Saturday, January 21, 2012

What About the Boy - A Father's Pledge to His Disabled Son

What About the Boy? is written by Stephen Gallup, the father who made a pledge to his disabled son to help him find wellness no matter what it took.

Joseph's parents were convinced that something was wrong him. He spent much of his time crying and while lying on the floor he would shake his head from side to side. Doctors and specialists told them that Joseph had a brain injury but that nothing could be done for him. 

Believing that it was Joseph's birthright to be well, Joseph's parents took matters into their own hands, rising to the challenge of enabling Joseph to live a life of wholeness.

For my complete review of What About the Boy click here. Read Stephen Gallup's guest post on my blog, Who Needs Sympathy?

Friday, January 6, 2012

Conscious Sedation - A New Experience for Our Brave Girl

I am so very proud of both Rob and Faith. I only wish I could have been there with them. Today was a new experience as Faith's medical providers used conscious sedation while administering her botox shots.

I was pretty bummed that I couldn't be there. January marks our busiest month at work so taking time off is limited. I already have to take time off on Monday for an appointment. So there I was this morning at work wanting to be with Faith and praying that all would go well.

Rob and Faith had to be at the hospital at 8:30. Faith's pediatrician was there, along with a few other of Faith's favorite medical providers. She was especially happy to see PBS playing on the television. Seeing something familiar helped to keep her calm.

Rob and I have struggled in the past wondering if conscious sedation was the right thing to do for Faith. It just didn't seem like giving her sedation drugs every time she got botox was very good for her. In the past during her botox injections, I would have to hold her down while they gave her the five shots in the back of her legs. It seemed to take forever and she screamed through the whole ordeal but when it was over she was fine.

For this round, Faith's doctors talked us into using conscious sedation. They said it was better for her, not just because it was painless but because Faith wouldn't have as vivid of a memory of the event.They also told us, she would not be completely put under like she had been with her feeding tube surgery and her phenol block.She had a really tough time after those procedures because the anesthetics really upset her tummy and we ended up having to stay at the hospital longer than anticipated.

Needless to say, today's event went much better than we could have possibly imagined. Faith didn't cry once - not even when they tried to put the iv in one hand then when that didn't work put it in the other. After giving her the sedation medication, Faith was very relaxed but not completely asleep. Rob was right there by her side praying for her the whole time. And before they knew it, they were back home.

I was a little stunned when I checked my e-mail on my lunch break and Rob said everything went really well and that Faith didn't even cry. I had to call on my 2:00 break just to make sure everything was still okay. Faith was happy and excited for me to come home so she could tell me about her adventure at the hospital. When I did get home, she said, "Mommy I was a really big girl at the hospital today." She has lots of stickers to prove it!

Here are a few new pics of our brave girl:

New jammies!

Faith getting ready for bed

Monday, January 2, 2012

Saying Goodbye...Again

Last month, we had a sad surprise - that Brittnee, a respite care worker who has been with us for a year and a half, was leaving. Once again, it was time to say goodbye to someone who had become like a part of the family. It's hard when these respite care girls leave, although it is completely understandable. More often than not, they are college-aged and in serious relationships which lead to engagement then marriage.

There have been three wonderful girls we have gotten the privilege of knowing through respite care services. And I am continually impressed with their maturity, professionalism and most of all, their great care-taking skills with Faith.

While it is hard for us to see them go, it is great that there is e-mail, Facebook and even Skype so we can keep in touch. With all of today's technology it makes the goodbye seem not so final. So to Kimberly, Lindsey and Brittnee - three amazing young ladies who we are blessed to know through respite care - we wish you the best in all you do, wherever your journeys take you.

Faith and Brittnee