Jenny has demonstrated more improvments with producing voluntary sounds. She also is getting better at using a key board. She reads e-mail (if it is in a font large enough to see), but has only writen a couple. She wrote an e-mail to her mom two days ago that took 2 hours. It was less than a typical paragraph, but difficult as could be. She cried and wailed out of frustration but refused to quit until she was done. I have decided that we have not done as much as we use to do, so Jenny is aware that things will be stepping up. She agrees that she has not improved as much since we have been getting out more, and therfore not been home to do vigorous therapy. I am trying to include movement/therapy in all activites of her day.

Right now, Jenny is sitting next to me and working on her augmentative “speaking keyboard”. She did not know what to say, so I told her to write all the things she wanted to tell me, but never was able to. That was a huge mistake on my part. I realized I opened the flood gate of complaints that no man should ever open for his wife. “The tilt table is boring.” “The kids watch too much tv.” “I hate the therapy ball because it makes me drool and the spit gets on my hand.” It goes on from here for quite a while. She gets a kick out of watching me cringe as she hits the “SPEAK” button, and then laughs as I muster the strength to say, “good job Honey, keep typing.”

We did have another tube party to celebrate getting her last tube out. Like the trache party (where everyone had to wear a trache except Jenny) everyone had to wear tubes, except Jenny. It was a huge morale booster. She has been feeling like a burden to the family and a failure as a mom. After the party, she has been more positive about her contributions. She wants to be active in discipline, affection, and day-to-day raising of the kids. Little does she know (or want to realize), but she plays a huge role. The kids fight to see who sits next to her at dinner. We now have a schedule. Anytime she is on the ground doing therapy, she is attacked by a kid with love and hugs. If the kids are misbehaving, one ring of her bell can bring the kids to a stop more than what I do. They start defending or bring there conflcits to her right away, before and/or after she stops them with the magic bell. Even though I am a child therapist- she has taught and reinforced to me that parents over lecture their kids and there is sometimes power in her silence that allows the kids to work out their own problems (with occassional redirects by the bell). If she is not actively participating in the role of a mom, than I don’t know who is. Because of the great mom that she has always been, she does not feel like she does enough- but she never thought she ever did enough.

Jenny is feeling better from the tube removal. Her stomach was sore for a few days and she even took her first nap in years for a couple hours. She has been working with augmentative communication devices that speak what she types. She is good at it, but she is faster at finger spelling, so she is reluctant to use the speaking machines. Sign language does not require her to carry around a small computer, but finger spelling limits who she an speak to – mostly the kids. She did write several notes to the kids telling them how she felt about them. Plus, Zach has homework assignments where he needs to make words from a group of predetermined letters, so this offered a perfect opportunity for her to help Zach with homework for her first time. Being a past 2nd grade teacher herself, this meant a lot to Jenny to feel useful and to interact with Zach.

Of course, like most of Jenny’s things, everyone else used the communication devices more. We had to do several sentences such as, “Jessie eats worms”, or “Zach kisses girls” to make sure we really figured how to make it worked.

The kids have been really sweet with Jenny lately. They wanted so much to help their mom get better. Even our two-year-old Sophie makes sure to pray every time that, “mom gets better”. I gave therapy assignments to the kids to do specific activities with mom to help with motor skills. They involve puzzles, games, and therapy putty- so the kids are even more excited.

Last night, we had an aid to help out, so Zach became the first child to sleep with mom. Jenny needed this badly. They fell asleep holding hands and giving each other their special “I love you” hand squeezes that they have always had as their special secret way to tell each other that they loved each other. Zach is so sweet to his mom and loves her so much. The other day, Zach pulled out a bunch of his mom’s old sign language books and was diligently studying them. Jenny broke down into tears because she realized how much he wanted to communicated with her.