Thursday, April 15, 2010

A School Day with Christopher and his new Diagnosis...

We are having a hard time with this new diagnosis!

Lately we have to wake up at 4:30am-5:00am when he does or he will kick his mouth guard out with his splints if we do not bring him down stairs to be fed. We try putting the TV on to entertain him so we can sleep a little more...but this is not working. (P.S. I also have to sleep with my legs over him so he does not injure himself at night). We are looking into a positioning system for his OWN bed!

My husband brings him down stairs (I can not carry him anymore) and gives him some meds while I make the beds and iron school clothes...I know I am picky! By then Ryan comes down and my husband feeds them breakfast which is great! Then comes the First I have to take his mouth guard out which is put in with Fixadent (cement!.... really!). I use a metal dental pick, tooth brush, denture brush and a hot and dry wash cloth to clean his mouth out. I feel like a dentist every morning! Then comes the wrestling match to change, bath and dress him with with the splints on. I have my husband help hold him down to do this and reposition the splints before dressing him. Otherwise I get kicked. He moves constantly when on the mat for changing because of his Dystonia. I then make his lunch. Once he gets in his chair for the bus he takes one more med and is his happy self again for the rest of the day. I am ready for

He goes to school and is doing great on the computer, unit time, therapy and interacting with his classmates. He gets home at 2:00pm and he watches a some TV or book. Then most days it is computer time for 1 hour. Then some play time with Ryan.

We are taking a small break from ABR therapy to concentrate on communication. With communication practice at home he is making choices by just looking at my hands. I will say right hand is yes and left hand is no or right hand is apple and left is orange etc. I make him look and touch his choice twice. I am going to go back to using my own photos of food, books etc so he has to choose between three items. I used on line pictures and symbols but they confused him. Sometimes the pictures do not even look like what they are suppose to. It is imperative eye gaze and touch pad training for all the new communication devices coming out. Which is exciting.

His brother plays well with Christopher which is great! He is also a big help! We eat dinner then Daddy plays with the boys until bed while I clean up and have a little chill time. More meds for Christopher then it is bed time.

It is the mornings I dread right now.....but then I look into those blue eyes and melt. It is worth it all. We love you our little buddy!


  1. I wonder if maybe you could apply for a nurse? Seems like he might need someone to watch him at night--you shouldn't have to sleep on top of him. Mama needs sleep too.

  2. My goodness Lisa, you are a saint.
    Thank you so much for making this blog for parents who can identify with you and for the many others like me who are so very involved our own lives. We need to remember that many people face difficulties every day.
    Christopher and Ryan are beautiful boys and I look forward to catching up with you all soon.
    Lots of love,
    H xxxx

  3. May God bless you and continue to rain his healing power onto Christopher and your family...JOEY