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FatherPOV version 2.0

Most of you have already discovered that I have “re-branded” if you will. I needed a fresh start and everything just sort of fell into place for the New Year.  I have not yet decided if I will migrate the content here or link to it. There is a Feed for my new home in the sidebar to your right.

Thank you all for reading and following me here and I hope that you will journey over and subscribe to my “upgrade.” I will see you over at my new home!

Body by Google

I discovered this article during some reading this morning and found it fascinating. Much like Google Earth, the Body Browser, also by Google, is a 3-D rendering of the human body. There are certain browser limitations it seems for now and the article explains this. It will be interesting to see how this evolves.

Visit bodybrowser.googlelabs.com to check this out.

Thanks for reading my point of view, http://www.twitter.com/fatherpov

Referred Article Link: http://on.mash.to/gCeEHi

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I have been honored with an award nomination from Grateful Mama. It is the Versatile Blogger Award! The rules of accepting this award are to share 7 things about myself and to nominate 7 deserving bloggers. So let me see what I can think of to share.

 

versatile-bloggeraward

  1. I am a music composer and have an aspiration of writing a Broadway style musical which profits would be contributed for research of Fanconi Anemia (my son’s rare disease), Cancer & other rare diseases.  My initial concept has the show titled “Cure” the musical experience.
  2. I have sang on stage at the Metropolitan Opera House. There was thankfully no audience as it was during a backstage tour. As we walked across the stage I stopped in the center and belted a few bars. The guide said no one had ever done that before. Always glad to be the first! Everyone laughed.
  3. My 2 year old son inspires me everyday with his fight and will to survive.
  4. I Love Walt Disney World, I proposed to my wife in front of Cinderella’s Castle, we honeymooned there, & our son’s name is inspired by Walt.
  5. I am a runner, my goal is to run the Walt Disney World Marathon in honor of my son.
  6. My outlook on life and values have dramatically changed in the past two years.
  7. While my life is now full of struggles and challenges (mentally, medically, financially) I still feel that my life is rich and full of purpose.

I am not certain that I really am worthy of this award, but I am honored to be given this. I do have the following 7 blogs to nominate that I feel are very worthy. These blog writers are very inspirational and passionate about the subjects the write about. They always give me great ideas and sometimes the extra push I need to take a step. I hope everyone will take some time to read these. You will likely find a new favorite blog. To the winners I selected, thank you for what you do and how you help me.

  • TherExtras is a therapist with great experience and suggestions for parents of children with special and medically complex needs.
  • HauteSingleMama has an amazing & inspirational story
  • ParkerMama is a very strong advocate for her child
  • Sneakpeekatme always has something witty and positive
  • Kadiera another trach mom I can relate with very well
  • DanaSearsFam is a hoot! sassy & witty which I suspect how she stays sane with a medically fragile child, and a ridiculous medical system
  • wavetree another now former (hurray!) trach dad who obviously cares a great deal for his daughter.

While there are others that i read that are deserving as well, these stand out to me. I hope each of them will accept this award as well I hope you find a new favorite. Happy Blogging!

 

Thanks for reading my point of view, http://www.twitter.com/fatherpov

And Slow It Goes

I appreciate all my follower’s thoughts and prayers. I have been very busy with my son, and not very active on Twitter the past several days. He continues to improve….slowly. He has started to sit up on his own, which is a positive. He has also stood up a few times only to quickly realize that wasn’t such a great idea. He attempted to walk for the first time yesterday and he did not do so well. The term “drunken sailor” comes to mind. He at least laughed instead of crying which he has done some out of frustration. He will get there again, he just needs time. The FA doctors want another set of blood counts at the end of this week. We are praying for a continued upward trend. We have high hopes just based on his energy increase over the past few days.

Today for some reason it was really noticeable the weight he lost during all this. The lack of “pudge” on his thighs and arms was very obvious and stood out today for some reason. He is taking it well, being weak that is, but you can sense he is missing doing the things he remembers doing before this. We are hoping that it is merely weakness and fatigue rather than developmental set backs. Still, we know he will re-learn and conquer those challenges, mainly the walking. He had become so well adjusted to walking, even in his little shoes. We can not wait for that again. Despite the slow go, we a grateful for him and his amazing attitude. It has been a very rough and emotional few weeks. The likes we have not experienced in awhile. We did not miss it, and while we know there are more of these moments ahead of us, we will simply cherish the thriving ones more fervently.

Thanks for reading my point of view, http://www.twitter.com/fatherpov

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Emergency Surgery

One of the many anomalies my son was born with caused by his Fanconi Anemia was an imperforate anus. On November the 8th my son had surgery to reverse his colostomy. We were scheduled to be in the hospital four days. Well it is eleven days later and we have had many complications with this surgery.

The first stage was a PSARP or “Pull-thru” as it is called. This was done in June to create an opening and pull the rectum through (thus the surgery name). Dilations were the most difficult thing to do to our child to make the rectum muscles open and stregthen to create better continence chances. Once the healing process was complete a colostomy reversal could be done. My son has had this since he was less that 36 hours old. We were excited to do this as it was to create a better quality of life for him in the long run. That brings us to tonight.

His stomach has been very distended and he has had a mass around the surgical site. This was dismissed as an normal abnormality that resolves itself over time. They called it a saroma which is fluid build up around the tissue. It is typically reabsorbed by the body. In my son’s case it worsened. Then today high fevers began causing grave concern on my part. Cultures were done and we are awaiting preliminary results. The Bone Marrow Team is following this develop and reccommending the appropriate treatments. It is feared to be a central line infection. This evening the colorectal team assessed my son’s stomach and were concerned by the appearence of the mass they have so quickly dismissed through the past two weeks, despite our questions and voice of concern. It was so disturbing a CT scan was ordered immeadiately. They moved him straight from CT to the operating room at 11 pm on a Friday Night. Emergency surgery! The findings based on the CT scan is that the bowel is herniated and has pushed up so much that it was protruding outward and causing gas and fluid not to flow appropriately. The surgeons, the best in the world at this surgery in fact the creators and pioneers were uncertain, how long the surgery would take, what they would find and the final action until they opened him up. More than likely they would need to return the colostomy. The very thing we came here 11 days ago to get rid of and move forward. There are feelings of guilt that I know are unfounded. The waiting after such a long whirlwind day is intense. Especially anticipating the unknown outcome and not having any idea how long I must sit here and wait. I am blessed to have such great support from many people whom I have never met! Your support, thoughts, & prayers give me the strength to press on and feel strong! For that I thank you all.

Thanks for reading my point of view,

http://www.twitter.com/fatherpov

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As it became more apparent today that our surgical admission is turning into a much more open-ended one, I found myself with a new concern other than just my son’s recovery from his latest surgery. Will he contract another infection or other issue? This is always on my mind during any contact with medical staff, and let’s face it, the hospital is the worst place in the world for a sick person. Especially when that individual is immune compromised. Ironic isn’t is? That irony ranks right up there with getting rest in a hospital. As I once said about the hospital culture; Want rest or to be left alone and they come one by one, but need something and not a soul can be found. Back to the topic now. Hospital infections and more importantly how we as parents and caregivers can help minimize the exposure, at least to your precious one. This article is not meant to bash the healthcare staff of hospitals, but rather raise awareness to parents to help advocate and potentially reduce the spread of these infections[….]

Read full article here

Reminded: Need for a Cure

Well it has been several weeks since I have had the opportunity to post anything. Things have been, how shall I say this, hectic sounds appropriate. This week alone the basement in our house has flooded twice, once being at 2 am, the washing machine has become possessed and the dishwasher flooding my kitchen – unrelated to the basement floodings – and of course our day-shift nurse missing 4 of the last 7 scheduled shifts has left little time for blogging or anything else.

I am not certain that I have anything of substance to write about today except to tell you that I am alive. I should update everyone on the 12 year old boy I had written about in my last post passed away two weekends ago. This disease, is horrible. Then news came that a second patient passed away the following day. Too many precious lives taken and sadly it will continue to do so until a cure can be found. As fate would have it, five days later the Fanconi Anemia Scientific Symposium began for researchers from around the world. What a timely, yet tragic reminder for this gathering of scientist and doctors to discuss treatment, research, and the path to a cure. Anyone that is connected to this disease in any way will tell you how precious the angels of FA are towards finding a cure.

Thanks for reading my point of view, http://www.twitter.com/fatherpov

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