Wednesday, July 28, 2010

Mary is a a busy girl!

I have time to blog this summer since I am only working a few days a week. I decided I would fill you in on all the services and activities Mary does.

On Mondays, her nurse arrives early in the morning before we wake up and starts her medications, including nebulizers. She also disconnects her feeding pump checks her vitals. Therapies start with Occupational Therapy. Mary loves her OT! She also has special education and physical therapy on Mondays. Mary's nurse leaves when I return from work and I take Mary to Hippotherapy - her favorite part of the week! She rides on Scotty, the pony for 30 minutes to work on stretching and trunk control.

On Tuesdays, the nurse arrives for the same morning routine. Speech therapy begins with Mary today and they work on using the DynaVox. Mary then has OT and music therapy. Mary has vision services for an hour to work on strengthening those muscles. I arrive home and her nurse leaves. Mary then goes for pool therapy.

This summer, Wednesdays are fairly light for Mary and she only has Speech therapy and Special Education in the morning. She also has her Assistive Technology Consultant come to work with her on communication techniques. I stay home on Wednesdays and do all of her nursing care.

Thursdays, I am back to work, so the nurse arrives early for a.m. meds again. Mary has her third Speech therapy session for the week and begins her busy day. Mary also has OT, music therapy, and PT on Thursdays.

Fridays are very light - she only has PT in the middle of the day! Sometimes she has a nurse and sometimes she doesn't.

In August, we are going to a bunch of doctors. We have appointments with Neurology, Genetics, Orthopedics, and ENT. We already saw Pulmonary and G.I. this summer. The wheelchair vendor was out a few weeks ago, as well.

Busy, busy, busy!!!

Saturday, July 24, 2010

Summer Update

It has been a busy July here! Mary is continuing to use her DynaVox and is doing very well! Her speech therapist and assistive technology person from school are writing justifications for her to get her own, with a wheelchair mount and other accessories this fall. Mary is able to answer yes/no questions, simple comprehension questions, talk on the phone with her grandmother, play pretend with her pony, tell us how she is feeling and other things with this device! It is fantastic! Mary always tells her nurses what she wants to do during the week by using her DynaVox and making choices.

In other news, Mary attended Vacation Bible School at church and Love Love LOVED it! We wish VBS was all summer long! Here are some pictures of all the fun she had.

most fun bounce house ever!!!
Mary also has a couple of little girlfriends she has been playing with this summer.  Nikki and Julianna have had a few playdates with her and it has been fun.  She has enjoyed playing puppies with both of them.  Mary has a switch operated puppy and a remote control puppy, so it works well when there are two kids.  She enjoyed swinging on Nikki's swingset and I feel guilty that I haven't hung her swing yet.  Julianna got Mary into dolls a little.  Mary likes her Dora doll best, of course!  Just yesterday, Julianna and Mary put on a "bouncing show."  It was cute.  They were bouncing and stopping - that was the whole show!  Kids are funny - they loved it!

Friday, July 9, 2010

Talking to Nonnie on the Telephone

Mary talked to her grandmother on the phone tonight! She told Nonnie about getting a pony and how she plays with him. Then she used her photo pages to tell Nonnie about other things in her life! Nonnie asked some yes/no questions and Mary answered them. I need to add greetings and an "I love you" to a page so that Mary can answer more than 'yes' when Nonnie says those things.

Oh yeah, Mary also figured out how to close a page that she navigated to mistakenly. She waits to hear the cue 'close.' I am so impressed with her!

Thursday, July 8, 2010

Mary got a pony

Well, not a real pony. It is a stuffed animal and she took to it immediately! The first thing she did was pet it's nose. Then we got her Dynavox out and I asked her some yes/no questions about it. I found out that this horse is a boy. The horse she rides each Monday is named Scotty, but she told me that she did not want to name this horse Scotty. I suggested Spotty and she said "yes." This is one way she plays with Spotty using her Dynavox.