Saturday, April 24, 2010

Back to square one.....

The wheelchair rep came by and the X-Panda will not work for us. I am so frustrated I can't stand it. My first pick the Thevo Twist chair I want I can not find a rep to get it! The second chair the Kids Rock does not come in his size. Now this chair the X-Panda is sooo heavy I can barely push it up our ramp and he sits too high. Now what....??? I have two great reps helping me. However their companies do not work with Exomotion who makes the Thevo Twist. I am going to call Children's Hospital Monday and see if they can help me get the Thevo Twist to demo.

Wednesday, April 21, 2010

Anniversary flowers..........

Some flowers my hubby brought home for our anniversary...a little spring for the kitchen!

Monday, April 19, 2010

The Grandchildren....

Missing from the picture are David, Rachel and Ben Dennesen. That is Auntie JoJo hiding behind Christopher if you are wondering who's arm that is.

Sunday, April 18, 2010


Happy 80th Birthday Mom! What a great turn out! She was so Happy to see all her Family and Friends! (we missed the Ireland Clan as well as David and Jess)! Auntie JoJo, Uncle Jo, Auntie Cindy, Uncle John, Gregory and Kristen did a fantastic job decorating! Auntie JoJo worked hard to organize the party and Everyone did a great job helping with food and fun!
Nana and her sister when she walked in! More pictures to come....

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!

Saturday, April 10, 2010

New Ocean View!

Thanks to Dr. Silva (the kids pediatrician) cutting down some old trees we can see the ocean a little better now. We are across the street around the corner. The view is from back of our house,deck and sun room. The sun is out but it is only in the 50's today. Two days ago it was almost 90 out. New England weather has been crazy!!! Can't wait for spring to stay!!!

Friday, April 9, 2010

A Quiet but Fun Easter!

We had my Dad who is not feeling too well over for Easter dinner and had a nice day! We missed our family gathering in Maine at Auntie JoJo's house! We will be up to Maine soon for a visit!
The boy's really enjoyed the Easter Bunny this year...I do not know how they ate all that candy and food and did not puke!!! Thank God!
Christopher is doing well with the mouth guard and splints. I just wish we could get rid of the splints so he can play more. The second I take them off he wants to knock his mouth guard out and bite his lip...soooo frustrating!!! We are praying that a new drug study going on now will be promising for the self injurous behavior!