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Sunday, August 30, 2009

Loss of a child with Mito

This is straight off the blog from another parent that has two kids, one with Mito Encephelopathy and one with Autism. This literally took the breath out of my body when I read it. The pain I felt for this family was unreal. I am still crying. Please pray for this family. Thanks for posting this Colleen.

Today my heart is breaking for one of the familys that I have been following the past year. They had two little girls and expecting a third. Their little one Marie had a type of mito, called Leighs disease. I have been following their joys and struggles. Yesterday I witnessed both of these. Thursday they welcomed a new baby girl into their family, Sarah. Sarah met her big sisters that night. Sadly Friday morning, Marie made her journey home, carried by Jesus. She passed away in her sleep. My heart is just aching for them. Please send some prayers for their family!
created with love by Colleen at 8/29/2009 07:58:00 AM

Health Care

This is an email that Pat sent in response to something he received. I thought it was something worth sharing. Feel free to do the same if you like.

The health care issues at hand have gotten convoluted. We should not get so bogged down in the finger pointing, but focus on simplicity. Just as this country was founded and has evolved into the greatest in the world everyone has actually gotten too far ahead of themselves. Earning, accountability, repercussions and risk have been left to the way side as merely expected actions. In turn, those that take these actions, abide by the rules, and are productive in our society carry this burden everyday to provide for those that are less fortunate and those that do nothing. It is horrible that there are individuals that know someone will provide for them and they think it is their right of passage to get a hand out. I am all for helping those that have fallen on hard times, disabled, retired, etc., but to keep enabling our society is a crime in itself. This is exactly where this health care reform is headed. It’s just down right scary. In my specific situation with my daughter it is perplexing that my government thinks it’s okay for my wife to loose sleep, be a full-time caregiver & nurse, surrender time with her other children, become sequestered to the house, socially reclusive with our other children’s education and activities, a shower and brushing her teeth before noon is a luxury, pay a private caregiver to make doctor visits, and that a visit to the emergency room with Megan is considered a date for us. This is all because my income doesn’t make my daughter quality for the benefits I work so hard to provide others. Why are those that qualify for benefits any better than my wife and I? It’s not okay for them to loose sleep (so give them a nurse), miss spending time with their other children (so give them a nurse), go shopping (so give them a nurse), need to be hospitalized (so provide them insurance, no payment necessary, no haggling with the insurance company) or quit their job (so provide them funding and they don’t have to work), but it is expected of us? It is absolutely wrong that we are being treated like this when we are working to support these other folks that “qualify”. It’s been an adage within our society for many years that it’s more financially rewarding to stay home and collect a check than to get a job. It’s time for the party to be over. Our founding fathers would turn over in their grave. If I am correct the “us” makes up about 90% of the population. It’s pretty simple. When we colonized and built this country everyone worked in some capacity. If they didn’t work, then they starved. No one starved, because they knew they had to work; either with everyone or on their own. There were no hand outs and it was frowned upon not to be a productive individual. Why is today any different? I have a problem with giving, providing and rewarding those that do not contribute and penalizing those that do contribute everyday, every hour and every minute. My particular situation is plainly a text book example of why our system does not work. My government has failed me. My daughter is broken. It is not her fault, nor mine. If she could choose I guarantee she would like to be able to walk, talk, hear, see and be totally cognitive of her surroundings to enable her to excel in society. Instead, she will never run on a playground, drink from a cup, eat at the dinner table, say a prayer, ride a bike, be a cheerleader, read a book, graduate, drive a car, work, or walk down the aisle with me by her side. This is the question, “If we cannot provide the necessities to the producers of this country and we cannot adequately administer our current government programs (SS and Medicare), then why should we GIVE anyone anything when we cannot afford what we already have?” It sounds like the housing crisis, when everyone took out equity lines and lived beyond their means. I know you understand all of this, but it is unconscionable that our nation continues down this path. We have to correct the current system first. Feel free to pass it on

Thursday, August 27, 2009

Tampa Trib Article

I just added the Tampa Trib/TBO article that ran yesterday. While it is okay, it is inaccurate in some of the items - such as overnight nursing only being needed and the cost @ 300,000. The need is 24 hrs and @ 24 hours/365 days a year it is 300,000 + and for 12 hours per day/365 days a year it is 150,000 +. Some people were brutal in posting comments but I do realize that this is an article, not the whole story and not all that Megan is. Megan has not always been like this and if not for medical side effects, some screw ups she would not be in this position. On the other hand, these devices have also saved her life from dying from the medical mishaps. Yes - she has a genetic metabolic, nuerological disease. Her seizures are bad - there have been too many physcians who are much too passive and ALLOWED her seizures to escalate while experimenting with medications to try and fix them. Most write these kids off and dont try hard enough. Parents with children like Megan understand that there are some things that can help and unless you scratch and fight it does not happen. Our point was to be that there are children less severely affected than Megan, who receive "free nursing" because they qualify financially. Because we are not indogent we dont qualify. Our private insurance does not cover. I cant buy the coverage, or else I would!!! Believe me, I would! Why does the child from the family that is indogent deserve a better quality than my daughter - the daughter of a family who helps to provide for the indogent family. They get to sleep because they have a nurse. Then in the morning they get to get up and do whatever - because a new nurse comes. I do not want someone else to "take care" of my child. I am on it - but I do need to sleep so that I am able to . I also need to be able to wean her from this ventilator which will require supervision so she can have a better quality of life. That is the goal here - it is not to torture her. And she does know she is loved, and she does love us.

Giving all for Megan

Giving all for Megan

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Wednesday, August 26, 2009

Overdue update

Another month has gone by and a lot has happened. Meg has been sick for the entire month of August with a throat infection that will not go away. The omnicef started to work and then the puss returned within three days of the last dose. She then had Rocephin shots three days in a row which cleared up the tonsils again - for one week exactly and then it was raging again. We then started cleomycin which once again cleared up the tonsils until the 9th day of treatment(10 total) which was this past Monday. We stopped that one and the Dr. switched her to Ciproflaxin and Diflucan thinking that it is fungal or yeast and/or a very resistant bacteria combo and we should try to get it with these two. Maybe psuedomonas? Commin in kids with trachs. It responds to the antibiotics and then resists it. I hope that we dont have to go inpatient to treat this one. Being sick is a big setback for her. All that rolling has come to a halt. We also started her on a new seizure med - rufinamide which was approved in the U.S. in November of 08 and it just being prescribed to patients this past spring. I have seen less seizures since she has gotten to full strength. I could not count the number in a day anymore and today I have seen about 8. She will have more when her body is fighting and illness too, so maybe it is working better than I see right now. The ketogenic diet is also planned for September still. Pat and I have met with Senator Victor Crist last week to talk about the gaps in health care for Megan and the devastating effects it has on everyone and how Megan deserves the same medical attention that someone who does not have insurance or cant afford insurance gets. Why does she not qualify - it should be a quality of life issue.

Rachelle also left for grad school - we miss her a lot. She became a normal fixture and part of every day around here. Meg sure does love her too. We will be happy to see her when she visits us - RIGHT RACHELLE? WHEN YOU VISIT US???????

Kaela(Rachelle's old roommate) started helping out this past Monday and she is training on all Meg's stuff. So far so good.

Going to go eat dinner right now - blog later.

Article in Tampa Tribune today - will post it in a little while