Leah and Ashton, bidets, and iPads!

[Guest guest]

First of all,I want to let Leah and Ashton and I am thinking of you every single

second...and praying for a peaceful journey. I can only imagine how difficult

this is. I don't know if Leah is reading the list right now, but one thing that

helped me was writing everything down in the days prior to my dad's death. I

didn't want to forget anything at all. Afterwards I complied them and just keep

the notes in a box and go through them every once in awhile, and while it can

make me still cry, it's comforting as well. Leah, please know that even the

" lurkers " on this board are holding you up in prayer and love,

I have to apologize...several months ago I asked about help with wiping for

Craig and received many good ideas...and I neglected to respond. I can't

remember if it was Craig or me that got sick...and then I just didn't follow

through. I feel terrible about that. I just re-read the thread and am

definitely going to order one of the units the you use with a regular toilet--I

think Sara recommended this. I'm pretty sure Craig will tolerate it. Many

thanks!

As for the iPad; Craig got one last year for Christmas and it has been GREAT for

him. " THE " group to join is on facebook " A4CWSN. " It stands for Apps for

children with special needs. You can see demos on their website (they are on

the web as well as FB) of actualy apps being used before purchasing. Also when

companies run special promotions, they are listed on the A4CWSN facebook page.

I have gotten some amazing deals....One was SonoFlex which is an

aug.communication app, regularly $99 but was on sale for $2.99 for one weekend!

Craig often takes his iPad places where he might have to wait a long time. One

of my favorite apps is " Timer Plus " --I can quickly type in anything, for example

" Keep bandaid on " and then the time needed, like " 60 minutes " and it counts down

for him. He loves it and it really helps him wait. Sometimes when he knows he

is going to have to wait for something, he'll bring me the iPad and ask for the

timer app.

Donna, I am so pleased that Maddie has made a wonderful transition to Melmark.

I can only imagine how difficult that decision was, but know that for Maddie's

health it was definitely the best decision. You are so fortunate to live close

by and have staff that you love and trust. At 25 Craig is still home with

us....and doing ok....but having him move on some day is always on my mind. My

daughter wants us to keep him at home as long as we can and then for her to take

him. I have mixed feeling about this--above all I feel proud and grateful that

she wants to do this, but am not sure I want this life for her. The other very

difficult part is that she had breast cancer when she was 25, and although her

stats are very good, I fear he could outlive her. (just writing that makes me

sick to my stomach). For now I guess I am burying my head in the sand. Craig

has gone to Helping Hands camp for many years (they are out of Bechtelsville)

and they have a few groups homes and I do trust them implicitly. I am just not

ready to take that step yet, but I don't want to hold Craig back because of my

fear.

Yikes....I've really rambled on; I read the digest every day and just lurk in

the background, but I do keep everyone and their children close to my heart

every day.

Bev mom to Craig, 25, Magenis Syndrome, and Jess, 28, behaviore

therapist for the ARCH of the Lehigh Valleu