Thank you to Weehawken High School for sponsoring Amanda during their annual talent show. Unfortunately Amanda wasn't able to make it to the event, but she was grateful that she is still so well thought of in her old home town. We all managed to make it to Weehawken for the Memorial Day Parade and Amanda got to see some of her old friends. It was a hot day, so we didn't stay too long, but it was a nice visit.

We learned this week that Charleen is moving back from Hawaii in July. She doesn't know this yet, but Amanda is planning another girls weekend for "the girls" at some point and Charleen is one of the girls! Amanda has missed Charleen so we're looking forward to her return.

MiMi Rosie continues to be a saving grace around here. She can single handedly care for most of Amanda's needs, Gabi's needs and help with household chores all at the same time. We have given her the next week or so off since she has been spending so much time here, but we couldn't be more grateful and we know she enjoys her time here too (we know you're reading this MiMi!).

We are in the process of scheduling an Assistive Technology evaluation- this would address computer access, reading and writing technology supports and accessibility for Amanda. We are excited about the possibility of Amanda being able to control more of her surroundings with the help of CP of NJ who will conduct the evaluation. We'll keep you posted on the outcome of that.

As for Amanda's siblings, Michael is getting ready for his high school graduation and then for college at Montclair State University; and Gabi is getting ready for the pre-school summer program starting in July. It's never a dull moment around here, that's for sure!

We hope that you are all staying cool and enjoying the summer!

Love,

The Callagy's

PS: (Check out some of Amanda's new pics in her photo album!)

May 10, 2007  10:10pm

Things have been relatively quiet around here, but never boring. Amanda suffered from a a minor virus last month, which was making its way through the house. She fought it like the trooper that she is, but not without a few scares for all of us along the way. Amanda has the will of a "rock" but unfortunately, her muscles are not as strong; including the muscles that help her cough, swallow and clear her airways. So something as simple as a little cough or cold can be very dangerous for Amanda.  We are just getting back to normal, but Amanda continues to be a bit more fatigued overall.

We have been trying to make some adjustments to her motorized wheelchair to accommodate the changes in her seating needs. She spends more time in bed so that her back and shoulders get the rest that they need until the chair is fixed. We are also working on getting an assisted technology assessment in our home through CP of NJ. The goal is to help Amanda be able to be more independent on her computer and throughout the house (including being able to turn things on and off with her chair controls) without having to depend on others for help.

Amanda's Dad returned to work in February. Since then, he has been working a steady graveyard shift, which has been challenging for all of us. Since Mike has no “time off” left, we are grateful to all of his "brothers and sisters" of PBA Local #15 who have so generously offered to donate a few of their days to Mike. This is a common practice in Police Departments throughout the state when one of the police officers is in a crisis situation and needs the time. Unfortunately, the Director of Public Safety has decided to dis-allow this practice in Weehawken.  We are hopeful that he will re-consider over time so that Mike can be here with us when things are a bit more challenging.

It's hard to understand how precious time is until you find yourself in a situation like this one.  Anyone who enters this house gains perspective about their own situation. To see what Amanda has to endure every single day and all of the dignity that she has had to give up, and yet she still continues to smile...I know for me personally, I usually forget about all of the challenges of my own day and realize how lucky I am and all that I take for granted. We hope that Amanda's struggle has enabled those of you who care about her to gain some valuable perspective about your own blessings.

In the meantime, we are very fortunate to have Amanda's MiMi Rosie here with us every other week to help us with our busy household. At 77 years old, MiMi can do more in a day than most people can do in a week. We are also so grateful for our Home Health Aide, Debbie from the VNA who spends several hours a day with Amanda. They have grown very fond of each other and are quite the dynamic duo!

Amanda is doing well with her home schooling and despite a few incompletes still, she is getting A's and B's in everything. Her teachers come for about one hour a week Monday through Thursday and they work her hard...because she's exhausted when they leave, but the activity is good for her mind, which is sharp as a tack!

Amanda has been getting out a bit more in the van and has taken a few trips to the mall with her brother Michael, which is always a special treat for both of them! We are hoping to find some way to give Amanda (and the rest of us) some type of summer break, but without vacation time for Mike, that may be difficult. We have set up the pool and are just waiting to find the right bathing suit to fit Amanda's needs and her good taste, of course!  MiMi Barbara is standing by waiting to place the order!

We hope that you are all doing well and staying cool. I will try to keep more current on the updates, but will at least make an entry on a monthly basis and more often if things change.