Well, I turned 30 this week. Kinda uneventful, but I am feeling a little old lately. My sweet brother Cas and his wife are babysitting this evening and Felt is taking me out for dinner. Although I am thankful for an evening like this, I would almost rather sit in my pj's and cuddle up with Andrew watching tv. I guess I was never big on going out.
This week has been a little crazy. Andrew's attendant (and she is just an attendant not a nurse, not that it matters) and I got into an arguement over her job responsibilites. It started when I wrote on a dry erase board that I wanted her to swiffer the playroom floor and put him on the potty every hour. After calling the agency, she agreed to the list, but soon after vented to my husband who then vented to me. Something about how I don't appreciate her, and I am not her boss, and she does lots of other things that she isn't suppossed to do. It took me a day to get over it but I was really upset by this because I appreciate every little thing that she and anyone else do for Andrew. I tell her everyday before she leaves that I appreciate her. Guess that doesn't count though. Just need to keep praying on this situation and pray that I can back down on my job and only have her here a couple of days.
Andrew is still doing well with the potty training. He wears pullups during the day and diapers at night and goes #1, and #2 when we take him. I thought we would have to sit on the potty for a while but nope, he goes within a few minutes. YEA for Andrew. My big boy! He is also going at school and with the attendant as well as therapists. Yea for generalizing this skill! We still have a ways to go and my hope is that one day he will walk to the potty to communicate that he needs to go.
We had a Dynavox representative come out last week after I called and nagged him about wanting to see the Eyemax device. I had heard from other Rett mom's that it is successful for their girls in communicating using eye gaze. Once the rep saw Andrew he said that the device would not work for him and suggested another device called the M3. He said that because Andrew is walking and constantly moving it just wouldn't work. We tried out the other device using an auditory scan method with a switch. He had to choose between food and music Boardmaker pics. I'm not sure he understood what to do because he kept hitting the switch over and over again. I filed a dream contract with the company and because I am an SLP I get to try the device out for 24 days. So, we'll see. I will keep everyone updated.
Another big yea for our boy- Last week I begged, really begged my boss with the home health agency to make an exception and bill our insurance company for OT, PT, and speech therapy even though they don't take our insurance. He talked with the COO and called me to say that they would accept Andrew's case because I am an employee. YEA!!!!!!!!!!!!!!! Our insurance only covers one clinic in all of SA for these services and that is a no go since he needs home health. Now he will get his ABA, OT, PT, and speech therapy. He will really be a busy boy, but the more the better for him. Man this takes off a big stress for me.
Rett Syndrome. One year Post Surgery
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