Selective Dorsal Rhizotomy. Her surgery is less than 3 weeks away. April 15th will be here before we know it!
To start the day, we met with the Physical and Occupational Therapists that will be working with her after her surgery and while we do intensive rehab work. They measured her range of motion and taped her walking with her braces and without them. Since they will be the ones to work with her after the surgery, it is important than they "feel" the before and after.
Next, we toured the rehab facility where Nina will be living for 3-5 weeks. She will have 3-4 hours of rehab work per day depending on how she is doing and how well she cooperates. This will be quite the time for our family, as we also have to pack up and get ready to move (more on a later post!)
We quickly met up with some friends at Mayo. Another little boy with power wheels!
After lunch, Nina got to take a pre-surgery class where she got to play with a doll and listen to the story of what will happen when she has her surgery. I think this was fantastic for Nina. I wish we had been informed of this option before she had her tonsils and adenoids out, and even before we did the last MRI.
During this class, Nina got to play with a stethoscope. She put it in her ears, and listened to her own heart. She was very quiet, and listened very intently. She listened, and she listened, and I could see in her face that a lot was taking place in her little mind. Eventually we had to ask her to stop so that we could continue with the role play and story.
"Did you listen to your heart Nina?" The teacher asked
"Yes, I did" Nina responded, "I could hear my heart... and I heard Jesus, I heard Jesus in my heart."
Both the teacher and I paused. Talk about a sweet sweet moment!
"Did he say something to you?" I asked
"Yes he did" Nina said
"And what did he say?"
"I love you Nina" She responded with a small whisper of her voice.
And I tried really hard to keep all the emotion in, because she is loved by Jesus, loved so deeply!"
"Well..." the teacher responded, "I think we just witnessed a religious moment right now"
I agreed it was a special moment, and I do wonder if Jesus does reveals some things to children, who have an open heart and ears to hear Him whisper "I love you."
After the class, we needed to pick up a script for Nina's prescription (medicine she needs to take for her rhizotomy). And wouldn't you know it, I saw a little boy with beautiful almond shaped eyes sitting on the floor. Of course I was immediately drawn to him, and his mom and I quickly began talking, because you know, the extra 21st chromosome brings us together. It is an extra family, and we have an instant, powerful bond that brings us together. Although Nichole was not there, I showed her off by pulling out her picture form my purse.
But that is not all! Little J was there along with one more friend! So I got to meet 2 beautiful little boys with Down syndrome and their mamas! And I liked them all right away! It doesn't take long to exchange e-mails and phone numbers when that extra chromosome shows up.
It also turns out, Nichole is not the only rascal out there. Now I am wondering if rascal activities are common in Down syndrome, for it cannot be coincidence that the nickname is the same!
Finally, after waiting for an hour for the prescription, we came back home.