Pro Choice?

The tone of this post is sarcastic, cynical and hopeful. We went to CHOP (Children's Hospital of Philadelphia) this past Monday. We went to see a geneticist that is an "expert" in the syndrome that we thought Chad may have [ Kabuki Syndrome ]. He doesn't think Chad has Kabuki and has ordered several tests to look for other syndromes that fit Chads, lets say, "profile". One syndrome is Pallister Killian. After getting home Kim and I began to do some research on this syndrome and my first thought was lets stop looking and wait for the results. This is because Kabuki Syndrome appears to be something I would rather Chad have. Upon further consideration and contemplation, it really is clear that no matter what Chad may have, it does not change who he is and my thoughts went to the children affected by Pallister Killian Syndrome. I spent a long night learning all about pallister Killian. The syndrome is a "mosaic" and affects various kinds and numbers of cells and tissues and the extent of involvement(nice word)/severity(not as nice) varies from child to child. Some children do not sit until they are three years old and others are riding bikes. Some sites I looked at talked about what an incredible blessing some of the more "involved" children have been to their families and to many others. Other cites were more directed to the ideology of [this is where sarcasm and cynicism begins]"thankfully there is a genetic test so we can avoid all the unpleasantries of a child with a less than fulfilling quality of life and of course this is to save that child from having to endure such a life". One site was something like "fetus.net" where there was all kinds of information presented from the study of fetuses that had been freed from having to endure a less than perfect life. [This is where it gets more sarcastic and cynical]. I am sure that one thing that might cause uncertainty in making the decision of freeing a less that perfect child from enduring such a life is the uncertainty that the unborn child considered for termination may indeed be only slightly less than normal and may be able to have a mostly normal/non inconvenient[yes, read inconvenient for the parents]. To help those people struggling to make this decision [and please note this is not directed to those that have made such decisions in the past since judgment is not the intent hear, but is perhaps to provide context for others to not make the same decision] I have come up with an idea for a potential Bill to present to Congress. We can call it the "Certificate of Intent". What this would be is a granting of a "Certificate of Intent" to abort or terminate a potentially less than perfect baby or unborn child or "collection of cells that I am not willing to accept will become something I would acknowledge as human when it finally looks enough like such". What this certificate does is grant the owner of the "birthing" or "fetus" the right to consummate that termination, up to the age of 18, if it is decided by the certificate holder that the reasons for the "intent" were in fact valid. There should be no moral problems with this since the certificate is granted before the socially acceptable point of being human. If what is born is close to normal then this Bill will have saved innocent normal humans and those collections of cells that fulfill the reasons for [the intent of] termination are just what was wanted to be avoided and are apparently less than human anyway. What the certificate does is provide a chance for those that are "normal" that might otherwise be unjustly/unintentionally terminated. One problem might be defining the status of the "certificatees" since they are not considered human until age 18 and expiration of the "certificate". Should they be considered property? Should termination be allowed for reasons other than stated in the "certificate" or should the certificate be granted for any reason [legal that is] accepted for abortions in general? This Bill may require a little more thought. Did you know that it has been reported [Washington Post, I can provide a citation if anyone is interested] that the incidence of Downs Syndrome in the American population has decreased significantly since genetic tests became available? Americans tend to think of Hitler and his eugenics ideology as barbaric. The eugenics movement was not a new idea when Hitler embraced it [can you say Appalachians/hill people or retard?]. We in the USA continue in the movement[read "eugenics movement"] under a different name [nameless or is it a choice]? I do believe that we have a "right" to a choice, but we also need to understand that each choice comes with a consequence. I just hope [this is the hopeful part] that those that do not want to or can not care for those that are less than perfect would chose to accept at least the birthing consequence and let those that are willing, accept the blessing of welcoming the less than perfect into their lives.

10 Random Things

1 I just made my Girls unload and reload the dishwasher since it was loaded in such haphazard way that not much would be cleaned. I explained that this was a lesson in doing things right the first time (can a father sound like his mother?).

2 Today was a great day! Totally ordinary with no surprises. Went to breakfast at IHOP with some really great guys. Went swimming. Got a lot done at work[at home]. Spent some time with the kids. Went running. Now I blog. After the blogging Kim and I get to spend some time together watching the much anticipated season premier of LOST. Learning to appreciate each and every day. The small joys really add up when you learn to recognize them for the gifts they are.

3 While living in Vermont, while recovering from the debacle that was the beginning of a long college career [7 years and three schools for undergraduate degree], my friend Jim drove us off an icy mountain road through the air [the silence of a flying car is an interesting sound] and into the river. We did not actually land in the water but landed on top of another car that ran off the road hours earlier. It was strange stepping out of a car onto the top of another[that used to be a really nice 442].

4 My friend Jesse and I once[1990ish] walked through the subway sytem under the streets of North Philly. I mean the subway system, not the stations. What were we thinking? see next random thought.

5 My friend Jesse and I once[1990ish] road bikes across the Ben Franklin Bridge from Philly to Camden to see if we could find a money machine in Camden NJ [we did not find any]. The unemployment rate in Camden was around 30% at the time.

6 My friends Peter, Wade and myself once[2005ish] road bicycles down Skyline Drive in the dark without lights. It was actually one of the most exhilerating experiences of my life. It is a good thing I have someone watching out for me.

7 Laura, who will do an Iron Man first?

8 In 1994 [maybe 1993] there was an ice storm where everything was encased in ice. Kim and I decided it would be a good time to trek across Manayunk [in Philly] to visit her aunt. We literally had to slip and slide by pushing off of objects to propell ourselves. It was really fun.

8 My random thoughts seem to have taken a linear aspect so. . . the other day I was thinking about Pi. Pi not pie. I do not feel the need to defend that. Anyway it occured to me that even as "advanced" as we are we still can not determine the exact area of a circle or volume of a sphere. We are getting closer and closer as we have our computers solving Pi 24/7. I guess we cant solve all our problems on our own?

9 If all the people on earth disappeared today, the pryamids and the writing within and cave paintings will out last the digital information we have today.

10 Mom, Dad, Diana, the plastic red truck that was a companion to the blue car that was supposed to provide part of Dianas entertainment as we drove across the country, flew out the triangle window in Iowa, I think. Sorry you spent so much time looking for it.

If you have two number eights is it really ten thoughts?

Pharmaceuticals

I watched a show on PBS last night about medicating children. Kim had to tell me to stop yelling at the TV. I am kind of passionate about the overuse of medications in our society. "Medicate to conform to the norm" should be the motto. . .for someone.

My work world is quite heavily involved with pharmaceuticals and the intellectual property fields. I have met Nobel Prize laureates that are more concerned with finding answers to our biology to help those with disease and could really care less about making a bazillion dollars on their discoveries and I have also met petty scientists that scream that they have found the cure to every cancer and deserve to have the Nobel Prize and a company that make a bazillion dollars. I also work with lawyers. I prefer to work with the scientists.

Anyway, I am amazed at the trust we put in our doctors. We make an appointment because we have a concern about our health. We spend 10 minutes with the doctor and he suggests that a certain pharmaceutical should correct our symptoms. "OK, you are the expert I'll take it". Would you give a contract to someone that wants to build your house after a ten minute discussion? No, you would take at least a day to think about it, speak to other builders, maybe do a little research? Why would you not do this for your health? Treat your symptoms? How about treating the cause? How about asking another doctor? Would something NON pharmaceutical help? Maybe exercise or a change in diet? We defer to doctors way too easily. Being a doctor is a job! Some doctors are good. Some, not so much. Why would I trust this doctor, I have no clue about, to make a decision for me or my family member. Hello, that is MY responsibility. Doctors are there to help us make those decisions. I learned alot about being an advocate for health care from my wife. She was so not shy about questioning doctors when they suggested treatments or antibiotics for my daughters. It turns out that many doctors prescribe pharmaceuticals because their "customers" expect them to.

I am certainly not taking a position that Doctors are not our friends. Over the last year I have had the opportunity to meet many many doctors at UVA Medical Center and am impressed with their commitment to quality.

It amazes me that many people are on many drugs to treat the symptoms of some disease or condition and on other drugs to combat the side effects of the drugs that treat the symptoms and none of them actually treat the disease state itself.

We live in a society were we are led to believe that a pill should be all we need when in fact more discretion in our life styles might prevent many of the conditions that call for these pills.

Now, I should be clear that I am not anti pharmaceutical. Not by a long shot. I praise God for the benefits of a pharmaceutical that stopped infantile spasms in a young boy this year. Without a successful treatment for this disease, [more]brain damage, lack of mental and physical development or death were possible until the disease ran its course. The untreated course can be 5 or more years. The first line treatment of the few treatments for infantile spasms (a horrible convulsive seizure disease that is accompanied by a brainwave anomaly that results in a child, that to someone not seeing/knowing the child within, that seems to be a shell) is ATHGAR GEL, a steroid (adrenocorticotropic horomone). The good news is that the treatment with ATHGAR GEL worked. It entailed daily injections over a 4 month period. When the treatment started it was quite expensive. $1800 a vial. A vial lasted 5 days at the peak of the treatment. By the time the peak of treatment was at hand, however, the drug was approved as an orphan drug. The price increased. "We increased the price to make the drug more available" the customer service representative from the manufacturer told me. Oh, by the way, the price increased to over $26,000 a vial. No I did not make a typo. The daily injection cost $5,000. Over the course of treatment, over $250,000 worth of medication was used. There was a time when my refrigerator was worth over $100,000 stocked. I thank them for making the drug. The Japanese make a synthetic version that costs a fraction of a fraction of the FDA approved "natural version". It appears to me, upon a review of the literature, to work just as well. The FDA has not approved that version for use in the USA. There is another drug available in Canada that also costs a fraction of a fraction, but it too is not FDA approved for use in The USA.
I could go on, and probably will in the future.

Take home message: Ask questions, take responsibility, and be thankful.

BENT

Bent on what? Bent out of shape? Sometimes we get bent out of shape over small trivial things. I think that I tend to rationalize that I get bent on "small" things as an outlet for keeping calm cool and collected over the "big" things. When someone is choking, I remain calm and execute proper procedures. When the dishwasher has not been emptied, I may react in a less than calm cool and collected manner. What gives? I think we usually get bent when we sense a lack of control. It might be easier to accept that we do not have control over someone choking than someone not emptying the dishwasher. It may, however, be just as important to recognize that we really have no real control over either someone choking or someone not emptying the dishwasher. But we do have control over how we react to each of these. One situation may seem more important than the other. One may be important in saving ones life. The other may have importance in shaping ones life. I pray that I have understanding of the importance of the "small" reactions and actions I have and make each day.

Christmas Tractors and Five Pound Babies

Decided to go for a run tonight after returning home from Chad's visitation. I donned my running gear and my flashing red lights. I love running in the cold dark (no sarcasm, I really do!) I so enjoyed checking out the Christmas lights. From a simple candle in one window to the 100,000 light show complete with the Juggling Santa and Christmas Ferris wheel. I like to display some lights; red and green "icicles" dangling from the roof's edge, white lights edging the garage "barn doors", green lights down the downspouts, green and red candles in the windows. The lighting scheme changes from year to year, but for the last four years the tree out front has looked the same. That is because I have never taken those lights down. Each year we have gone out, plugged them in and the tree of 2003 lights up. Each year we have seen how much the tree has grown. The tree is a spruce and is quite a bit larger than it was four years ago. It is a fun family tradition that is sure to end soon. . . or maybe when those lights fail we can put on some new ones and continue. I know my wife is very pleased that I did not decorate the dead lawn tractor [1986 Wheel Horse] again this year. I decorated the tractor while waiting for Kim to come home from the hospital with Chad. We had both spent the last week at the hospital being trained on how to care for him. The tractor was spectacular.

Chad's father was not at visitation today, but his grandmother was. She is a sweet 62 year old woman who is the main caregiver for Chad's two year-old sister. She seems to have a peace about us continuing to care for Chad. We are invited to her brother's house on Christmas Eve. It will be fun - good food, gospel music, and a celebration of Christ's birth with our new expanded family. We visited Chad's grandmother's Church for a dedication service for Chad's sister. Surprisingly Chad's father invited us up to dedicate Chad. We have come the the realization that if we are so blessed as to be able to adopt Chad we will be welcomed into a new family. This is not your typical Fostering experience. Today she gave each of my girls a crisp twenty for Christmas.

It is amazing how things begin to work when you "give up" the control that you do not have anyway.

Today we came home from visitation with a tiny five pound baby girl. My girls are in a state of delight. They can not get enough of loving on babies. It makes my heart burst with JOY to see the unconditional love these incredible girls have. My wife and I have hardly had a chance to even hold her. The girls picked up this tiny baby with more confidence than me. I was afraid I might break such a tiny little thing. We will only have her for a day or a few, but I know she will leave an everlasting impact on each member of my family. My wife just took another picture. . .

"Special" Needs

Tomorrow could be the last visitation for the father of my son. I am his dad. We have had Chad for over a year now. The last year was one of the longest years of my life (and I think longer for my wife) and I can hardly believe a year has already passed. I pray that he will become a permanent part of my family.

"Special" needs. We hear people talk about "special needs children", or "differently abled" or "handicapped" or "handicapable" or blah, blah, blah, etc, etc. . ."let make up a name that makes ME feel OK about this child". This boy is so cool. He has so many things that make him "special" that we have had to make visits to neurosurgeons, neurologists, developmental pediatricians, nutritionist, nephrologist, cardiologist, opthamologist, neuro opthamologist, gastroenterologist, geneticist, orthopedist, pysical therapists, and speech pathologist. MRIs, EEGs, CAT scans, ECGs. . .My girls have learned alot about medical care this year. We go to most appointments as a family. It has been a part of their homeschool this year(they both know how to hook up a G-tube for bolus feeding and attended training for infant CPR, for example). It is quite amazing to witness two young girls give tender love to a child that is so very normal to them, to have never heard them complain about sharing their time with a child that demands much of their parents time. I have never heard them say anything but positive things about the boy (except of course comments about various smells that Chad is quite talented at producing and, before picking him up, questioning when he last was fed to avoid wearing what he might have just been fed).

My wife, Kim, and I have realized how easy our lives were before having Chad. You miss alot about life and I think may not be listening for God when things are easy. This hectic rollercoaster year has been a blessing for my family.


I am occasionally asked something like "If you knew all that you know now would you do it again?" Interestingly, this question can typically be interpreted to be "If you knew all of the "problems this child has" would you. . .?". My honest answer is: If I knew only about all the Drs appointments, the heartache, the sleepless nights, the tension that results between spouses when they are stretched thin. . etc. Well I don't know, sounds hard, there must be more qualified people. But we brought Chad into our home with the commitment to provide him the best care we can. We were not aware of the tremendous challenge it would be to care for him and we were also not aware of the tremendous blessing he would be to our family and to many others.

What makes Chad so "special" is really NOT all of his "problems", but IS how he has touched the hearts of so any people. He greets you every morning with a beautiful smile.

What Does One Say in Their First Post?

I have often thought about starting a journal or perhaps recording my thought(s) on an MP3 recorder as I run. I think often and act occasionally. I started this blog because my wife thought it would be a good idea for me to extend my genius to the world (She didnt actually say genius, but I know what she meant). "Genius" is a relative term. Einstein was a "genius" in physics, but failed at marriage and made key contributions to technology that can destroy all life on earth. Einstein was a Jew that viewed science as a means to find out "how God thinks" (paraphrased quote). Einstein was also a "deist" who believed that God created our universe and sits now watching what is happening within it with no power to change the course of events spurred by His own creation. "Genius" is a relative term. I think it is safe to say that a genius is one who is granted a gift in one or more facets of our being. For example, smart in math, able to master many languages, artistic, good cook, skilled at sport, skilled at ripping people off, etc. A genius is really really good at one or more things. A "genius" is surely not so smart in other areas. Be careful when listening to a "genius". Geniuses have been known to be wrong even in there strongest area of genius.