in the world.
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