Sunday, October 25, 2015

End of October 2015

Here we are at the end of October! It went by way too fast for us. Jason and Laura are thriving and learning all of the time. Jason has begun to enjoy looking at books and will sit through a story (if you read fast enough!) In the beginning of October, he went over my Dad's house for the very first time while I went to hockey. We think Laura and her cousin were more excited than he was. But he loved riding in my Dad’s car.  He made himself right at home and had zero trouble at nap time.

Laura has been doing wełl at school.  The work has been challenging and she's learning how to overcome things that are more difficult. She's called me twice for good grades from school.  Laura is still reading away - sometimes one book per night. Even though I prefer her to sleep more, as long as she is pleasant in the morning and good grades - I'm not complaining.  Finding quality time with her has been a challenge. She has homework, science club, karate, friend time, her time, time with Jason, time with Jeff and all the grandparents want her on weekends! Just making the most of our mornings and evenings sometimes are all I can do. 

Jeff has been working hard at school and home. We also need to spend time together.  We were able to see some movies together. One at the theater called The Martian.  The other two at home when the kids were away. Jeff surprised me with Chinese and two different types of cheesecake for our home movie night.  The little things sure add up!




Tuesday, October 13, 2015

Zoob sparkle toys

Laura is nine and very into design plus building.  I like to always encourage this for her and look for toys that expand her imagination. I bought Zoob sparkle for her birthday and was simply delighted. It's a set of 60 plastic devices that interlock to make anything really. 

When she unwrapped the gift, she yelled,"cool!!" All the pieces are bright and colorful. You can design anything at no limits to the imagination.  Her two year old brother also loves them and can use them but a little harder for him.  I highly recommend. She plays with them almost everyday and her birthday was weeks ago. You can find it here: 
Zoob Sparkle

Dinosaurs Roar

Jason is two and a half still has his favorites when it comes to toys.  He still loves cars, but now he's getting more into dinosaurs! He has three bigger ones and now a book. The book is excellent with pictures plus sounds.  Jason has a hard time sitting for a story. So, books that has sound effects really gets him interested. The book is from Discovery and can be found : dinosaur book

The noises are realistic and he has a blast with it.  I highly recommend.

Thursday, October 8, 2015

Mammograms for women with disabilities

Several women with disabilities shy away from medical care that they need not because they are careless or want to be unhealthy. The problem is the reaction to our disabilities from medical staff and how accessible the facility is for someone in a wheelchair. These challenges make an already uncomfortable situation even more so or impossible.

Two days ago I went for my mammogram at Phoenixville Hospital. My attendant accompied me because I need help undressing/dressing and dexterity activities because of cerebral palsy. I warned her that sometimes people didn't always act as professional as they should but we get through it for my health. Being a mom of a nine and two year old, I want to remain on the Earth as long as possible.

My friend babysat Jason and we went. Dealing with admissions was easy and I actually felt like I was treated like an average 40 year old woman. I told my attendant that maybe it won't be as bad as I anticipated. We were escorted to the mammogram area. There were two technicians and a pretty small waiting room. One technician came out and asked me if I could remove my armrests if needed. I answered yes.  Then she handed my attendant a cover up and showed us the dressing room.

Sadly the dressing room was the size of a closet. Maneuvering my wheelchair and attendant inside was quite comical. She assisted me as we fumbled in the space.  I managed to get out of the room with smart driving.  I waited in the waiting room again trying to keep my cerebral palsy from opening the little robe and exposing myself to the room.

They finally called me in and I took my attendant. I did as they asked, endured the pain, was held still, counted to ten. This was my third mammogram experience and felt I was still the best. But the technicians whispered and disappeared leaving my attendant and I wondering.  Then they asked me to go back to the little waiting room which now had two other women.  Once again, I struggled to hold my robe together.

The tech called me back again and said she wanted a radiologist to see if the pictures were ok. I became nervous- did they find something?  I asked if all was ok and she said I possibly moved too much.  She said I could wait or leave. I opted to wait since she thought someone could look at it in fifteen minutes.

So back to the waiting room.  Now this is the most annoying part - she came back to the waiting room and looked me but motioned to my attendant to come. I went because it's obviously my body and she said that I should stay and only needed to talk to my attendant!! I said its my body and I'm coming in. It was bizarre and surreal. Then she proceeded to talk directly to my attendant avoiding me completely. She said that the radiologist could be a few hours and they'd call me.  I was so offended over the disrespect about my body. I couldn't believe it.

Yes, apparently they do need me to get mammogram again but I refuse to go back to the hospital. I'm going to try another facility and hopefully be treated like a woman and not a child. I told my doctor about what happened and am writing the hospital.

Next week ironically I'm going to speak to future nurses about how to care for people with disabilities. I hope my talks help them understand so people are better educated.