Archive for March, 2014

Special Day for Special Kids

Sunday, March 30th, 2014

Today was the annual Special Day for Special Kids at McCormick Stillman Railroad Park in Scottsdale or Phoenix. Beautiful weather. Lots of things to do. We started on the merry-go-round, which Maria LOVED! We took her out of the wheelchair and put her on a horse. Then we rode the train. Another fun ride! We got photos with the mascots for the Arzona Cardinals and Phoenix Suns (football and basketball for the sports-challenged).

Another big hit was the petting zoo. Usually we carry her in, but this time we took the wheelchair in so we could stay longer. Maria really loves to pet the animals and she was pretty gentle. We wandered around a bit then payed on the grass for a stretch, then hit a cupcake shop on the way home.

Poor Sabrina (respite) had cramps, so I loaded her up with my home remedies before she went home. I remember those days like it was yesterday.

I think this was my favorite special day out of the 4 or 5 times we’ve been there. It seemed more crowded and more things to do this year. But no Starbucks. Usually they give away coffee drinks. This year they had snow cones. Boo!

Sedated MRI

Saturday, March 29th, 2014

Maria had a sedated brain MRI this week. Maria has started puberty (as evidenced from a bone xray indicating her bone age to be 12, and blood tests) and we want to stop it for a while, so the MRI is to make sure the cause isn’t a problem with her pituitary gland. If all is well, they’ll put in an implant of some kind of hormone. Supprelin, I think it’s called.

Getting her to sleep was the usual, mask on the face with gas; not pleasant to watch, but I know she’s in good hands. Her waking up was something else, though. She started choking a bit on the tube in her mouth, so the nurse pulled it out right away, but then she kept freaking out for 10 minutes? longer? I don’t know. Usually she wakes up fairly calmly, but not today. When she finally settled down, she was fine, and we went home quickly, but it was a little unsettling for a while.

Maria made the honor roll again for the 4th quarter in a row!! The ceremony was at the same time of the MRI, so we missed it, but what a great thing! She’s really been doing great in school lately.

Debbie Waxman

Friday, March 21st, 2014

Today we went to a memorial service for Debbie Waxman. She was a beloved member of Maria’s team. We met her many years ago when Maria’s orthotist kept insisting we go see her. She did Jin Shin Jyutsu, a Japanese energy healing technique, which sounds like a bunch of hooey, but ended up being one of the best things we did for Maria. She was also an occupational therapist (fine motor skills), but not for Maria, and has a daughter with cerebral palsy, so she was able to provide me some advice. While she did Jin Shin on Maria, she put headphones on her with Therapeutic Listening tapes, which is a remarkable program that helps retrain your brain, helps kiddos become more verbal, many things. Several times throughout the years, when Maria got extremely congested, Debbie would do a “lung flow” and Maria’s lungs cleared up. Sometimes it took a day, sometimes it took a couple of treatments, but it worked every single time. We always went to see her a few times before Maria was going to have surgery, and Debbie came to the hospital to treat her after Maria’s hip surgery. I really depended on her for a lot of things, and I am just at a loss now…. Her brother gave a beautiful eulogy. I learned a lot about her that I’m embarrassed that I didn’t know about.

Before the service, we went to CRS for an audiology appointment, where the audiologist said Maria’s ears tested normal to mild loss in her left ear, but there was fluid behind her left ear, so the results aren’t completely accurate. She recommended another BAER (sedated hearing test), and an appointment with an ear, nose, throat doc because from what I recall, she always has fluid in her left ear–something I need to do some follow-up on and look up the old records.

After the service, we went to another Debbie’s house for a Jin Shin treatment. Debbie is the one who Debbie Waxman used to get treatments from, so at least we have a back up or a continuation or something. She’s big on having the family members co-treat. This was the first time that I actually felt the pulses! Wonder how much I’ll practice it at home…

Long day. Sad day. End of spring break. Back to school Monday.