Kidney Health

Sometimes you can do everything right, and things still don't go the way you want.

Ronnie visited his nephrologist last week, and the blood work numbers weren't good. His creatine level, what I understand to be a measure of kidney function, has been slowly creeping up. As of last week, the numbers were double what they should be. The doctor said that despite the bladder augmentation surgery Ronnie endured two years ago, his kidneys, especially his right kidney, are not doing well.

Ronnie follows a very strict diet. He takes hands full of medicine three times a day. He cathes on a schedule set by his doctors. Yet still, his kidneys are not responding.

If Ronnie's birth parent had heeded the call of the medical professionals rather than the call of her pusher, or if Ronnie's foster parents had followed through with his medical care, he would not be facing these kidney issues now. But none of that happened.

It is what it is. We will do whatever is required to maintain Ronnie's kidney health as long as we can, and then we will get him on the kidney donor list. I haven't heard good things about that list, and that folks can wait many, many years on it, but we will deal with that also when we need to.

Ronnie has a bright future ahead and really doesn't need this...

Sad

Today I am sad about something. It may seem like a small thing, but still today it bothered me.

Ashley will never be able to see a real rainbow.




Rainbows have always thrilled me. It's like a special surprise at the end of a rain storm. When I see one, I feel lucky somehow, like someone has given me an unexpected gift.

I know she can see small pictures of a rainbow but never the real thing - never the surprise, the joy, the unexpected smile that appears along with the lovely display of colors.

It makes me sad....

Ready Yet?

(picture courtesy of AFP/Getty Images)

When the tragedy of September 11th occurred, I immediately started thinking about disaster planning for my family. When Hurricane Katrina struck, I again started thinking about disaster planning. Today, after the events in Japan, I am still thinking and still not doing.

I’ve asked myself what would I do if the disaster struck while my children and I were separated – me at work, them at school for instance. How would the schools handle things, and how would I get reunited with my children?

I remember on September 11th that I felt compelled to leave work, and rush to the sides of my children. I knew I would just feel better if they were all with me, not spread around three different school buildings. A similar condition still exists today – my five children are in three different schools. How, and in what order would I go to get them, if I even could get to them? How would they all handle the waiting for me, or worse, how would they handle being injured? Could I depend on the school staff to comfort my children and make sure they were as safe as possible? Unfortunately, I think the answer to that question, at least for my three children with disabilities, is NO.

In two of the three schools attended by my children, the teachers of children labeled with severe disabilities are advised not to take their kids outside for fire drills. So, how will the teachers and the students know when the loud buzzer is signaling a drill or an actual event? The cynical me thinks the disaster plan for children with disabilities is to sacrifice them in favor of getting the non-disabled to a safe place.

But what if I was at home with my children when a disaster struck. I asked myself do I have a disaster plan in place, and especially one that addresses the significant needs of my children with disabilities? The answer is no, unless you count the jumbled list of thoughts in my head a disaster plan. So, while I am questioning and suggesting and demanding that my school system develop a comprehensive disaster plan, I need to do the same thing myself at home.

It’s been almost ten years since the September 11th attacks, and still I have done nothing to prepare myself and my family for a disaster. Perhaps the events in Japan will be the impetus I need. I certainly hope so.

After googling a bit, I found some good resources to help me down that path. They are listed below and I suggest everyone, especially families who have family members with special needs, take the time to review them. (Due to high traffic related to the Japan disaster, the Red Cross site may be down intermittently.)

• Red Cross Disaster Preparedness for People with Disabilities


• FEMA - Preparing for a Disaster / People with Special Needs


• Ready America for People with Special Needs


• DisabilityInfo.Gov - Emergency Preparedness

Too Good To Be True

Just last week I wrote about Microsoft's new gaming system that would recognize sign language. Having two deaf children, I was extremely excited about that, and quite impressed that a company like Microsoft was keeping the needs of its customers with disabilities in mind. It sounded almost too good to be true - and apparently it was.

The mention of American Sign Language (ASL) support in Microsoft’s Kinect patent raised hopes that the motion-gaming add on might be useful for more than just interacting with virtual children or swordfighting without swords; unfortunately, Microsoft has confirmed Kinect won’t actually ship with ASL functionality. The reason? Microsoft downgraded Kinect’s video hardware capabilities.

While Kinect will ship with webcams capable of 320 x 240, Microsoft apparently planned the cameras to support over twice that resolution. That would have allowed the system to recognize not just limbs but individual fingers, hence the ASL support.

Unfortunately, in trying to cut costs, hit a $150 street price and still maintain a decent profit margin, Microsoft supposedly opted to use cheaper, less capable cameras, which can only recognize limbs. They also offloaded some of Kinect’s processing from the camera-bar itself to the Xbox 360 console itself. Microsoft hasn’t confirmed this is all true, but if so it suggests the first-gen hardware will never be able to support ASL.

You haev disappointed me, Microsoft, really disappointed me....

Is There a Right Answer?

I'm curious to know how others feel about this.

Abbie Dorn always wanted children, and in June 2006 she got her wish -- triplets. But during a difficult birth she suffered severe brain damage that took away her chance to raise them.

Now, her parents and former husband are locked in a legal battle over whether Dorn is capable of interacting with her children, and whether they should visit her.

The full text of the article can be found here.

Should Abbie be able to visit with her children? Would it be too traumatic for them? If not now, when should they be allowed to visit? Do you feel her husband is being cruel, or are her parents being unrealistic?

Whatever else you may feel, I think we can all agree that what happened to Abbie during her delivery is very sad...

Hear Today, Gone Tomorrow

What little bit of hearing my dear Ashley had is starting to deteriorate. Two years ago, the audiologist recorded a profound loss in her right ear and a severe loss in her left. But, she could still hear loud noises, and seemed to hear the voices of some people, people I think whose tone and cadence she had become accustomed to.

She’s always relied a lot on Tadoma, and if a person will get close enough to her, she can also read lips a little. But recently, I’m noticing that she is missing things she used to be able to hear. And the worst thing of all, the few words that she could almost say are now nearly unrecognizable.

I can’t remember the last time I heard ‘Gip’, her way of saying her brother’s name, Chip. ‘Hi’ - or her version ‘HUH’ - is seldom uttered anymore, although we do still hear ‘Bye’ pretty clearly. She also will still say ‘Oooh Mae’, her way of saying her dear aide’s name Amy.

But the saddest loss? I’m not hearing ‘Mom Mom’ very often, and her ‘I lu’ for ‘I love you’ is slowly slipping away.

Yes, she signs all those things. Yes, her signing has improved even as her hearing as deteriorated. But, I’m really going to miss the sweet little voice of my daughter.

Maybe I shouldn’t be so sad….but I am.

First One Then Another

Regardless of your politics, it’s hard to ignore the impact Senator Ted Kennedy has had on this country. The news of his passing so close on the passing of his sister, Eunice, has saddened me greatly. I firmly believe that the lives of people with disabilities have been positively influenced by both Kennedys.



Several years back, when the reauthorization of IDEA was being formulated, I drove to Washington, DC to meet with Senator Kennedy. I wanted to give him a first hand account of what it was like to raise a child with significant disabilities. I wanted him to hear about the joys and the struggles, the fight for an education, and all the medical battles. Honestly, I expected my meeting to be relegated to an aide, someone who would politely listen and promise to share my thoughts with the Senator. But Senator Kennedy himself met with me for about an hour.

I was, of course, quite intimidated, but he immediately put me at ease. It was impossible to ignore the fire in his eyes when he discussed people with disabilities. This was not a man just saying what he thought I wanted to hear. He believed with his entire being that both the life and the education of children with disabilities could be improved. And he went on to fight for that improvement.

So today my heartfelt condolences go out to his family, and I firmly believe this nation, and especially people with disabilities, has lost a warrior. Rest in peace, Senator.

Below is the eulogy Ted Kennedy delivered at his brother, Bobby's funeral. The words are as heartfelt and significant today as they were then.

Day Off

Today brings the final farewell for Mr. B. It's a tough day for me, and I have decided to take the day off from blogworld. Hope you understand. See you all tomorrow for Special Exposure Wednesday.